This blog addresses various emotional aspects of experiencing infertility. It is written by a clinical psychologist who specializes in infertility counseling. Thank you for reading, and best of luck with your journey!

Monday, November 21, 2011

Infertility and the myth of the reparative experience

A common theme in psychotherapy is the wish for a reparative experience, or an experience that in some way,  makes up for a prior bad experience.  Unfortunately, as much as reparative experiences seem like a good idea, the quest for them is actually the cause of much human misery--for in many situations, repair is impossible.   For example, if a woman grew up with a parent who was distant and uninvolved, she may find herself romantically attracted to men who are similarly distant and uninvolved.  She is motivated by the unconscious idea that if she could just get this man to love her and pay attention to her, it would somehow make up for the fact that her father did not.  Of course, we all know how this story goes.  Too often, the new romantic interest is psychologically incapable of being emotionally close, and thus the cycle continues.  Further, once the woman realizes that she has been, yet again, rejected. she is retraumatized.  She then becomes even more invested in the struggle to get a distant and uninvolved man to change.

The same dynamics that can make the struggle for a reparative experience so compelling in terms of relationships also hold true for infertility.  In trying to overcome our infertility, we are sometimes not just building a family; we are also attempting to somehow repair the emotional damage done by infertility.  I often hear patients tell me that if only they could get pregnant, everything in their life would be fine. And yet, although things are usually indeed better, pregnancy and parenting bring about their own set of stresses and problems.

My own recent experiences have been a case in point.  As I have mentioned in prior posts, I was recently pregnant and had a baby boy in October--the result of a final cycle with our one remaining frozen embryo.  Throughout the pregnancy,  I found myself worried that I would have to have another C-section.  I wanted to have a vaginal delivery for a variety of medical reasons, but also because I wanted to feel like I was "normal" in the reproductive sense, at least for once in my life.  When it became clear that a C-section was again inevitable, I briefly became depressed.  I realized that I too was longing for a reparative experience. Instead, I was forced to accept that my reproductive system was yet again not functioning normally.  Since this was definitely my last cycle and my last baby, my chances for a reparative experience were at an end.

However, regardless of the nature of my delivery, nothing can really fix the emotional scars from my experiences with infertility.  Despite the fact that I wish it were otherwise, I must accept that for me, having a baby is like driving a very old car  from New York to California.  The car can only goes 20 miles per hour, and if you don't want it to explode, you have to pull over and add oil to the engine every five miles.  Sure, you will eventually get to California...but it will take you a lot longer to get there, cost more money, and you are going to be pretty darn tired once you arrive.  And trust me, although that experience is not easy, I know I am lucky to have a car at all.

In the end, we must learn to accept our losses.  If we don't, we will find our energy depleted by our efforts to fix what can't be repaired.  Even when we are able to overcome our infertility and have a family, we are still likely to have negative feelings about our infertility experience.  The good news is that if we can devote our energies to other, more fruitful, endeavors, instead of trying in vain to undo our painful experiences, we can have a much richer, rewarding life.  This weekend, I ran into an acquaintance who recently completed her first marathon, which to me seems a very impressive task.  At first I thought to myself that I'd never be able to run a marathon, but then I realized that in terms of my infertility, I've been running my own type of marathon for the last decade or so.  I think that running an actual marathon, although difficult, may be easier than infertility treatment.  Now that I've dealt more deeply with my feelings of loss and sadness regarding my infertility, perhaps I'll have more energy to run my current "marathon"--parenting an infant, preschooler, and tween on very little sleep!  And when things settle down, maybe I'll be inspired to run my own kind of marathon, although I doubt it will be the actual kind. 

For all of us struggling with infertility, it is important to take a moment to consider if we are on a quest for a reparative experience, even in a subtle fashion.   By dealing more directly with our feelings of loss, we may be able to free up energy we can use to create our families, or enrich our lives and relationships in other ways.


Tuesday, October 11, 2011

My top ten tips for dealing with infertility

I've been in the infertility world, both personally and professionally, for a long time now. Over this time, I have witnessed some strategies for dealing with infertility which seemed to consistently move things in a positive direction. I thought it might be useful to summarize these strategies for those who may be just embarking on their infertility journey, or who are ensconced in the middle of their struggle. Of course, like most retrospectively formed lists of advice, this is more of a "do what I say, not what I do" type of exercise! My hope is that by sharing these strategies, I can help someone avoid some of the pitfalls I experienced. After all, we all don't always have to learn everything the hard way!

1. Take the outlook that infertility isn't personal. It is a medical condition, plain and simple.

It eludes me how a much controversy exists about whether or not infertility should be considered a medical problem. I guess I can understand why an insurance company executive would wish to avoid this truth. However, I am continually flabbergasted by how many people seem to believe that there is some moral judgement involved. If you are of reproductive age and you can't conceive a child, then it is obvious that something physical is wrong!

2. Realize that yes, this happened to you, and that it is totally unfair. However, if you spend too much time thinking about this, it might drive you a little crazy.

Infertility almost always comes as a bit of a shock, and it is natural to feel cheated when others can conceive easily. It is one of life's mysteries as to why this happens. My best advice is just to try and accept this as a mystery--trying to figure out why unfair things happen usually isn't successful, and it just makes us feel bad.

3. Don't always try to be positive.

Many people feel that if they don't always maintain a positive attitude, they will somehow be inviting bad energy, luck, or events into their lives. However, this simply isn't a realistic expectation. Some situations, by their nature, are just hard, sad, and painful. I feel it is more important to allow yourself the freedom to feel whatever emotions you are having. If you work to express them in a productive way, your feelings will lessen in intensity, and you will be able to move forward.

4. Educate yourself as much as possible about your diagnosis, prognosis, and treatment options.

Although it can be complicated and time-consuming, it is very helpful to know as much as you can about the medical conditions with which you are struggling. This is very helpful in terms of making treatment decisions. In addition, this knowledge can also help you gain a better emotional understanding of your situation, and can also provide emotional closure should you need to move on to other family building options.

5. Don't expect anyone else to care about your infertility problems as much as you and your partner do.

Your medical treatment team, although they may be dedicated to your case, has a lot of other patients and issues with which to cope. You cannot rely on them to be on top of every detail of your treatment--you have to do this for yourself. Also, remember that even though your friends and family care about what is happening to you, they have their own lives and issues. Sometimes, you may need to remind them about what is happening or what help you may need from them.

 6. Learn from your painful experiences and mistakes.

Infertility is complicated, and there will be times when you may make the wrong decision, or end up having regrets. This is inevitable. The important thing is to not be afraid to use these experiences to change your problem solving strategies--whether that means changing doctors, clinics, treatment modalities, or going down a different path of family building altogether.

7. Be as proactive as possible.

Infertility is a major life crisis, and the task of having children is one of the most important things you will ever do. Thus, you must do whatever you believe will give you the best chance of success--even if it's hard, inconvenient, or expensive.

8. Recognize that some people are going to say stupid or hurtful things--no matter what.

I wish this statement wasn't true, but the fact remains that many people harbor misconceptions about infertility, or are insensitive to other people's feelings. It is a small comfort, but the fact is that people will say stupid and hurtful things about any number of subjects, not just infertility alone
9. Try to identify who you can get support from, and focus on those relationships.

Sometimes it is surprising to discover who among your friends and family you can count on, and who you can't. Don't feel guilty about not sharing information or being as close as you were to people who, for whatever reasons, cannot be helpful during this phase of your life. You are in a crisis, and you need to focus your energy on those relationships which can provide you with support and understanding.

10. Remember to take the long view.

An important factor to consider when making decisions about infertility treatment is that you are trying to keep yourself from having major regrets later in life. Try to think about how you might feel about your decision ten, twenty, and thirty years into the future, after the window for making these decisions has long past. This perspective may prompt you to do things that are harder in the short-term in order to prevent long-term regrets. Although this is difficult, you can be confident that your future self will appreciate your hard work and sacrifice!

Sunday, September 11, 2011

On loss and miscarriage after infertility

Today, of course, is the tenth anniversary of the terrible events which occurred on September 11, 2001. For all of us, it is impossible to avoid thinking about where we were when we heard about the attacks. But for me, I also can't help remember what I was that day--which was pregnant, for the first time.

I was driving through Chicago gridlock to get my second hcg level drawn when I heard the news that planes were crashing into the World Trade Center. It was following my first IVF, which was a disaster all around, and worthy of a blog post in its own right. I was shocked and horrified all day long as the events unfolded. In addition, I was quite anxious and worried, waiting to hear "the number" from the IVF clinic. When it more than doubled, I was ecstatic, and yet I felt terribly guilty, feeling happy when so much tragedy had occurred.

But my happiness and excitement was short-lived. A few weeks later, my first ultrasound revealed a sac but no heartbeat. After a torturous week of waiting, another ultrasound confirmed my suspicions--I was having a miscarriage. I remember before the ultrasound appointment, I looked online at all the different stages of fetal development, and I had a feeling that my pregnancy would never progress in that way. I remember the way my husband, unable to reach my hand, grabbed my foot when the ultrasound technician told us there was not going to be a baby. I remember crying so hard in my RE's office that he escorted me out the back door of his office, I think less for my own comfort than his fear that I would scare the other patients in the waiting room.

The next afternoon I was scheduled for a D & C. I took a walk in the morning, thinking this was the last thing my "baby" and I would do together. At the hospital, things went worse. As I was waiting to go into surgery, crying the whole time, I heard the patient in the next cubicle, crying herself, only for a different reason--she had just found out she was pregnant, and therefore unable to have her surgery.

After the D & C, my hcg levels would not drop. Every week, I was back at the RE's office for more blood draws. During one of them, one of the nurses (and she was not, unfortunately, one of those great nurses we all know and love) questioned me as to whether or not she should put "pregnant" as my diagnosis--technically I was pregnant, but we all knew the situation. As do so many women who suffer a miscarriage, I desperately wanted to cycle again and get pregnant as soon as possible--but my body was not cooperating. Another ultrasound revealed that fetal matter had been left in my uterus during my D & C, so I had to have another one two months later. All in all, it was not a pleasant experience.

When the chromosomal test results came in from the D & C, the nurse was reluctant to tell me the sex of the fetus, but relented after I pressed her repeatedly--it was a boy, and the chromosomal tests came back normal, leaving the cause of the miscarriage, like so many, a mystery.

Although it has been ten years since these events occurred, I can still feel the sting of them. I am often asked by clients when the pain resulting from miscarriage and loss goes away. My best guess is that it doesn't really ever leave us, although the intensity of the feelings does lessen over time.

I have often thought about writing a blog entry about coping with loss and miscarriage after infertility, but the same thing has always stopped me: I don't have any words of wisdom about this subject. To me, every miscarriage or loss just seems really, really sad. There doesn't seem to be any way to avoid that. Although it is a relatively common experience among women, infertile or no, it still seems a very personal and cutting loss. The best I can offer is to listen to and sit with all the sad feelings that come up, and to pass the Kleenex when needed. A friend of mine, after struggling with infertility, lost her baby to a chromosomal disorder at 32 weeks, and with her, it seemed like she was grieving in some sort of emotional ditch. All I could do is crawl down into the ditch with her, listen, hold her hand, and try to bear witness to her incredible sadness.

The other odd thing about recovering from a miscarriage or loss is that life goes on, and so do we. As I watched my adopted daughter today, participating in a balloon release to commemorate 9/11, I reflected that if I hadn't miscarried my first pregnancy, it was unlikely that she would be here, in this town, on this football field, releasing balloons. I could not have loved her more than at that moment, and yet I still felt sad about the little one that never was to be. So many of my clients have reported a similar mix of happiness and grief, all jumbled together. I don't think there is any way of avoiding those feelings either.

To me, it is even more surprising that on this ten year anniversary of my first confirmed pregnancy, I find myself pregnant again, with a boy, who will hopefully be born healthy and happy in a few weeks. Like all mothers and mothers-to-be, I just hope that my children and I can make it through this day together, and for all
of the days that follow.

Thursday, August 25, 2011

Our emotional relationship with embryos created in IVF: some thoughts

I have been having a problem lately keeping the pet fish in our tank alive. Despite my best efforts at following all of the rules (feeding properly, changing the water often, etc), watching the fish closely, and medicating them if necessary, I have somehow become the fish equivalent of the Grim Reaper. All of this has been upsetting, but also has felt eerily familiar. When I noticed the latest victim floating at the top of the tank at 4 am today, it occurred to me that this is because this is very similar to how I have felt about the many embryos my husband and I created through our IVFs--despite all my best efforts, I couldn't seem to keep most of those alive either.

In some ways, the argument about when life begins seems like a nonstarter to me. I know all too well that an embryo is not necessarily a person. True, it contains the potential to become a person--perhaps, if all the conditions are right. But I also know that an embryo can break your heart. When people bemoan the thousands of embryos that are frozen in storage at IVF clinics around the world, it shows me that they haven't spent enough time hanging around with embryos. I know that many of those embryos would never have a chance of becoming a baby in the first place.

It is a interesting side effect of our modern age that we can now develop an emotional relationship (albeit a probably one-sided one) with embryos. During an IVF cycle, it is very easy to develop fantasies about the embryos we create. Looking at their pictures, we can imagine them growing into our beloved children. We pin all of our hopes on them. It seems to be almost a universal psychological aspect of IVF, especially in the first couple of cycles. A friend of mine, during her first IVF, created 24 embryos. She celebrated, sure she would get pregnant with that kind of haul. "It's enough for a baseball team!", she exclaimed, as we popped the champagne. She didn't get pregnant, though, and none of those embryos survived to Day 5. She didn't get pregnant in any of her ensuing IVFs, either. Not to worry, she and her husband adopted two incredibly smart, lovely girls, and are completely happy with their family, as they should be.

As for me, my first IVF was not so fruitful. I had 4 embryos that had any serious chance of success. I remember planting four plants in my garden to commemorate them. The plants later died. One of the embryos got me pregnant, only to miscarry at 7 weeks. To honor him (chromosomal testing revealed it was a boy), I planted a shrub in my garden, only it didn't take root. The next spring, I kept waiting for it to start to grow again, to no avail. I think I finally gave up in July. I planted St. John's Wort in the same spot instead--for its antidepressant properties if nothing else.
It did just fine.

Such experiences, along with the experiences I witness among my clients, make me wonder if getting emotionally attached to embryos is at all wise. However, the same experiences also make me wonder if getting attached to embryos is somehow unavoidable. Even the most veteran, jaded IVF patient seems to harbor secret, unspoken fantasies about his or her embryos, although they are long past the point of celebrating them or commemorating them in a garden. What makes this so hard is that although not all embryos are going to turn into babies, some indeed do--and it's hard to definitively tell which ones are capable of doing that at the outset. In contrast to my first IVF cycle, my last cycle was with our one last, remaining, frozen embryo, created four years ago. We cycled to complete our infertility story, but without expectation that it would result in a baby. Now, at 33 weeks pregnant, it appears this embryo had other plans, and we are hoping for a good outcome in October. But to be honest, I never would have guessed it was possible.

If you are undergoing IVF, I would caution you to try to remember that an embryo is a possibility, not a promise, of a child. However, if you find yourself having lots of feelings and fantasies about your embryos, I think that's probably par for the course. The important thing is to acknowledge how you feel and give yourself permission to process these feelings, no matter what happens in your cycle.

Monday, August 15, 2011

A bad news week for infertile and adoptive parents; public perceptions of the infertile

Stolen children in Guatemala and China placed for adoption, and babies secretly created abroad via donor egg, donor sperm, and surrogacy for adoption in the US--it wasn't exactly been a "feel good" week in the infertility and adoption world. A judge in Guatemala recently ruled that an adopted child living in the United States be returned to her birth parents in Guatemala years after she was kidnapped and placed in the Guatemalan foster care system. According to the birth mother, she searched for her daughter for years but was not allowed by the Guatemalan government to investigate orphanages or foster homes in her attempts to find her daughter (more here). Whether or not the order is valid in the United States or will be followed is unclear at this time. In another news story, abuses of the family planning officials in a poverty-stricken province of China were described. Allegedly, government officials took children away from poor families unable to pay exorbitant fines and bribes, and placed them for international adoption. Presumably, they received a share in the donations Chinese orphanages receive for completing the international adoption (more here). In a third news story, a prominent adoption and third party reproduction attorney pled guilty to charges of fraudulently presenting several babies carried by a surrogate as available for adoption because their original intended parents backed out of the situation. These "original intended parents never existed". Rather, the babies were created at the request of the attorney in the Ukraine using donor eggs and sperm. The prospective adoptive families then paid $100,000 to $150,000 to assume the surrogacy costs and adopt the babies (more here).

All of these news stories are in their own ways shocking, horrible, and tragic. I cannot imagine the pain of parents having their children taken from them, and then finding that the government is either complicit or unhelpful in finding them again. Likewise, for the adoptive parents of the Guatemalan girl, I can only imagine their pain at being faced with the possibility of giving up their beloved child. Further, the adoptive parents of the babies of the surrogacy ring must be coping with many feelings as well, among them betrayal at being misled about their child's genetic and legal origins.

In addition, stories like this make me worry because it seems to reinforce a stereotype of those experiencing infertility--that we are out of control, so crazy that we will do anything to get a baby, even if it means stealing, lying or paying exorbitant sums of money. And that somehow, because of that, all of the above cases are actually all our fault. If you read the internet comments on the above news stories, you will see that my fear is justified.

Of course, this perception belies all facts. In none of the three stories described above did an adoptive parent do anything illegal or immoral. In fact, they were defrauded and abused just like the birth parents, presented with a child legally cleared for adoption, when in fact they were the victims of kidnapping or created under false pretenses. The guilt, desperation, and greed all lay on the other side of the equation--corrupt or unresponsive government officials, and the legal experts who are supposed to help them make sure that everything is above-board in the first place.

Further, the above stories are exceptions. The vast majority of adoptions are done in a legal manner, and end up happily for the children and parents involved. But those wonderful stories, which happen every day, don't make the newspapers or the rounds on the internet.

I've worked with a quite a number of infertile individuals, and I myself struggled with infertility for a long time. Not once have I ever, ever heard someone seriously contemplating stealing a child or doing anything illegal in order to have a family. Someone might make an idle comment, in the same way we might wish to win the lottery, or be in Hawaii instead of Chicago during a cold February day. But I've never heard any serious intent behind it, even though the desire to have children was powerfully intense.

As for myself, at only one point did I ever have the urge to steal a baby. This occurred before I had my own children, when someone left their baby, unattended, in a corner of a restaurant in which I was dining for over an hour (the baby was awake, by the way). I had the thought that whoever left that baby by itself there probably didn't deserve to have that baby, and it crossed my mind to pick up the infant carrier and walk out of the restaurant. But of course I didn't do that. Instead I pointed out the situation to the restaurant staff, and I left the restaurant without the baby.

At its base, infertility is a medical condition. As a society, we don't perceive people with cancer, heart disease, or broken bones as desperate and depraved in their search for a cure. So it seems unfair that infertility is still frequently associated with such negative perceptions.

It is truly a shame that the bad actions of a few individuals cause harm to the lives of so many. Although international adoption is controversial, it also has provided love and happiness to many children who otherwise, in their birth countries, would have had limited chances of finding their own families. Yet news stories like this tend to make it even more difficult for these adoptions to occur.

Likewise, surrogacy and donor gametes have helped countless individuals and couples create their beloved families. When the normal standards that govern these situations are bent, this is all the general public tends to see.

The public perception that somehow these unusual situations are caused by the intense, out of control desires of infertile individuals creates numerous problems for those struggling with infertility. People often can feel more ashamed or embarrassed by their medical condition, and they are less likely to discuss the situation with others. Not only is this difficult for them psychologically, it also makes it harder to advocate as a group for important things like medical insurance coverage for infertility.

It is my hope that as a community, we can help to correct these public misconceptions about infertility. Frequently, public perception changes with one person, and one story at a time. It isn't until people meet someone and get to better understand their situation that their prejudices are called into question. Although discussing infertility is a sensitive subject, it may be that if others can better understand our situation by hearing about it from us, they will think twice next time before they say something unhelpful or untrue.

Thursday, August 4, 2011

Flexibility and infertility

Lately, I've been thinking a lot about my infertility and family building career, which began in earnest twelve years ago. Perhaps, this is because, as time marches on, it is coming to a seemingly definitive end. It's been quite the adventure, to say the least, but the question that I keep coming back to is this: How did I, a woman with very serious infertility problems, manage to end up with children in the end?

As I review all the twists and turns my husband and I encountered, I have stumbled upon a few factors that I believe, ultimately, contributed to our success. Several of these factors were not in our control, but to me the most important one was flexibility, the willingness to try a different direction, even if it was not our first inclination. I can't say this was a virtue on our part, but rather a necessity--mainly because what we originally wanted, which was to have children "naturally", genetically related to both of us, and on our own time table (not to mention without significant expense), was simply not possible.

I was particularly reminded of the importance of flexibility as I read Holly Finn's excerpt of her book about her own infertility struggles in the Wall Street Journal a couple of weeks ago (which can be found here). I was moved by the following portion:

"After a recent procedure failed—we got just two eggs, and neither was fertilized—I revisited decisions and doctors.

I went back to Doc S. and asked straight out: Would a sane person bother trying again? He said, "I don't think there's anything insane about what you're doing." But he gives me a less than 5% chance of a cycle working, down from 10% to 15% when I started, and he brings up the possibility of donor eggs. That's code for "time's up."

The success rate with donor eggs is 80% on the first transfer. Many people turn to this option (one out of 10 IVF cycles in the U.S., at last count), though nearly none admit it. I can imagine using this option if I were with a man to whom I would love to give a child, but right now, I'd be match-making a couple of strangers in my womb.

I know that it's not just genes that you pass down to a child; it's also your spirit and what you believe. Still, I resist having someone else's baby.

It's because of my thumbs. The left one is long, skinny and straight—very feminine. The right is squat, thicker and curved—definitely masculine. The first is my mother's; the second, my father's. They're exact replicas. My sister has them too.

There's something about being able to see where at least some of your parts are from.

I could really identify with Ms. Finn's struggle. Part of being flexible in regards to infertility treatment requires us to experience loss. Without being able to mourn what you won't ever have, it's difficult to move on to what you could have. Although I sincerely hope Ms. Finn's treatment with her own eggs is successful, it may be that she is not medically capable of producing a child with her own eggs. That is, of course sad and unfair--but is it worth, as they say, throwing out the baby with the bathwater? This is a personal choice, of course, that we can only make for ourselves. In the end, when faced with analogous circumstances, I have chosen to hold the goal of being a parent as primary, and the genetic connection as secondary. That may not be the best choice for everyone, but it seemed to work for us. For instance, adopting our daughter from India was an amazing, albeit challenging experience, one that I would never trade for anything. However, if you'd told me a few years prior to the adoption that I was going to do that, I never, ever would have believed you. Things change.

Dawn Davenport, at Creating a Family.org, wrote a really wonderful blog post this week that also addresses this point (found here), on whether or not a child of adoption (or created in any infertility treatment for that matter) might feel that they arrived in the family as a result of "second best choice". Ms. Davenport uses the analogy of ending up in Lisbon rather than Paris as a result of circumstances, only to learn that she actually loves Lisbon far more than she could have predicted. I've also read a similar travel analogy used in regard to loving a child with special needs. Either way, the sentiment is beautiful and rings true to my own experience. Although we may really want things, in truth, we may not always be able to get them. This is not just true of infertility--it occurs in all aspects of life. Sometimes, when we refuse to give up on a specific desire, it prevents us from being open to all the other possibilities we may have.

Of course, in the case of my family, we weren't just flexible--we also got lucky. We managed to adopt in India before the process became much more difficult and restrictive. For once, we fell on the right side of the treatment success statistics. We also had jobs that provided us with time off and health insurance. We also were fortunate to have a supportive network of family and friends. For all these factors, I am incredibly grateful. But in spite of them all, without being flexible about how we achieved our goals, we just couldn't have built our family. For us, it seemed to be the most important underlying principle of our journey.

By the way, while you are reading the blog over at Creatingafamily.org, be sure to also read Ms. Davenport's post about a Dear Abby column about the appropriateness of an adoption fundraiser. It's one of the best infertility blog posts I've read lately, and really combats a lot of the prejudices and stereotypes that those of us with infertility experience!

Wednesday, July 20, 2011

Infertility, perfectionism, and the loss of the "dream baby"

The other day, a client and I were discussing the struggle of giving up the "dream baby"--that is, the idealized vision we all seem to carry around of how perfect and amazing our offspring would be. They might have their mother's eyes, or their father's smile. They are of course adorable, brilliant, and lovable beyond belief. We are sure that if we could just have one, our other problems would seem to diminish in significance, and we would be, finally, happy.

With infertility, not only must we often experience a delay in achieving a pregnancy, but we may also be forced to give up on this vision altogether, even before the baby has been conceived. Whether it is feelings about having to use medicine or ART to conceive, the involvement of third parties, such as gestational carriers, or the loss of a genetic connection to a child by building a family with donor gametes or adoption--it all starts to be a deviation from the "dream".

There are often a lot of feelings of loss associated with giving up the idealized version of your "dream baby", and I think this is one of the factors that makes infertility so difficult to experience. Except here's the thing--no matter how your family was formed, you were never, ever going to get that "dream baby" anyway. Nobody does. Perhaps those blessed with fertility and easy pregnancies can forestall this loss until after the baby is born. But even they will at some point have to acknowledge that their child isn't perfect, can be difficult, and like all of us, has flaws and areas of challenge. One of my favorite psychoanalysts, D.W. Winnicott, wrote that in fact, parents naturally have periods of being very frustrated with and hating their child, because of the demands the child places on them. He thought this was in fact an important part of the developmental process because it allows the baby and the parents to psychologically separate, which is very important for the child's emotional growth.

It is interesting to me why we seem to hold on to our visions of the perfect "dream baby", because we don't have the same expectations of adults. I don't know any perfect adults, and I bet you don't either. So why we would expect a baby, who is just trying to figure out this crazy world, to fulfill our visions of perfection, is curious. Maybe if we didn't have this vision, we wouldn't have the motivation to keep trying to create our families.

In any case, I think that realizing that the "dream baby" is just that--a dream--makes it easier for those of us who have experienced infertility to make decisions about treatment and family building decisions going forward. If your dream baby doesn't exist anyway, maybe it might matter less to you if your child was conceived in an IVF lab, or if you aren't genetically related to him or her. Giving up on the dream baby opens us up to love and accept whomever we are fortunate enough to parent, with all of their own uniqueness, talents, and difficulties.

If you are struggling with this issue, I recommend you make a list of all of the characteristics of your "dream baby". By seeing them in writing, you may be able to better understand your own expectations. It also may help you realize what you hope to gain by becoming a parent, and that there are many paths to that goal.

Although giving up on our impossible fantasies can be painful, it does allow us to engage with our realities, which, especially when it comes to children, can still be quite amazing, no matter how they come to our family.

Friday, July 1, 2011

Infertility and health insurance: the infertility therapist gets cranky

To be perfectly honest, nothing can get me quite as irritated quite as quickly as the subject of health insurance. This in many ways is ironic and possibly unfair. After all, health insurance payments constitute a large portion of my income. Also, I am fortunate to have access to quality medical insurance for myself and my children. To top it off, I spent my entire infertility career living in Illinois, one of the few states to have some form of state-mandated infertility coverage. So really, I know I should have little about which to complain.

And yet, I found myself flooded with those old familiar feelings yesterday, as the less-educated insurance company managed care employee, who had never met my client, demanded during a phone call to know why I had seen Mr. X for more then twenty sessions, and when I was planning on discharging him already. The answer, "Whenever I damn well feel like it!", though running through my head, would not have helped Mr. X get reimbursement for the treatment he needed and wanted. So instead, I played the game, repeating the phrases that insurance companies need to hear, in order to secure continued coverage. I was made even crankier by the realization that since the passage of the Mental Health Parity Act, which went into effect last summer, the insurance company really could not legally limit Mr. X's sessions. But by requiring superfluous clinical reviews, they could put another hurdle between him and his insurance benefits. If I had not followed through with their request, they could have denied his claims--even though this would not have been his fault.

Further, these types if policies have a psychological impact on clients' views of themselves. Although they may feel quite distressed or that therapy is very helpful to them, if an insurance company questions its validity, authorizes only a limited number of sessions, or denies coverage, they often feel their own experiences are invalidated. After all, the "experts" have deemed that their problems are not serious, or that treatment isn't medically necessary. This often causes a serious disruption in the treatment. Now, in addition to working on the original issues that caused them to seek therapy, we must also deal with the feelings of invalidation stirred up by the insurance company. All this while insurance companies are recording record profits--for instance, the local Blue Cross/Blue Shield organization in Illinois just posted a $1.1 billion profit for 2010 (more information here).

When it comes to medical coverage for infertility, the problems are even more severe, for the infertile have much less protection under the law than those with mental health issues. In many states, there is little or no coverage for infertility. There seem to be two main arguments for doing so. The first is that infertility treatment is very expensive and will prohibitively increase insurance premiums and health care costs. However, research suggests otherwise. A 2006 survey demonstrated that when employers did offer infertility coverage, 91 percent of them experience no increase in costs (full study available here).

The second, and to me the more troubling reason, that infertility treatment often isn't covered is that it is not considered a "medical condition". On the face of it, this seems absurd--infertility is generally caused by medical problems and issues, which prevent a person's body from functioning as it should. However, the perception is that infertility is not life-threatening--if you can't have children, it won't kill you. Of course, medical insurance generally covers treatment for a whole host of other ailments that aren't life-threatening, but nonetheless reduce the quality of life from a medical perspective (male impotence being perhaps the most famous example). Mental illness has been perceived similarly, and thus has been covered at much lower and restrictive rates. It took years of active advocacy by the mental health community to begin to change this perception and to garner support for the idea that it should be treated as any other type of medical illness. I suspect that the same type of advocacy will be required of the infertility community.

While lack of insurance coverage for infertility is problematic from a financial and practical perspective, it also troubling from a psychological one. As I have discussed in other blog posts, people with infertility have a tendency to blame themselves for their infertility and to feel a great deal of shame around it. When the insurance company confirms this by refusing coverage or payment, it then provides them with "confirmation" that their beliefs about themselves are true. In my opinion, half of the battle in dealing with infertility is trying to take the self-blame out of the equation, and instead conceptualize it as more of a medical issue. Further, feelings of shame and self-blame often make it more difficult for those struggling with infertility to successfully weave their way through the bureaucratic maze of paperwork and phone calls required to get the insurance coverage to which they are entitled.

I understand that health insurance is a business, and that insurance companies need to make money. It's clear that they are usually very successful in this respect. But it seems to me that to use societal prejudices to deny coverage to those who need to treat a medical condition, such as infertility, is going a little too far in the name of profits. Further, making it purposefully difficult for their policy holders to access their benefits by putting up red tape and road blocks crosses an ethical line as well. Hence all the crankiness.

I've been dealing with health insurance companies in my personal and professional life for the last eleven years, and I have learned a few strategies of coping with the situation. First and foremost, you have to look at any communication between you and your insurance company as a possibly adversarial one. This doesn't mean you should start off by shouting at or fighting with insurance company employees. However, you should recognize that the insurance company's interests and your own personal interests often conflict. Therefore, I suggest you do the following:

1. Always write down the name of the person with whom you are dealing, as well as the date and time of the call. This way, if someone tells you something later that contradicts the information you received, you can refer them back to this prior conversation. Most phone calls are recorded, and you can even ask them to pull the recording for the call.

2. Never assume that the first answer you are given is the correct one. Particularly in complicated situations, such as infertility, the call center employees are often struggling to find the information you request, and they don't always have expertise in the area. If you get an answer you don't like or doesn't make sense, make a record of it, and then call back and ask the same question of someone else.

3. Insist on speaking to a supervisor should any problem arise. Often, you will meet resistance at this request--the employee will tell you that the supervisor can't tell you anything different or do anything else to resolve your problem. I always tell them that I am willing to risk that possibility, and to get the supervisor anyway. Once you are successful in reaching a supervisor, get that person's name and direct line if possible, and call them every time you have a question or issue until the problem is resolved.

4. Educate yourself and know your policy. If you read your plan document, you can refer to it during conversations with the insurance company employees, and many times show them they are wrong. Also, it pays to know your legal rights in your state, in terms of coverage, appeals rules, and how to make complaints against your insurance company if necessary.

5. Don't give up. If you think you are right, then you need to keep fighting. The insurance company may not be particularly welcoming of this, but if you appeal their decision, many times it is overturned. It's hard to keep going when it so irritating and discouraging--but use your anger and crankiness to provide you with the energy you need to get the coverage to which you are entitled.

Thursday, June 23, 2011

For the infertility "veterans"--psychological implications of long-term infertility treatment

Infertility treatment, whatever it's duration, is stressful and often difficult. For the majority of people, however, it's of relatively short duration--within a year or two, a pregnancy is achieved or a diagnosis is clarified, leading to a different path.

On the other hand, there is significant subset of infertility patients for whom treatment spans many years, sometimes even more than a decade, before any sort of resolution occurs. Perhaps this occurs because there is no clear diagnostic picture, or because they have tried multiple, time-consuming ways to build their family without success. Sometimes, life circumstances require them to take longer breaks from treatment. Whatever the case, being in infertility treatment for a prolonged period of time can definitely take its toll on a person.

Bitterness is often the main worry of the veteran infertility patient. After so many disappointments, it can feel hard to be hopeful for the future. Watching friends, family, and coworkers create their own families with less effort and stress makes them feel chronically isolated. Despite their best efforts, these feelings may seep into other aspects of their lives and relationships.

Further, one of the hardest parts of infertility "veteran" status is that after years of trying and failing, an individual can start to feel alienated even from the infertility community itself. I have had more than one client in this situation discuss how they feel they are left behind by all of their infertility friends who go on to have treatment success. Unbelievably, he or she begins to feel envious of other infertility patients. It can start to seem that all the other patients in the waiting room have a better chance of success. When listening to the emotional experiences of "newbies", or those just entering infertility experience, the "veteran" often feels irritated and impatient. The mix of hopefulness along with the anxiety that is so common in the beginning stages of infertility treatment is often painful to hear--the veteran remembers all too well how he or she used to feel hopeful as well, only to end up with multiple painful disappointments. Usually, the veteran infertility patient feels ashamed or guilty about feeling envious, impatient, and irritated with other people, because he or she really wants to be helpful and share his or her hard-won expertise. It is often difficult to recognize that in addition to our altruistic impulses, we also experience negative emotions such as envy and anger. Sometimes, this dilemma can have a further negative impact on the veteran's self-esteem, on top of the damage done by years of protracted infertility.

On the positive side, veteran infertility patients have almost always learned from their prior experiences, and are extremely wise and educated participants in their treatment. They have a clearer idea of what they expect from their doctors and clinics, and they usually make excellent treatment decisions. In addition, they know from experience they are resilient, and that they are survivors. They can be empathic to others who are suffering from a variety of life crises, because they have themselves been in crisis for years. They understand how complex emotions and relationships can be. I believe that when veteran infertility patients do become parents, they are extremely well prepared for the stresses involved in raising a child.

If you find yourself in the "veteran" camp, know that you aren't there all by yourself. For instance, I'm right there with you--with an eleven year infertility treatment history (or as I jokingly call it, an "infertility lifestyle"). It's important for infertility veterans to recognize all the knowledge and strength they have gained from their experiences. Learning things the hard way is probably the most effective form of education, and being an expert has its advantages.

Also, I think the most important thing infertility veterans need to do is to keep trying to achieve their goals, in whatever way they feel will be most successful for them. The temptation to give up is strong, especially when faced with the possibility of future disappointments. However, the risk of profound future regret is real. Thus, endurance, and lots of it, is vital to this process. In order to maintain their ability to keep going, infertility veterans must take special care of themselves to ensure that they do not become emotionally and physically depleted. Being in a chronic state of crisis is exhausting, and it requires good emotional support to not become overwhelmed. Further, pacing is key here--a person can't be full-steam ahead in infertility treatment all the time! Making time for pleasurable personal interests--hobbies, friends, travel, etc., can be really helpful.

Finally, I sincerely hope that if you are an infertility veteran, your infertility career will be over soon, and you will soon have the family you for which you have worked so hard! I would love to hear about your own experiences and perspectives! As always, please let me know if you have any questions, comments, or suggestions for further topics.

Monday, June 13, 2011

When infertility happens to good people: bad luck or somehow "meant to be?"

How many times have we heard the cliche that "everything happens for a reason"? On the face of it, it is a very tempting thing to believe, especially if it involves a good outcome. Of course, we were meant to be at the party where we met our partner, or to happen to run into that old friend who told us about that latest job opportunity. It seems many people believe that much of what happens to us isn't due to chance, but is somehow preordained. This usually provides a measure of comfort; life is not a random series of events, and it usually involves some benevolent spiritual force that is looking out for us, and has our best interests at heart.

It all works well...until something bad happens. Then the once-comforting belief now raises a bunch of unsettling questions. If the bad event was meant to happen for a reason, what was it? For instance, why do natural disasters happen, or do little children suffer painful and horrible illnesses? The answers are often not immediately apparent.

When experiencing infertility, the idea that it may have happened for some higher purpose can be troubling. I cannot count the number of times I have heard clients struggle with this issue, and they always seem to come up with the same answer: for some mysterious reasons, they are not meant to be parents. This worry usually only increases the painfulness of their situations. They cannot help but reflect that the situation seems so unfair. There are so many examples of people who are clearly problematic parents but who seem to have limitless fertility. They search their life for hidden sins or exaggerate the importance of minor flaws, all in the service of discovering the "reason" their infertility has happened to them. Eventually, they come up with quite complicated, convoluted theories about their alleged unfitness to parent, almost all of which appear, to me at least, to be patently untrue.

In addition, those struggling with infertility often must also contend with the comments others make about how "when it's meant to happen it will", or how they should just relax and trust God or fate or whoever or whatever is supposedly in charge of these things. These comments often add to their worries about themselves as potentially unfit parents. Further, they now are concerned that the feelings of sadness, impatience, and anger they feel aren't normal--shouldn't they just "relax and let it happen"?

Although I would never claim to have the answers as to whether or not things happen for a reason, I do know this: I have myself been infertile for a long time, and I have talked to many people who have also struggled with infertility, as well as people who have suffered many other types of terrible losses. I myself have never been able to piece together a convincing reason that all of these bad things happened, either in the individual cases, or collectively. Rather, I think that it is more likely that there is a lot of random chance at play. Out of 100 couples, 8 of them will experience infertility for separate and different reasons. I happened to be in the part of the population that is infertile, for various medical reasons, some currently diagnosable and some not. If you are dealing with infertility right now, I think the same is probably true in your case. I doubt it has much to do with your personality, your goodness as a human being, or your fitness to be a parent.

The downside to not believing that everything happens for a reason is that it is, from an an emotional perspective, scarier to live in a world where events are affected by random chance. After all, that means that all bets are off; anything could and might happen, even if it is not particularly likely. On the other hand, it does save us from creating explanations of difficult or tragic events that cause us to feel terrible about ourselves, and that seem unlikely to be true. Plus, it makes us appreciate our good fortune when it occurs--it isn't just "meant to be". It is the result of some good luck and our hard work combined. This can help build self-esteem. Further, we can be more empathetic with others who have experienced misfortune as well, for we understand what it feels like to end up on the wrong side of random chance.

Monday, May 30, 2011

The great divide? "Us vs. them" feelings and infertility

Sometimes when things get ugly, your real feelings reveal themselves.

Such was the case during an argument I had with my husband when I was pregnant. I had my 20 week ultrasound coming up, and I really wanted him to attend the appointment--I was nervous I would find out something was wrong with the baby, and I also wanted him to be part of the experience. He wanted to go too--but his boss at the time had different plans. Although he had blocked the appointment time on his calendar out for a month, his boss was insistent that he go out of town that morning, and only that morning, to soothe the worries of a nervous client. To my husband, attending the meeting didn't seem like a good idea in any case, because he would not be available to work with the client permanently. When my husband explained both his general reservations, and that he had a personal obligation and could not attend the meeting because he had a medical appointment, his boss was not pleased. He repeatedly pressed him to reveal the reason for the appointment. When, under duress, my husband told him about the ultrasound, his boss was quiet for a moment. Then he said, "You know, I have four children, and I never went to any of their ultrasounds. I don't think that's very important. What's the big deal anyway?" He told my husband he needed to go home and think about his priorities.

You can imagine the argument that ensued later that evening. I was shocked that my husband began to question his own decision to go the appointment. "Is it really that important?" he asked. "Are you kidding me?" I responded. "Don't you remember what we've been through all these years? And what it took to get to this point? Half a pregnancy under your belt, and you are already thinking like a breeder!" The word, ugly, fell off my tongue.

Now it was his turn to look shocked. He paused and said angrily, "Don't you ever, ever, call me that again!"

That's when I realized it--"breeder" was now the most vile thing we could say to each other. It was the ultimate throw-down in our relationship. It was clear even though we were not conscious of it, because of my infertility, we both felt like we were in a minority group, separated from the rest of the fertile world.

To me, that's a real problem, because most of the people whom I love have no fertility problems whatsoever. I don't want to feel separate from them. On the other hand, I can't deny the fact that infertility is often painful and unfair, or that many times, people without fertility issues say insensitive and thoughtless things. Or worse, that some people, like my husband's former boss, take their fertility and good fortune for granted.

In my conversations with others with infertility, I know that my husband and I aren't alone in this struggle. Too often, the infertile folks feel left behind, out of sync, and separated from the rest of the world. While they are undergoing treatment and enduring disappointments, the rest of their peers are, seemingly effortlessly, having babies. The situation, by its nature, is divisive, with its "have and have not" undertones.

I have come to realize that one of the great tasks of life, at least from a psychological perspective, is to be able to honor your own unique experiences while simultaneously recognizing the different experiences of others. It takes a lot of emotional energy and maturity, and it is hard to do when we are in pain. However, I feel that even in the throes of infertility treatment, it is vital to try to do so. Although others may never be able to understand us and our experiences, we must still try to understand them. Without this, we risk being permanently cut off from the 92 out of 100 couples who do not struggle with infertility, even if it is in unconscious or subtle ways. This can keep us from fully dealing with our feelings of anger, grief, and loss, and can prevent us from moving forward after our infertility issues have been resolved.

Thus, although it is doubtful that my husband's boss could ever understand my feelings about my ultrasound, I realized I must try to understand his emotions. It seemed that he hadn't considered that there was anything to be nervous about during his wife's pregnancies, and that he was lucky enough that everything went well. That he didn't seem to fully value his own good fortune, and that he would clearly pick a client above his family, struck me as sad. I wondered whether or not, in the long-term, he would feel good about these choices. Seeing him as a person struggling with his own issues, and not just a "breeder", helped me to bridge the divide between myself and the fertile world.

I would love to hear about other experiences with this issue. Do you feel separate somehow from the fertile people in your life? If so, how did you deal with it?

Thanks so much for reading, and as always, if you have any questions, or have any ideas for future blog posts, please let me know!

Thursday, May 26, 2011

Do mind/body programs significantly raise IVF success rates? A new study.

I stumbled across this article the other day, which can be found here, describing a new research study by Alice Domar, Ph.D., et al. It will be published in the next issue of Fertility and Sterility. They authors found participation in a mind/body treatment program during IVF cycles significantly improved success rates (52% in the treatment group vs. 20% in the control group). Mind/body treatment is usually offered once weekly for several weeks in a group setting. It combines cognitive behavior therapy, mindfulness and relaxation therapy techniques, and yoga.

At first, I was excited by this news, as I've been a fan of Dr. Domar's work for some time. I think that she has created a very helpful, cost-effective clinical program to help individuals deal with the stress surrounding infertility treatment. However, I was also curious to see the details of the study, because prior research has not consistently demonstrated that participation in a mind/body treatment program is correlated with an increase in treatment success. Further, it often seems that when study results are reported in the mainstream media, they results are often misunderstood or presented as conclusive facts.

The study, which can be found here, was done with 143 women beginning their first IVF cycle at Boston IVF. The women were randomly split into two groups. In the treatment group, the women were offered 10 weekly mind/body sessions. In the control group, the women received spa gift certificates every three months. The two groups of women were not significantly different except for two variables. The women in the treatment group were more likely to work full-time. Also, the embryos of the women in the control group were much more likely to be fertilized using ICSI. This was probably because the women in the control group had a much higher rate of male factor involvement in their infertility treatment (20 percent versus 8 percent in the mind/body treatment group).

The study followed the women over two IVF cycles. In the first IVF cycle, pregnancy rates were the same--43 percent of the women in the treatment and control groups had confirmed clinical pregnancies. However, in the second IVF cycle, the women in the treatment group had a significantly higher pregnancy rate--52 percent--versus the control group, who had a pregnancy rate of 20 percent.

The authors theorized that the reason there was no significant difference in the pregnancy rates during the first IVF cycle was because most of the women in the treatment group had not actually received the mind/body treatment yet. They had predicted it would take longer for the women to start cycling, and the mind/body program is not continuously offered at all times. They argued that the pregnancy rates were higher for the treatment group in the second IVF cycle because by then, almost all of the women had actually attended at least six to ten treatment sessions.

On the face of it, all of this sound pretty good, right? However, when I started really looking at the numbers, I became less convinced. To me, the first troubling issue with this study is that the treatment and control groups were not really diagnostically similar. In the control group, male factor infertility was a much more prevalent cause. Indeed, when the authors reran the statistical analyses to control for male factor infertility, the difference between the second IVF cycle success rates were no longer statistically significant.

Further, the study had difficulty recruiting, and in some cases retaining, participants. This meant that for the second IVF cycle, in which they found their significant results, there were only 21 women in the treatment group left, and 20 in the control group. With such a small sample size, it is difficult to make generalizations to the general IVF population. As the authors point out in the article, it may be that women who are willing and able to participate in a research study, especially those who can attend weekly treatment sessions, may be different than women, who for whatever reasons, cannot. These differences, not the mind/body treatment itself, may be the cause of their higher pregnancy rates.

Thus, I think it is premature to conclude that mind/body programs can significantly improve pregnancy rates for IVF. Further study in this area clearly needs to be done to provide us with more information.

I realize touches on a controversial issue, because there are so many strong and conflicting opinions about whether stress plays a role in causing infertility. For many, the last thing they want to hear is that their own emotions are causing their infertility woes. In contrast, others would love to believe that if they could just change their feelings or mindset, they could transcend the physical difficulties they may have. To make matters worse, the research in this area is all over the map, with some studies showing that stress or depression impairs fertility, others showing it has no effect, and some showing that moderate stress increases fertility rates.

Regardless of the research on pregnancy rates, I still believe that mind/body programs can be very useful during infertility treatment (and probably during a lot of other life difficulties, too). Anything that helps us deal with stress, reconnect with our bodies, and provides support is beneficial. But I wouldn't go into mind/body treatment expecting it to significantly increase your chances of achieving a pregnancy. The way I see it, it might help some people with certain diagnoses to conceive. However, there are also probably some people for whom decreasing stress levels won't change their physical situation, and their chances for pregnancy would remain the same.

Wednesday, May 11, 2011

Regrets and infertility

One of the most difficult issues that individuals struggling with infertility face is that of regret. Whether it is about treatment decisions, or decisions about when or with whom to start trying to have a family, regret can be very difficult to tolerate.

I think I have always been particularly sensitive to feelings of regret because even as a young child, I was very aware of my maternal grandfather's own regrets about his life. He always regretted not pursuing higher education when he had the chance, and expressed bitterness about his choices. In my own life, I have used these memories as a constant warning. I frequently find myself thinking about how I might view my decisions in the future. Although I feel that this has helped me make some good choices, it has hardly made my life regret-free.

I have come to the conclusion that despite our best efforts, it simply isn't possible to avoid having regrets entirely. The cliche that hindsight is always 20/20 is oft-repeated because it is true. But in addition, I think that no matter how much research we might do, and no matter how much we weigh the pros and cons of things, we sometimes only learn things the hard and painful way. There is little more instructive than a profoundly painful experience; we usually learn the complicated nuances of that situation very thoroughly and quickly.

Of course, infertility treatment usually presents all sorts of complicated situations and decisions. The best course of action is often not obvious. So we must make decisions using the knowledge, abilities, and emotions we have at the time. When they turn out to be decisions we later regret, it is usually because we learned so much dealing with the aftermath of those decisions. We are now functioning with a whole new level of knowledge and expertise. With our new vantage point, we now see the better option. So in a way, without making choices that we later regret, we may be unable to develop the knowledge and judgment we will need to ultimately succeed. Feelings of regret are, in actuality, the "cost of doing business".

For me, I have struggled with regrets that I did not pursue IVF right away when I first learned I had infertility problems. My RE at the time told me that I was subfertile, not infertile (history has proven it otherwise), and thus I continued trying on my own, and then tried less aggressive treatments to no avail, for almost 2 years. Little did I know that each month, my FSH was rising and my ovarian reserve was declining at a rapid pace. However, at the time, I didn't really know to even ask about those problems. Once I figured out what was going on, however, I was able to change my attitudes about treatment, and eventually achieved success. Now, of course, in my work with my clients, this is an issue I investigate right away--because I learned about it the hard way, it is almost a reflexive response.

Thus, I think problems with regret arise only when the regretful feelings cause a person to become unable to move forward in their lives. Perhaps they now have a crisis in confidence, and feel unable to trust their decisions. Or as my grandfather did,perhaps they blame themselves for circumstances that were out of their control. In truth, my grandfather could not have pursued college when he was young because my grandmother became seriously and chronically ill, and he needed to make as much money as he could to pay her medical bills.

If you find yourself struggling with feelings of regret about decisions in your infertility treatment or family-building choices, it is important to keep in mind that regret is unavoidable. However, being stuck or paralyzed due to these feelings is something we can change. Forgiving yourself for not knowing then what you know now is an important part of this process.

Thursday, May 5, 2011

Unexpected help, unlikely alliances, and other surprises along the journey of infertility

For me at least, experiencing infertility has been a life changing experience. Perhaps most profoundly, due to my infertility, I found myself traveling down paths in life I would have never predicted. In so doing, I met some amazing people, and developed a greater understanding of myself and the world as a whole.

When experiencing infertility, it is very easy to get stuck in all the negative feelings surrounding it, simply because they hurt so much! It's also easy to focus on all the hurtful things others say and do in regard our infertility. In the shuffle, sometimes the positive, helpful, and supportive things that people do for us can get short shrift.

As a psychologist, who spends her work days helping people deal with their painful feelings and experiences, I am probably more vulnerable to focusing on the negative than most. However, during the last couple of weeks I have been poignantly reminded, due the sudden illness and death of a dear relative, of how profoundly I was helped during my own journey to motherhood.

As you may have read in my other blog posts, we adopted our oldest daughter from India when she was an infant. Our adoption process went unexpectedly quickly, and we took her into custody very soon after we had finished infertility treatment. In fact, while I was in India with her, I was still coming off all the hormones I had taken in preparation for my last-ditch (and failed) FET. Although I was thrilled to be adopting my daughter, I think it is safe to say that I was still in the process of understanding and working through my infertility experience.

Due to the legal process in India, we were able to take her into custody right away, but could not leave the country until our case was processed. Thus, we decided that I would stay in India with her for the 3-4 months it took for the court case to be completed. My daughter and I stayed with my husband's aunt and uncle, whom I had never met.

As you may imagine, I was completely overwhelmed by this experience. Getting a new baby, new family members, and a new culture at the same time was a lot to comprehend. My husband's aunt was insistent that we not hire a nanny, as is common in India, to help look after the baby, in order that the baby and I bond. I still feel this was the right decision, but being alone with sick infant, I got sleep-deprived, and thus quite emotional, very quickly. My husband's aunt had never had children of her own, so sometimes her expectations of the baby and me were a bit unreasonable. Her husband seemed a little disinterested in the situation, or perhaps a bit unsure of what to do with this fussy baby and crazy American who had suddenly taken up residence in his apartment. One day he had promised to take me to a department store after he came home in the evening so I could buy some things for the baby. I hadn't left the apartment in days because I was intimidated by the streets of Mumbai, and I didn't know where to go, so naturally I was really looking forward to this outing. When he came home, however, he said he was tired and that we would go some other time. I got very upset--and I am ashamed to say I threw a bit of a tantrum, complete with tears and door slamming. To my surprise, he came into my room a few minutes later, and asked why I wasn't dressed to go out. I received no reprisals for my behavior, just a smile.

As we walked through the streets of Mumbai, we came to an extremely busy road that we had to cross, with no crosswalk or stoplights in sight. I stood at the edge of the road transfixed with fear--how would I ever cross it? To my surprise, my husband's uncle calmly stepped into the middle of traffic, staring at the drivers with his arm outstretched--and the cars quickly stopped. Having lived in Mumbai for so many years, I am sure for him this was old hat, but to me, it was magic. Had I been by myself, I think I would still be standing there, eight years later, trying to figure out how to get to the other side. With his help, however, we crossed the road with ease.

Sometimes I think it's just as simple as that--in dealing with infertility, we all get stuck by the side of roads we don't know how to cross. And by having help from just one person, just for one moment, to show us how to do it, and to support us, we can learn how to keep going towards our goal, even if it scares us silly.

After that day, my husband's uncle became my biggest helper and ally. Whenever I needed to go somewhere unfamiliar, or to a doctor for my daughter, he went with me. If there was any sort of ruffled feathers between my husband's aunt and myself, he quietly smoothed them. And at 7 pm, when my daughter routinely started screaming for 2 hours straight, he would come and take her out the porch swing, sit with her on his lap, and sing her songs to give me a break. Of course, I tried to thank him all the time for everything he did for us, but he would have none of it. "You Americans are always saying thank you all of the time! In India, we do not say thank you to our family members, because we are just all doing our duty. Please no more thank you's!"

My husband's uncle died today after a short but intense bout with cancer, and I must say that although I am no longer allowed to thank him, I shall remain grateful to him for the rest of my life. If I hadn't experienced infertility, so severe that it pushed me onto a plane and into a far away new land, I never would have gotten to know him, or appreciate his kindness, much less get across that Mumbai street.

And that's the thing about infertility. While you are in the midst of it, it feels horrible, and often all-encompassing. It feels as if nothing good will ever come out of it. But in retrospect, I can see that it pushed me out of my comfort zone, and into a whole different life, with a higher level of appreciation for the people in my life. I am not one of those people who believes everything happens for a reason, because there are too many awful things that happen for which I can find no justification. I do believe, though, that we must make the best of the circumstances in which we find ourselves, and in so doing, we can learn and grow a great deal.

In your own infertility journey, I suggest that you also be on the lookout for support from sources you might not anticipate--chances are, at some point it will be there for you. Although it won't take away from the pain of infertility, it can soften the blow, and sometimes teach you new ways to approach problems.

Thursday, April 28, 2011

Does infertility treatment have to take over your life?

It's National Infertility Awareness Week, which is a great thing. Despite much progress, there is still work to be done to help the general public understand that infertility is a medical illness and deserves to be treated as such. Like other illnesses, it should be covered by health insurance. In addition, raising public awareness that infertility is not a result of one's feelings ("Just relax!) or one's choices ("Maybe you should have started sooner!") would be extremely helpful to those experiencing infertility now or in the future.

Still, I can't help but be struck with the irony that although the general public needs increased awareness of infertility issues, those personally struggling with it are usually all too aware of their infertility. Indeed, one of the hardest things about infertility is that it can completely take over your life--psychologically, cognitively, and practically. In this post, I'll discuss some of the psychological implications that arise when infertility is the major focus of your life, and offer some strategies about how to cope with this vexing problem.

During my first IVF cycle, I was overwhelmed by the incessant nature of treatment. Not only was I worried and anxious all the time, but the sheer physical tasks of giving myself several shots a day, and of getting to all my early morning appointments to a clinic an hour away, exhausted me. It was very difficult to fit in, much less concentrate on, that pesky job I had at the time. I don't think I spoke to my husband or friends of much else other than infertility, IVF, and how much Chicago traffic can suck (trust me--a lot). I remember joking that I had turned into an "infertilibot" and was no longer an actual person. Unfortunately, I don't think my experience was in any way unique. Almost all of the clients I have worked with have felt similarly during their cycles, especially the during first one--because everything is new, it take more mental energy to understand and process the experience.

Many times, clients have asked me how to prevent their infertility treatment from taking over their life. My stock answer is invariably disappointing, because to be honest, I think that to some extent, infertility treatment taking over your life is inevitable. Having it as your nearly sole focus is the "cost of doing business" in this situation. No matter how you look at it, the treatment it complicated, and it requires a great deal of careful attention to make sure you are giving yourself all the correct medications at the correct times. Further, it takes time and effort to follow all of your bloodwork and ultrasound results so that you can understand the treatment decisions that are made. In addition to being complicated, infertility treatment takes up a lot of time. There are frequent injections, appointments, and phone calls. So even without any emotions thrown in the mix, you have all the makings of a difficult and stressful time.

Of course, it's very rare to not have a lot of feelings about infertility treatment--so you have the added task of managing your emotions. To make it more difficult, these emotions are usually involve sensitive issues such as self-esteem, social comparison, and feelings about your body. With no extra shots or appointments, managing your emotions about these issues would be more than enough for one person--but in infertility treatment, you must manage both the practical and emotional considerations.

Although I paint a rather dire picture of the infertility "lifestyle", there are a few things you can do to make things a bit easier on yourself. By having realistic expectations, working to prevent your self-esteem from being damaged, and using distraction, you can make this situation more comfortable.

Have realistic expectations

Given the requirements of infertility treatment, in order to do it well, it must be a large focus of your energy. That's why I think it is important to be realistic about what you can expect from yourself during treatment. It's unfair to expect yourself to sail through IVF without stress, fatigue, and the occasional meltdown. Many times, I have seen clients beoome quite upset with themselves during a cycle because they can't perform to their normal level of excellence at work or at home. This only makes an already difficult situation worse. Recognizing that you can only
do so much takes the pressure off of you. I often tell clients that their infertility treatment, because of the importance of having children in their lives, has to be their central focus. All other activities are lower down on the priority level. That doesn't mean that you should stop showing up for work, or that you should let the dishes pile up for weeks, but it does mean that you may need to just do the bare minimum to get by for a short period--knowing you will catch up when it's over.

Protect your self-esteem

Infertility treatment can be very hard on self-esteem, as I've discussed at length in a few other blog posts. That's why I believe it's important, especially during an active treatment cycle, to have the following mantra: "It's a medical illness, and not a commentary on me as a person or future parent." I found myself needing to repeat this to myself over and over during my many treatment adventures. For instance, if you get a disappointing result, it can start to feel like you've "failed", even though you followed all the instructions, went to all the appointments, and did everything you could to ensure success. Keeping in mind that infertility treatment, at it's core, involves medical issues that we often can't control, can be comforting in these situations.

Distraction is your friend

Sometimes, the only way to get your mind off of infertility during treatment is to provide yourself with frequent mental "mini-vacations", whether they take the form of going to the movies, reading books, or fun activities with your partner or friends. It's important to remember that because you are preoccupied, it will be more difficult to distract yourself than normal. That's why you need really, really good distractions--things that are special treats, and things that you absolutely love. Although such distractions can be short-lived (because you have to do that next round of shots at 8 pm, for example) they can be emotionally replenishing. Additionally, they give you something to look forward to, and help pass the time until the cycle is over.

Although being in infertility treatment is difficult and can be all-consuming, if you must continue in treatment, it does get easier. As someone who has actually lost count of the number of IVF transfers I've done--is it 8 or is it 9?--I can say with confidence that the coping skills you develop during the first cycles definitely help you out in later ones. As long as you set realistic expectations for yourself and your cycle, you will survive it. Infertility treatment doesn't last forever, and before long, you will be able to focus on other things.

Thursday, April 21, 2011

Are some types of infertility evolutionarily advantageous?

I read a really fascinating article in the most recent issue of Fertility and Sterility, which can be found here. The article, by Azziz, Dumesic, and Goodarzi, discusses the ancient existence of polycystic ovarian syndrome. The authors investigated how a disorder, which causes subfertility or infertility, could still persist at a relatively high level in modern times--theoretically, wouldn't it have been "bred out" of the species? It appears that increasing rates of obesity in Western cultures has not caused an increase in the rates of PCOS, so it is unlikely that change in diet has increased the prevalence of PCOS in moden times. The authors offered an intriguing explanation--that for much of human history, having PCOS has actually been advantageously adaptive, meaning that women with PCOS were more likely to survive and pass on their genetic material to the next generation.

It seems likely that PCOS actually had several adaptive advantages. In hunter-gatherer societies, food was often scarce. Women with PCOS, because of their insulin resistance, use food resources more efficiently. Their capacity to store food energy is greater, and they expend fewer calories, making them better able to survive times of starvation.

Further, because PCOS frequently causes subfertility rather than total infertility, women with PCOS had fewer children spaced farther apart in time. This was advantageous in a number of ways. With no or limited birth control, women often spent much of their life pregnant or giving birth. Even in the recent past, childbirth was extremely dangerous for women and was the top cause of female death. Thus, limiting the number of childbirths increased a women's likelihood of survival. In addition, by having fewer children, women with PCOS were more able to secure their children's survival--they more easily garner sufficient resources for them. Furthermore, children were more likely to survive if they were being raised by their biological mother, so the fact that women with PCOS had longer lifespans further enhanced their children's survival rates. In sum, it seems that for most of human history, having PCOS was actually a blessing, not a curse.

I think that looking at PCOS from the evolutionary perspective in this article has some valuable psychological implications. Most importantly, I think it is useful for anyone who is currently struggling with PCOS to realize that the disorder actually has some very important adaptive advantages. This will help them have more positive and less conflicted feelings about their bodies. Too often in infertility treatment, we end up feeling as if our bodies are vexing or failing us. Realizing that our bodies are actually trying to help us, although admittedly in a frustrating way, can be a reparative experience.

Looking at PCOS from an evolutionary perspective also made me wonder if there are other infertility diagnoses that have some of the same survival advantages. For example, could premature ovarian failure similarly enhance a woman's, and her offspring, chances of survival? When dealing with infertility, it is very easy to forget that for many men and women, both throughout history and in the present-day world, fertility has actually made their lives incredibly difficult. Perhaps the grass isn't always greener on the other side of the fence after all.

Monday, April 11, 2011

Does age matter? Psychological implications for women of the age of onset of infertility

Infertility is a label that encompasses a vast diversity of medical diagnoses and life circumstances. Although 1 in 8 couples will struggle with infertility at some point during their lives, their individual experiences can be quite different. One such difference is the age of onset or diagnosis of infertility, as infertility can occur at any point during a woman's reproductive years. In this post, I'll discuss some of the different emotions infertility can produce depending on the age of the woman involved. Although age also plays a role in how men experience their infertility, it seems to be less powerful factor than for women, for whom age and fertility potential are closely linked. Thus, I'll mainly be focusing on this issue from the female perspective.

Psychological implications for being diagnosed while "young"

Although everyone's experience is different, it seems that for the "under 35" set, certain emotional themes are more likely to come up when infertility occurs. The main one I see in my practice is a feeling of shock, especially at the beginning of diagnosis and treatment. In the majority of cases, women who have always enjoyed good health and normal gynecological functioning assume that they will be able to have children without help as long as they don't "wait too long" and start trying in their 20's or early 30's. It is thus often difficult to accept that there is a problem.

Once the knowledge that there is a problem sinks in, it is often accompanied by feelings of failure and low self-esteem. I have heard so many wonderful, successful women tell me that because they are having difficulty conceiving a child, they feel inferior to their peers. They worry that they have done something wrong, often on a karmic level, to cause their infertility. They tend to feel angry at and betrayed by their bodies--why aren't they working in the manner nature intended? Further, these negative self-feelings come at a time when their friends, relatives, and peers are busy building their own families, seemingly without effort. Thus, women in the "under 35" age bracket tend to feel left behind from a developmental perspective, and can often experience social isolation. To make matters worse, because they are in the typical family-building time of life, they are often subject to intrusive questions on the parts of others about when they are going to have children. Additionally, they may be the unhappy recipients of uniformed but perhaps well-meaning lectures about how they shouldn't "wait too long to have a baby or (insert bad outcome here)".

Psychological implications of being diagnosed with infertility when a little "less young"

Women in their late 30's and 40's often have a somewhat different experience of being diagnosed with infertility. For them, the shock of an infertility diagnosis often seems to be less intense. It is fairly common knowledge that fertility potential decreases with age--thus, women diagnosed a little later in life often aren't totally blown out of the water that they must contend with this issue. Instead, they often deal with intense feelings of self-blame and recrimination. "If only I'd started trying when I was younger!" is a refrain I have heard many times, even though for these particular women, starting a family at an earlier point in life was often a difficult or impossible choice for them. In addition, women dealing with infertility in their late 30's or 40's must also endure comments from others that that they waited "too long". These women may also feel developmentally out of sync with other women their age, who now have children or have decided to live child-free.

As an aside, it seems that when a woman is in the "less young" age bracket, it is often assumed that she could have had children earlier if she had chosen to, and thus the cause of her problem is more volitional in nature. However, I suspect that many women may have had preexisting infertility conditions all along, but may have simply been unaware of it. I myself was diagnosed with infertility at age 30; but if my life circumstances had been such that I hadn't started trying until now, in my early forties, I would have no way of knowing that at least for over a decade, I was infertile. As I have a talent for self-recrimination, and seem to take it up at every available opportunity, I am sure I would be focusing on how I made the "wrong choices" right this very minute. But in reality, it would be entirely inaccurate.

No matter what your age when your infertility is recognized, it is important to be aware that the timing of your diagnosis may affect how you experience your infertility. In particular, be try to be alert for feelings of low self-esteem, isolation, and self-blame and recrimination. By better understanding those feelings from a developmental perspective, it will be easier to acknowledge what I consider to be the timeless truth of infertility--that it probably isn't anyone's "fault".

Thursday, March 31, 2011

Infertility and George Washington: Integrating experiences of infertility into a life narrative

It's spring break week and my family has been traveling through Washington DC and Virginia, visiting family and sightseeing, predominantly at historical sites. This simultaneous emphasis on my own personal history while learning more about American history has reminded me of the importance of creating a narrative about one's life. By telling your own story, you often integrate separate parts of your life, creating a more coherent sense of self.

Integrating your experiences with infertility into your life narrative is an essential part of understanding how it has affected you. For example, as we drove through the area of the country my mother's ancestors lived, I found myself thinking about how in retrospect, past generations of my female relatives have also struggled with infertility, although it may not have been diagnosed or treated. I also found myself wondering how surprised (most likely pleasantly) my relatives might be to learn that a beautiful, self-possessed girl born in India was now a member of their family.

In addition to my own story, I also discovered another narrative of infertility in a place I didn't expect to find it. During our visit to Mount Vernon, George Washington's home, I heard repeated references to his raising of his wife's children and grandchildren (Martha was a widow when she met George and had two living children prior to their marriage). However, I didn't hear any mention of any children he and Martha had together. My "infertility antennae" went up, and so when we got to the hotel, I started Googling. Sure enough, it seems that George Washington himself most likely suffered from infertility. There was article published in Fertility and Sterility in 2004, which can be found here, which reports that George Washington was most likely infertile due to a prolonged infection with enteric tuberculosis. Like most men of his time, he blamed his infertility on his wife. However, it seems that Martha's prior history of four successful pregnancies suggests that George Washington's own fertility was most likely compromised. Further, the article describes evidence that George Washington had wished to have children and was saddened upon the realization that this probably would never happen for him. By all reports, he loved children and enjoyed the time he spent raising Martha's children and her grandchildren.

The article's author, John Amory, also speculated on how George Washington's infertility may have affected his professional career and the development of the United States. Did his disappointment about not having any children of his own fuel his ambition and resolve? Was George Washington more motivated to nurture talented young men, thus strengthening the new country and its emerging government, to fulfill some of his own parenting needs? Although we may never know for sure, it stands to reason that George Washington's infertility must have shaped his emotional and professional life in many ways. Freud's concept of sublimation, in which unfulfilled desires are channeled to more socially appropriate goals (or in this case perhaps goals that are possible to achieve) may be relevant here.

Interestingly, the author noted that in historical and medical discussions of George Washington's life, his lack of children and probable infertility is very rarely mentioned. He theorizes that some historians may feel that discussing his infertility might "lessen" his image. However, to me, it only makes George Washington an even more impressive person. He was able to accomplish incredible things and change the course of history, all while struggling with his own feelings about not being able to have his own children--a struggle that most readers of this blog know is a profound one. In addition to being a hero and a great leader, he also has provided us with a model of resilience and coping. Despite his bad luck with infertility, he led a successful, rewarding, and incredible life. In the end, I think that is the best outcome for which we can hope--regardless of our circumstances.

Monday, March 21, 2011

Do feelings about infertility ever go away? Long-term psychological implications of infertility treatment

As an infertility therapist, I think the question that I am most commonly asked is whether or not the pain from infertility ever goes away. During those dark periods during infertility treatment, it can seem as if things are always going to feel as bad as they do at that moment.

I can always offer reassurance that things will indeed eventually feel better, but I cannot say with confidence that the pain of infertility goes away completely. In my experience, people do generally go on to resolve their infertility issues in one way or the other, and lead happy and rewarding lives. Even within those lives, however, there are moments in which the pain of infertility resurfaces. I will never forget feeling that familiar, bittersweet pain and envy upon hearing a friend was pregnant--except that I myself was actually pregnant at the time! It is almost as if the pain and envy had become a reflexive response, conditioned over the years. A few months of pregnancy had done nothing to extinguish it.

The above example highlights one of the ways feelings about infertility may reemerge--through exposure to familiar situations and cues. Certain dates, times of year, people, and places may all be evocative of painful experiences, events, or realizations. Although in retrospect such painful feelings are completely understandable, they often take people off-guard if they are not prepared for them.

Another time infertility-related feelings commonly resurface is during major life transitions. For example, perimenopause and menopause bring up feelings about reproduction for almost all women, but if there is a history of infertility there may be more intense feelings about closing this chapter in their life.

A history of infertility also is known to increase anxiety during pregnancy and parenthood. Because you have already experienced things not going according to plan, you become more aware of all the frightening, albeit relatively improbable, possibilities during pregnancy, childbirth, infancy and childhood. So many times, I have seen women who had repeatedly fantasied about how happy they would be once they were pregnant become overcome with anxiety once the long-awaited pregnancy occurred. Although this is a shame, I think in a certain way it's probably unavoidable given the types of infertility experiences they had endured.

Infertility is usually a profound, life-changing experience. Studies have shown it to be only slightly less traumatic than the death of a parent and on par with a divorce in terms of the stress it produces. As a striking example, I worked with a woman who experienced infertility, but then went on to have several children. Along the way, she encountered several difficulties. One of her children had a serious, but correctable medical condition. She herself experienced medical difficulties in which her own life was hanging in the balance for months. During this time, she also unfortunately experienced a great deal of interpersonal conflict and disappointment. When I asked her which one of these situations had been the most difficult, she answered without hesitation, "Infertility."

As a silver lining, I have found that each time feelings about infertility reemerge, it is an opportunity to work through them again. This can allow you to have more closure and to better understand your own experiences. With time and distance, you can see things more clearly, and may able to resolve some of the hurt feelings of the past.

So in sum, yes, it really does get better--a lot better! But when something this profound happens to us, we can't expect ourselves not to have feelings about it for a long time to come. However, those painful moments can often often contain the seeds of future psychological growth, and thus our lives may actually be enriched.