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

Thursday, February 17, 2011

Disclosure and secrets in infertility treatment: or how I became a sneaky liar

Some weeks ago, a few readers asked me to discuss the topic of disclosure in infertility treatment. This is an extremely important topic, and yet I have found myself procrastinating in terms of writing about it. I think this is because I myself have struggled with the decision of how much, and to whom, to reveal about my infertility treatments and decisions. With both disclosure and secrecy, problems arise, making a clear-cut choice between the two options difficult at best.

As I have written about previously here, I was actively involved infertility treatment for several years before we adopted our older daughter, and then again a few years later.

When I was first diagnosed with infertility, I was fairly open with my friends and coworkers about my situation. The decision to do so was concordant with my personality and outlook on life in general—I have always lived my life as an “open book”. At first, it was great, as I could talk about my infertility whenever I wanted to, and I had lots of support from the people around me. However, as things began to drag on, and treatment cycle after treatment cycle failed, I started to regret my decision to be open. It felt like it was my responsibility to inform the many interested parties that my cycle had failed—again. Each time it happened, I dreaded this process of going down the list and making those calls (no Twitter back in those days!) more and more. After my first miscarriage, these calls were downright excruciating. Further, as my friends and coworkers were predominantly women in their late twenties and early thirties, they were all starting to get pregnant. Consequently, many worries and discussions about how to tell “poor Lisa” the news ensued. Sometimes I would hear about their pregnancies through the grapevine, sometimes I would guess, and sometimes I would be told directly--occasionally with kindness and finesse, but often not. As you would probably expect, after a certain point, I had difficulty coping with this situation, and I withdrew from many people who were otherwise lovely friends and acquaintances.

Years later, when after adopting, I decided to return to infertility treatment, I knew I had to do things differently. So this time, I decided to consciously limit the number of people I told about my plans to two close friends, and my parents, and my brother and his wife. If I didn’t absolutely need the emotional support and/or instrumental help of the person involved, I didn’t tell them. I thought that this would protect me from having to provide disappointing news again. In addition, I wouldn’t have to hear others' opinions, informed or not, about my treatment decisions. As I already had an adopted daughter, no one suspected that I would be crazy enough to try infertility treatment again—so I didn’t get many questions, either.

I was surprised to find that not disclosing what was going on with me was more difficult than I had anticipated. To prepare for my treatment, I had to do a two-month course of Lupron Depot, which threw my body into sudden and severe menopause. I was sweating, forgetful, and miserable, but I couldn’t really tell anyone that—so I had to make creative excuses about why I kept turning red all the time. On occasion, I found myself telling lies about where I had been, or why I couldn’t do certain activities. But perhaps more significantly, I found that if I wasn’t able to talk about what was really going on with me, I basically felt I had nothing to say to people about myself. I didn’t feel good about lying to people, and I didn’t trust myself not to slip some detail into the conversation that would only make sense if you knew the whole story. I felt tongue-tied and I’m sure others noticed my awkwardness. Thus, I became somewhat withdrawn again, from an equally lovely group of friends and acquaintances.

This reticence continued into my pregnancy, when well into the second trimester I found it difficult to disclose that I finally was pregnant. When my precocious young daughter figured out what was going on, she had no such qualms though, and her first step was to share the news at her preschool’s Show and Tell day—and thus I was “outed”. Of course it didn’t help that no one believed that it was possible, so both my daughter and I were met with shock and incredulity at these disclosures. One colleague of mine heard that I was pregnant through a mutual client, and refused to believe him, instead calling me in a panic because he was concerned that our client had suddenly become psychotic.

My withdrawal and reticence began to have a negative impact on my relationships. Several people were hurt that I hadn’t told them what I was going through, or informed them sooner about my pregnancy. I am fortunate that after I explained to them what had happened to me regarding disclosure in my first years of infertility treatment, they all forgave me. To be honest though, one of those friendships really never did recover, and I still feel sad about this.

In sum, I am not sure which was the best approach—telling, or not telling. I don’t think there is a “right answer” when it comes to disclosure. Rather, I think you have to pick your poison—is it more important to you to feel like you can be honest with those in your lives? Or does it feel more important to protect yourself from the reactions and emotions of others regarding your infertility treatment? If you don’t tell people what is going on, will you have other ways of getting the emotional support you need to survive the stress of infertility treatment? If you do, and they don’t handle this information well, will your relationships be able to weather the storm?

As you can see, I’m afraid I have more questions than answers when it comes to the issue of disclosure in infertility treatment. I’d love to hear your thoughts and experiences, and as always, if you have any questions or suggestions, please let me know. Thank you for reading!

25 comments:

  1. Lisa (can I call you Lisa?), thank you for writing this. For me it's been over a 2 year road now. For the first year, DH and I kept our struggles completely to ourselves with the exception of my BFF (and I'm not sure when he finally told his). Since then it has been like a tire with a slow leak. I told a friend who I learned was also going through infertility, my BFF's husband, my aunt (who I knew would not say a word), and finally my parents -- after our 4th and final IUI failed last year. My parents have since helped us out financially, so we could do IVF.

    I just recently revealed the news to my young sister -- only 22, still in college--I just couldn't tell her until now.

    And just like that leaky tire, every time I would feel so beaten down and run over, the air would escape faster. That's how I told my aunt. I posted on fb when I was home alone and had just experienced another failed cycle. I was so down, I posted something ambiguous--and she replied and asked me to come over and have coffee. That's when it all spilled out.

    I'm sorry, this comment is ridiculously long. I agree it's SO hard to decide. For me it's just been about telling different people at different points in my journey. I told my sister because I'm hoping that we will be pregnant soon following IVF #2 --but I may regret that decision, if it doesn't work. (and the next IVF is our last shot)

    ReplyDelete
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  2. It's so good to hear that others, even therapists, struggle with this question. I didn't tell most people in my life until I got pregnant. We told lots of people we were pregnant around 8 weeks, and then I miscarried. Now just about everyone knows about my infertility, and it's fine. I prefer the honest approach. Yes, it's sometimes awkward, but overall it's good. I wonder if people get tired of hearing about it though...

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  3. when i was pregnant for the second time i was extatic and told everyone, When i miscarried the lack of support and sometimes nasty comments that followed devastated me.The phone call from my mother two weeks post miscarriage with her opening gambit of " So, are you over it now?" took the cake for most insensitive response. I told no one about the next 2 pregnancies and miscarriages. Now that i am 13 weeks pregnant (and scared stiff) I have only told 2 people i am pregnant i know that when i get around to announcing the pregnancy. people will be offended that i haven't told them i'm pregnant sooner. But if this pregnancy ends too soon i need to protect myself. To tell or not to tell is a really big question. and its nice to know that others struggle with it as well.

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  4. Who to tell and who not to is such a difficult decision. It was only when our first IVF failed that I realised how many people we had told and how many people I now had to explain to that it didnt work. Each time was heartbreaking.

    We had a tough time first round due to side effects but if we did it again, I would be more careful. Though, I thought I had kept it pretty quiet the first time - but you find yourself telling people when you need support and then perhaps regretting it when they just cant provide it!

    Tricky one!!

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  5. Lisa this post nearly made me cry. Particularly the part about as each cycle failed and dragged on it gets harder and harder to tell. This time we have done IVF in secrecy and it is really hard. On one hand it has been a relief to not have it as the sole topic of conversation with people but on the other side I feel secretive and withdrawn which is not like me either. I don't know which method I prefer I just wish it wasn't so hard (perhaps just being pregnant would be nice). Thank you for writing this. It is a post I can keep revisiting.

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  6. I made the mistake of telling my mother I had had two miscarriages, she told everyone. I didn't want them knowing, it was my pain and my burden to bear. So (as far as I know) she doesn't know about the 3rd or 4th losses. It's easier that way. I have only shared it with my dearest closest friends who I knew I could trust.

    Honestly, we are under no obligation to tell people about our private lives, and it's THEIR problem if they get upset. If they can't accept your reasons for keeping it a secret and try to make you feel bad for it then they aren't really your friends to begin with.

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  7. IVF has been the hardest journey EVER. To be precise 3 Failed IVF and final, torturous, decision not to have any more. I was 38-40 at the time and was worried about my health due to having donated my kidney to my brother 3 years prior....Anyway after reading your article above i could not help thinking about my friend (knowing my situation) telling her 3rd pregnancy story about"....this child is the immaculate conception. I don't know how this happened, hahahahaha.....". Obviously it wasn't planned but it ripped my heart out and every time she said it I got angrier. It was horrible.
    I did share my journey in the beginning but quickly stopped when my life became a "chain letter", everyone new what was going on even though i asked not to say anything. Talk about stress - and i only had 3 IVF cycles!!!!! I stopped sharing my infertility journey with everyone except my mother. She keeps my ranting and raving to herself and i'm sorry to say i take it out on her sometimes but she understands my anger and disappointment.
    My saving grace is my wonderful husband and the otherwise blessed life i have...a baby would be the cherry on top!

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  8. We've been pretty secretive about it. But, I don't think that is from any embarrassment of IF or our treatments -- I'm just a secretive person in general. People usually don't know what's going on in my life. I just don't really like to talk about myself. (Well, except on the internet where I talk about myself incessantly...)

    At this point (2 1/2 years in) our parents know, my DH's sister knows and a few of our closest friends. But, only a select few knew that I was pregnant and that I miscarried. The responses we got from them made me glad I hadn't shared much more. And, yeah, as time has gone on it has gotten more awkward to tell people. So, I basically haven't. I think, for me, I just don't want to talk about it all the time. But, at the same time, I don't want people who *do* know what's going on not saying anything -- that would make me feel worse. So, I go with nothing.

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  9. This is such a tough subject, is comforting to hear that everyone struggles with it. No one knew we were pregnant with our first loss, and was just so terrible to have to break the news of both at once (to those closest to us only). After that I started telling my mom right away with each pregnancy (have lost 4 now), because I needed the support.

    I've found that I've needed our immediate family and closest friends to know what's going on with us, because otherwise those interactions just felt fake and insincere, and was hurtful like they just didn't care. I've mostly reduced my social interactions to this small circle of people, for better or for worse, because I need to feel "safe" and like I can be however I need to be that day - hopeful, sad, frustrated. Having to "fake it" all the time is just too exhausting.

    Having found the blog community and a IRL support group has also made a huge difference -- I have an outlet to talk about what's going on, there is never any need to explain why I'm feeling a certain way (like with those who you desperately try to make understand but just can't). Was terribly lonely and isolating before that.

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  10. I just wrote a whole blog post with my view on this:

    http://stolenfertility.blogspot.com/2011/02/to-tell-or-not-to-tell.html

    Thanks, as always for picking such an important issue for your post.

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  11. This is a dilemma that all women going through infertility treatment suffer from. As you described one would think, or at least I would, that it's best to be honest with yourself and the people around you. The problem that arises from that is that then you have keep everyone updated whether good or bad news. For that reason keeping it limited to a small group of close family and friends may be the preferred way to go. But, as you said, everyone is different and can find different ways to go through the treatments.

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  12. Over from ICLW and this was such a big topic for me. I was more open book' than not, but was frustrated that by having miscarriages everyone firstly knew we were trying and secondly, because they knew, felt free to discuss my problems whenever and with whom ever. The other thing I found hard was being disappointed by the lack of true understanding until I decided that this was more my problem than theirs.

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  13. We were very secretive about our infertility and treatments for many years and I must say we still got alienated from many friends. They might not have known it for sure but I know most of them, if not all, were wondering and discussing our situation behind our backs and probably guessed that we had problems.

    Later after our first failed IVF (probably only after about 9 years of ttc) we decided to be open about our problems and told close family and friends about our IVF's, as we got sick and tired about the lying and sneaking about. At least we got some support and sympathy when it didn't work, although probably not what we needed.

    The worst for me was when I miscarried after my last IVF. No one could understand how devastating it was for us and most actually pretended it never happened. I found online support helped me the most and I have one friend IRL who gave me lots of support, because although she never struggled to get pregnant, has had 4 miscarriages already and only 1 successful pregnancy so far. So she knows how it feels to long for a baby, but not necessary being able to get it when you want it.

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  14. People need to be able to talk about the experience frankly without hearing a bunch of platitudes. I found that disclosure was safer when I was clear about my needs with friends who would respect my choices. I told many of my friends because I felt that it was ridiculous that infertility was so common and so invisible. It felt productive, like something I COULD control, to give others information about what I was experiencing in my 2.5 years of infertility. I felt more in control when I could say that it was awful and still show up for my fertility treatments. I needed my friends to tell me I was brave to stay in the game but to respect my choice to stop if I wanted to stop. When fertility became my feminist cause, I could feel a sense of purpose in my pain. Thank you for your blog. I hope it feels healing to you as it helps others.

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  15. I just finished my second cycle, and have not told anyone. This weight is heavy on me, but I am thinking about how my child may be treated, how others may feel about me taking this method (it took me quite a while to wrap my head around the process. I just don't want to hear the I told you so's. I don't want people to say, you spent to much money for this. People spend even more money on college, new homes and weddings. Why can't I spend on starting my family.
    I am looking into adoption. No one can really tell me why the fertility treatments are not producing a baby. I I thought that using donor egg was
    I don't believe in acupuncture--not sure if it fits my religious believe. Maybe that's an unnecessary hurdle I have to overcome to. I'm at a crossroad, not sure what to do? I did complete an adoption application and hope to have a phone conference on Tuesday.

    Thanks for sharing your story. I am not an open book at all. I am a stanch fighter for privacy as a conservative Christian, old fashioned law abiding citizen. I do not have an active facebook or twitter account.

    This is so hard to do alone. I am afraid. I am praying. I am 44 been trying since 2008, took a 2 year break, been trying again this past year.

    Thanks for listening. It has been my lifelong dream to be a mom.

    ReplyDelete
  16. I just finished my second cycle, and have not told anyone. This weight is heavy on me, but I am thinking about how my child may be treated, how others may feel about me taking this method (it took me quite a while to wrap my head around the process.) I just don't want to hear the I told you so's. I don't want people to say, you spent too much money for this. People spend even more money on college, new homes and weddings. Why can't I spend on starting my family.
    I am looking into adoption. No one can really tell me why the fertility treatments are not producing a baby. I thought that using donor egg was going to guarantee success. I don't believe in acupuncture--not sure if it fits my religious believe. Maybe that's an unnecessary hurdle I have to overcome too. I'm at a crossroad, not sure what to do? I did complete an adoption application this week and hope to have a phone conference on Tuesday.

    Thanks for sharing your story. I am not an open book at all. I am a stanch fighter for privacy as a conservative Christian, old fashioned law abiding citizen. I do not have an active facebook or twitter account.

    This is so hard to do alone. I am afraid. I am praying. I just turned 44 been trying since 2008, took a 2 year break, been trying again this past year.

    Thanks for listening. It has been my lifelong dream to be a mom.

    ReplyDelete
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