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.
Friday, July 1, 2011
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.
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.
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!
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.
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.
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.
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