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!
Tuesday, October 11, 2011
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.
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.
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.
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!
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.
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.
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.
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