Thursday, September 10, 2009

Life After Infertility Treatments Fail

September 10, 2009
Life After Infertility Treatments Fail
Lisa Belkin

There is a quiet moment in the film Julie & Julia when Julia Child gets the news that her sister is pregnant. With a quiet sob, Meryl Streep makes us understand how deeply Julia wanted a child, and how painful it was to accept that she would never have one.

Today she could have seen specialists, gone through invasive treatments and tests, spent tens of thousands of dollars, and become consumed by what moment it was on the calendar. She might well have had her child. Or she might have been one of those for whom nothing works, and for whom all the new possibilities serve merely to add weight to the feeling of failure.

Once upon a time being childless was simply the mysterious hand dealt by nature. Now it is a decision to stop, because there is always one more something to try. Shelagh Little knows that decision well. In a guest post today she writes a primer — not about how to get pregnant, but about how to move on when you don’t.


Almost two years ago, I resolved to accept that I would never have children. I was 37 and had just learned my IVF procedure had failed. Our eight-year struggle with infertility included six rounds of artificial insemination, clomid pills, hormone injections, a surgery, and countless (and sometimes painful) diagnostic procedures. Every new test and treatment carried with it the hope that this time, it would work. What I had to show for it all: a picture of three sad little clumps of cells - the embryos that didn’t implant – and no real explanation of why I couldn’t get pregnant.

Every woman facing infertility has to decide when she’s had enough, when she has reached her ethical, emotional, and/or financial edge. My sense of self-efficacy dictated that if I researched all the options, sought support from the right professionals and followed their instructions, I’d get what I wanted. I did all of these things to the point of obsession, but our options were running out. Another round of IVF? Egg donor? A surrogate? We really couldn’t afford any more treatments and we were starting to feel queasy about the risks associated with all the drugs and technology. But my main reason for calling it quits was that I was tired of feeling frustrated and desperate. I needed to stop trying so I could get back to living.

Since then, I’ve been reflective about my infertility journey and its aftermath. Infertility is defined as the inability to conceive after a year or more of unprotected intercourse. It isn’t a disability, because you don’t technically need to have children to live a healthy life. For me, infertility is more like a low-level, lifelong bio-psychosocial syndrome. My physical inability to produce children has emotional and social consequences that I struggle with, at least to some extent, every day. Here are some of its manifestations.

Family-lessness. I had thought a child would transform us from a happy couple into a proud family with a house full of love. This was important to me, because I unfortunately do not come from a loving, intact family. And the fact is that family remains the single biggest organizing principle of mainstream life. Just a walk through my neighborhood tells the story. After work, young couples chat on lawns while their children ride bikes and draw on the sidewalk with colored chalk. My husband and I are sidelined, left to feel aberrant. Infertility is a unique kind of loneliness.

Gender dysphoria. Motherhood is still central to womanhood, the magical thing that women’s bodies do. Motherhood is also socially rewarded and is a sort of proxy for femininity. In candid moments, mothers tell you that they liked being pregnant because of all the attention they got. As an infertile, I feel oddly unsexed, especially when I look at pregnant women. I cannot do that (be pregnant), so am I still really a woman? (That’s a hypothetical.)

Friend funk. It is challenging being friends with people who have children. Understandably, people who are devoting their lives to raising children want to talk about their children – the search for a good preschool, where to take a family vacation, how to install a car seat. I don’t relate, and I have nothing to add. At times, being subjected to exhaustive conversations about other people’s kids leaves me so alienated I feel the urge to get up and walk out of the room.

Meaning quest. I thought a child would imbue my life with a new sense of focus and purpose. Infertility has created a meaning vacuum. It has ignited in me a renewed sense of obligation to unearth my passions and work towards goals. Mothers often describe the experience of giving birth as the most incredible thing they ever experienced, holding their infant for the first time as transcendent, and raising children as “the toughest job you’ll ever love.” I feel the need to create comparable peak experiences and ongoing projects. There is a pressure to craft a life well lived, even though I will never raise children.

“Why don’t you just adopt?” is something I have often heard when I confide my infertility in others. What’s most interesting about that to me is that those same people usually have biological children and have never thought for one minute about adopting. After not being able to have children for so long, I am ambivalent about adoption and parenthood in general. I admire people who have adopted children, but it is not for me.

I have searched in vain for that room full of fierce, feminist ex-infertiles talking about the wonderful things they had accomplished with all the money, creativity and energy they would have expended on a child. Sadly I discovered there is no roadmap for creating a full life without children. It’s a make-it-up-as-you-go situation.

It is tempting at times to define myself in opposition to parenthood. I think about leaving our family-oriented neighborhood to live with hip urbanites downtown. I also sometimes must resist the urge to flaunt my free time and fanciful self-indulgences to my sleep-deprived, harried parent friends. I still have not quite figured out how to incorporate other people’s children in my life (something I’m told is good to do).

Writing this, I am for the first time acknowledging my own strength and courage in living with infertility and finally making the decision to be childfree. Emboldened, I ask of those blessed with their own children to consider the following: Your family is your good fortune. Not everyone else is as lucky. Please be self-aware about when, to whom, how and especially how much you talk about your children. Just as it is not flattering to be openly bitter about infertility, nor is it becoming to be boastful about one’s parental pride.

If you ask me if I have children and I tell you I can’t, a simple “I’m sorry” will do – there is no need for follow up questions or pat advice or jokes. Please also don’t blanch or act like I said something inappropriately confessional. With the amount of explicit and extremely intimate information shared freely these days, there is no need for infertility stigma.

To others who are actively experiencing the anguish of infertility, the good news is it does get better. Since the day I made my decision to stop trying, I have never looked back. My husband and I have survived what is probably one of the biggest challenges we will ever face as a couple and have created a bond and an intimacy that frankly would probably not be possible if we had a child to raise. And if I bring the right attitude, every day presents new opportunities to have a happy, fulfilling life as a woman who is not a mother.

Wednesday, December 24, 2008

Merry Christmas Eve

Good news: Yesterday's biopsy was cancelled. When we woke up yesterday Dahbi's lump was about half the size. Went from about the size of an orange to a golf ball. The vet put her on antibiotics and we're going to see how she does on that for a few days. If the lump is still there by Friday, the biopsy will most likely happen.

She started the meds yesterday - this morning the lump was about the same as yesterday - maybe a teeny bit smaller.

Monday, December 22, 2008

What is it with December and lumps?

I've been meaning to update the blog lately - a lot has happened in the last two months. However, this post is just an update of today: Our dog Dahbi is going in for a biopsy tomorrow morning - they think she might have lymphoma.

Monday, October 13, 2008

Oxford Journal Study

Since I'm still at a point where I can't put into words how I'm feeling, here's a nice upbeat little study for you:

Difficulty with acceptance of infertility
For many women, the point of acceptance of childlessness had not been reached, which hindered the decision-making process. ‘I am always going to have regrets that we can't have a child, but you have to accept what you have got rather than what you haven't. You have to make alternative plans and they don't include children’. However, for some, ‘many questions remain unanswered’, and ‘many issues unresolved’. Similar sentiments were voiced by others: ‘Facing up to the fact that you will never have your own child is very traumatic and in a sense we feel forced into the situation of being childless’, or: ‘I think it's still happening [acceptance], it's such a long process, I mean we stopped treatment in May of last year, and I still can't accept it’. Although the decision to end treatment had been made, these women were generally less positive, not only with their inability to accept biological childlessness, but of their decision. Those who went on to adopt or have less invasive treatment such as donor insemination were more likely to feel more positive about their future, and no longer viewed themselves as ‘childless’: ‘I must admit the adoption changed things for us dramatically. We had another focus and we were probably ready to move on earlier than those couples for whom adoption is not an option’. One woman was more cautious about adoption and viewed the process as socially less acceptable; ‘We were too old for adoption, and anyway, we were not prepared to take on a child who may well be psychologically damaged’.

Stress associated with IVF
A common response from women was related to the stress caused by IVF treatment, and the process of decision-making often exacerbated this. However, relief of the cyclical process of ‘treatment and stress’ was evident once the final decision to end treatment was made. One interviewee indicated that: ‘the IVF for me was an extremely traumatic experience and I just wanted it all to end’, and went on to clarify that it was her life that she wanted to end. Others reported similar feelings of depression: ‘The GP started me on antidepressants. I just wasn't coping with it all’, or: ‘In a way, I felt quite depressed, not in the clinical sense, but I felt so low, so down, in a way I had never felt before. That lasted for about two months and I decided then that I never wanted to feel like that again’.

Unrealistic expectations of treatment

Making the final decision to end treatment was influenced by unrealistic expectations of success and the inability to cope with treatment failure: ‘I suppose we were na├»ve in thinking that IVF would work first time’. Many women were initially hopeful, but eventually succumbed to despair after repeated unsuccessful cycles of IVF: ‘In the beginning there was so much hope, I mean it was something positive we could do, and now ... there's no purpose in life anymore, no relationship left. What's the point?’. Many felt that continuing treatment was their only means of suppressing feelings of negativity and pessimism. Respondents appeared to go through a period of critical self-reflection in arriving at the decision to end treatment: ‘We never thought we would still be here [having IVF] three years on, but in time your attitudes change and you are faced with dilemmas you never thought possible’.

Pressure from media and society
Prior to making the final decision to end treatment, many women had searched the Internet for information about the possibility of new treatment options: ‘I searched every web-site you could imagine. If anything, it made me feel better about my decision in that thousands of people were going through the same experience’. However, some felt that medical staff appeared uncomfortable when faced with the results of their own literature search: ‘You never seemed to approve of the information we downloaded from the Internet, but we had to explore all options before making the final decision, leaving nothing undone I suppose’. In essence, the media proved to be another source of pressure on couples who experienced a social obligation to try new technology in order to reproduce: ‘It's the whole extended family thing. It's almost like a fashion accessory—sorry to be so flippant, but you're not accepted in the same circles or the same way if you don't have kids’. One couple commented on the apparent effect of ‘monthly media headlines’ that created indecision with regards ending treatment by suggesting that significant breakthroughs were imminent: ‘You read about it [in the media] all the time, third time lucky for IVF couple or someone who gets pregnant after adopting a baby’.

Social and professional opportunity costs
Most women had spent the majority of their thirties going through investigations and treatment resulting in a sense of ‘missed opportunities’, which eventually influenced their decision to end treatment: ‘I was so drained throughout treatment and never felt sociable. We had a great social life before IVF and a part of me wanted that back so badly’. Many were unable or unwilling to share their concerns and anxieties with close family and friends, distancing themselves from potential support networks. One woman captured her own experience: ‘One of my closest friends said that I had changed since starting IVF when I called off lunch yet again. ... I didn't feel sociable, but deep down I missed the social interaction. I suppose I was afraid that someone would appear with a baby or to say that they were pregnant, and I just couldn't cope with that. I had to stop [treatment]’ Some women actually described feelings of relief at the end of treatment, with one woman explaining in detail how she could now move on with her life: ‘I wanted my life back, and I remember feeling great sadness at the thought of never being pregnant, more than that, never having a child, but also a huge relief that I wouldn't have to go through another IVF cycle and the disappointment and grief that it brings’ Being released from the incredible stressful cycle of events that surround IVF treatment was expressed by another respondent: ‘I'm still grieving for the child I never had, for my fertility, but I feel a sense of relief that I don't have to go through the emotional upheaval of another cycle and that we can now move on’. For many, infertility and assisted conception-related issues created a sense of ‘life on hold’.

Physical and emotional pressure exerted on the couples' relationship
Financial pressure and the need to balance the conflicting demands of IVF, with those of an everyday social and professional life, caused frequent conflict within the marital relationship. ‘We had spent over $22,080 on IVF; not that we grudged the money; I mean you can't put a price on a child, but it added to the stress of it all’. In addition, whether to have another cycle of treatment or not created further conflict: ‘We just couldn't agree on whether we should have another cycle of IVF. Neither of us would admit we had really had enough, as you don't want to be the one who admits defeat’ Many commented on physical and emotional pressure that IVF exerted on their marriage/relationship, often resulting in periods of depression: ‘He [her husband] would have carried on, but I couldn't have coped with another disappointment, the anger and especially the depression—I just couldn't do it anymore’. As time went by, repeated failure lead to despair and isolation: ‘The constant stress and disappointment was incredible. Looking back, I would have risked my marriage for it all [a child/children]’

Sunday, October 12, 2008

Can I take a message?

We got home from DC Saturday night. And just for future reference, spending 5+ hours in the car extremely hungover? Not recommended.

Walked in the house to messages blinking on voicemail:

1. My aunt. Calling to see how we were doing. Sending us good thoughts.
2. My grandmother. Just thinking about us, wants to know if we got home ok. She loves us.
3. My mother-in-law. Hopes we’re doing alright, give her a call when we feel like talking.
4. My mother. Since you guys are home early, we should go to this arts and crafts show.

Really. Either you get it or you don’t.

Saturday, October 11, 2008

Pardon me while I go see a movie.

Thursday was a weird fucked up day. In the hours after my doctor's appointment, I was trying to kill time between checking into our hotel and waiting on my lab work to come back. So I took myself to a movie. I was entirely too distracted for much of anything, but I can usually zone out in front of a movie. I was at the theatre an hour before they even opened, and once they did I simply asked for a ticket to their earliest showing, provided it wasn't scary. Eagle Eye. Pretty good by the way. Or at least in an action-junky-no-need-to-think-things-through kind of way.

I picked a seat right beside the door and sat there with my cell phone in both my hands - turned on vibrate, and with the little flashy light thingy on the outside turned on. A visual, a tactile. It rang just as the opening credits started.

I jumped up and was out of the theatre standing in the hallway when I heard my doctor’s voice: “16. Dammit.” It took me a split second to decipher.

16. My LH levels. They can’t go above 12 before you trigger. 4 points. Four fucking points stood between a possible successful cycle and a cancelled cycle. He asked me if I wanted to come back in for more bloodwork “We could test again – you never know…maybe the lab made a mistake…maybe the levels went back down.” Great. This is my doctor grasping at straws.

“I’m not coming back in. I’m going to see a movie.” This was my response to my doctor telling me our 5th awful attempt at having a baby was over. “I’m going to see a movie.” This was my response to hearing I will never carry a child, we will never have biological children. “I’m going to see a movie.” It’s hilariously fucked up. There has got to be some really telling statement in there about…well…I don’t even know – reality TV watchers? People voting McCain? Women defeated by infertility treatments? All of which – very fucked up.

After our diagnosis, I knew it was going to be a rough journey, but I also knew it would work. You think if you try hard enough, if you do it enough times – eventually it has to. But unfortunately, that’s not the case. We could do round after round and still end up here. We’re not willing to live our lives like this forever. But I’m having a hard time admitting The IB has won. If she were an actual person I’d kick the crap out of her.

There’s a part of me that isn’t sure I’m ending this without regret. In fact, I can’t say 100% that this is the end (and for that reason). If we had just made it through the retrieval this time and it didn’t work, I’d be able to live with that a little easier. But you know…canceling a cycle because I can’t count. Well, that’s fucking stupid.

I don’t know. We’ve decided to give it a few months, see how we feel. See how the idea of calling this the end still sits.

In the meantime…I’m out of here. Maybe I’ll go see a movie.