PLEASE NOTE: If you are struggling with infertility or are currently trying to conceive and you DON'T want to read about my pregnancy (which I totally understand), I recommend starting at the beginning of the blog (March 2010) and reading from there. I find out I'm pregnant in June 2011 so there is a lot of trying to conceive posts in between that you might find funny, helpful or relatable. Wishing you all the luck in the world!

Friday, September 16, 2016

The Persistent Infertility Advocate

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In the past couple of weeks, I’ve been teaching an “Empathy and Empowerment” presentation about how to support, relate and assist infertility patients on their journey. Yesterday, I spent a good portion of my day doing these sessions that includes many different elements of empathy, how to support and be sensitive to someone dealing with infertility and I include a list of things to NOT say to those going through infertility treatment (i.e. “God has a plan, be grateful for what you have, maybe there’s a reason, don’t give up, etc.) I also get into making sure that patients feel empowered to take an active role in their fertility treatment decisions (we tell people about the success rates of IUI versus IVF, etc.) I take great pride in not only making the “fertile world at large” aware of the impact infertility can have on an individual or couples life but also, how they can help not say something that will get them punched in the face.

As I headed home at the end of the day feeling positive, I got a comment on my blog from someone who called themselves, “Unknown”. It said,
“I have ready many of your posts as well as your piece on Recombine’s site. There are a few different definitions of Infertility but bottom line is that one who is truly infertile cannot conceive. You have two children. Can you really speak for those of us who are unable to have children? You say to find humor in it, I haven’t yet.”
To be blunt, my first reaction was annoyance as I felt like someone just pooped on something I’m passionate about. However, I decided to practice what I preach, be empathetic and publish the comment so I could respond. However, when I went Blogger to approve it, the comment disappeared. I have it in my email which is why I’m able to still have what it said. So I’m writing this post to share it (as this person clearly did want this to be shared/read) but also because I’d like to address it.

First, to “Unknown” directly: I’m so very sorry to hear things have been unable to conceive AND that this has been so tough. It’s not fair, it makes little sense and I can’t even imagine how incredibly frustrating this journey (or rollercoaster) has been for you. I thank you for bring this important point up and for your honesty.

Second, I’m going to try to explain why I remain an infertility advocate despite the fact that I do have two kids. Please know that this is something I even asked myself and even went through a period where I struggled with how to proceed in the infertility world so I’m happy to share my reasoning.

There’s a well-known and vocal infertility advocate named Carolyn Savage who I’ve had the honor of connecting with. When I was pregnant with my second child, I asked her about whether anyone who had kids could be an infertility advocate. She said to me, “Of course. That’s like saying anyone who survived breast cancer can’t be an advocate for it.” That resonated with me… but still I grappled with my advocacy role.

After a few weeks, something hit me that changed my mind and has kept me going since. When I was deep in the trenches, I was EXTREMELY private about how I couldn’t conceive. It was several years of not telling my family, friends, and co-workers. That’ why I started this blog. To privately have an outlet because I felt so guarded and quite frankly, ashamed. I felt like a huge failure and literally every time I’d get my period or fail an IVF cycle, I’d spend days in bed not talking to anyone being depressed.

If any of you know me (and some do), my guess is you’d describe me as boisterous (i.e. LOUD! ), outgoing, jokey and hopefully, good hearted New Yorker (but not as rude). When I was going through those years of treatment though, I was not any of those things. I avoided social situations, distanced myself from friends who had children or who were pregnant and stayed home silently wondering what was going to happen, how I was ever going to pay treatment or how I could get out of any event where someone was going to ask me why I don’t have kids yet.

Now here’s the thing “Unknown” – Right now, there are many, many people in the position I was in then. They are private about their struggle, they are perhaps depressed, they are not their usual selves, and they too feel like they can’t be open about what they are going through. They don’t want to share their story because they are understandably protecting themselves. Perhaps that’s why you even used “Unknown” and not your real name, which again – I understand.

For me though, its years later and I’m in a place where I can raise awareness about infertility, share my story, write for (as you mentioned) Recombine, Huffington Post and Time Magazine about infertility rights and coverage. I can go on CNN or go to Washington, D.C. to talk to Congress about increasing fertility coverage for those, who like me, had none. While someone is somewhere at home dealing with this journey, I’m putting myself out there, using my real name where everyone (family, friends, foes, the public at large, etc.)  can support me or judge me, judges what I’m saying and in the case of some of my Huffington Post pieces, make comments like, “It’s selfish to do infertility treatment. Just adopt.” I do this though to speak for those who currently can’t. My goal is make this medical diagnosis known, to raise awareness, support and real benefit coverage and in the process, raise the level of sensitivity around the topic.

I also know there are many like me in the infertility community who do go on to have children that find themselves in a tough spot. We were formally diagnosed with infertility. That was three doctor’s opinions in my case – I have poor egg quality and infertility and that was certainly the CPT code used on all of my medical treatment. However, the debate remains that if you do go on to have children, even if it is, in fact, through fertility treatment, are you still considered an infertile? I hope you’ll all weigh in on that in the comments section as I know there are varying opinions on this.

On this note though, what I would like to ask Unknown is would it be better if I was active in the infertility community and then as soon as I had kids, I left and said, “Ok, thanks! Bye!” To me personally, that’s worse. The community supported me when I needed it and now it’s absolutely my turn to support those who need it. Whether you think that’s wrong or right, I don’t have it in my heart to just peace out like that.

Also, on the note of humor, I volunteered for several years at Gilda’s Club. As you may know, Gilda’s Club was named after Gilda Radner, a very well-known and respected comedic actress who was diagnosed with Ovarian Cancer. Her husband, Gene Wilder, who also just recently passed away, said that Gilda Radner kept her sense of humor throughout her grueling treatment and right up until her death. When I volunteered in “Noogieland” which was the children’s department, one of the main overall objectives was to use humor as a coping mechanism. It doesn’t dismiss the horrible issue you’re dealing with but it can help buy you even moments of sanity. It also, I hope, takes away infertility’s power… to make fun of it and show, “I can laugh at you so f*ck you!” I’m certain not everyone sees it that way but given your options, laughing at it or letting it kill your sense of humor, I’d suggest trying to laugh at it every time.

Here’s the bottom line: Anyone who wants to be unhappy with me, my journey, and my sense of humor absolutely can. I’ll even connect you with a few ex-boyfriends if you’d like to talk smack about me. You can hate that I did end up having children as quite frankly, I can imagine that I might feel similarly. What I can only hope though is like me or not like me, you still see that I am doing all I can to help bring attention to this issue that affects one in six, and somehow do my part to help make things better for those who are going to go through treatment or for those going through treatment right now. I would hope that even if you don’t like me or get me, you’d at least respect that.

All of us, whether in the infertility closet or not have the power to make a difference. Whether we send a letter to our local Senator or HR Department about the importance and need for fertility benefits, whether we create an anonymous profile on Twitter or FertileThoughts or any other support forum you like to help support and share information with others or even if you educate just one person about infertility – that it exists, we all can be an infertility advocate in a way we choose and that we feel comfortable.

So, Unknown – I do have children and I apologize if that or my sense of humor has hurt you in anyway. If you at all feel comfortable though, I’d encourage you to do something that does make you feel empowered by helping the cause. I will never stop being an infertility advocate. Instead, I hope you join me and become one as well.

5 comments:

Tee Tee said...

Thank you for putting my thoughts into words. As one who struggled through multiple rounds of IUI, IVF & FETs and a miscarriage, I finally became pregnant in December 2015.
I am also single and was using a donor. I was so private about my journey telling only a few close friends at the start. When unexplained infertility became my diagnosis I hid under my rock and stopped telling anyone but my mother that I was STILL trying. Still injecting myself in the stomach, still paying out of pocket, still taking out loans and credit cards I could ill afford. My single status made me feel even more that people might feel I had less of a right to have a child than anyone else. I was scared, alone and infertile. I took support from online forums.
But then as all hope was lost I became pregnant. And this one stuck. I loved being pregnant but I lived with the tugging fear that only one who has struggled can relate. The relief when four short weeks ago my son was born healthy and perfect is indescribable.
But now where do I fit in? Pregnancy gave me the courage to talk about my infertility struggles in a way I never could before. I've found myself able to help others who are suffering in silence as my, now vocal stance has given some the courage to talk to me. I want to advocate for infertile people but no longer fit in with them because now what do I know?
Believe that my memory of the fight I had to conceive will never leave me. I will not complain about waking to feed my child, to change an explosive diaper or to calm his fussing. I look at him every day and can't believe it's over. grateful doesn't even start to cover it. So I do what I can to advocate for those who can't. I guess I'm an infertility survivor and your words have encouraged me to do more to help those who are too deep in the trenches to speak for themselves. Thank you.

Cristy said...

Dear Unknown,

I too am sorry you are living with infertility. It's such a painful journey and I truly hope you find resolution soon.

As far as your comment to Jay about her not being able to advocate for those living with infertility and repeat pregnancy loss, I encourage you to read this recent book review by Rachel Cusk (http://mobile.nytimes.com/2016/09/04/books/review/rachel-cusk-reviews-two-books-about-assisted-reproduction.html?referer=https://www.google.com/). You see, Jay is special because she is reaching back and attempting (very often successfully) to advocate for those living with this disease. According to Rachel Cusk, a woman who easily conceived, you have zero business trying for a baby. Your lot is cast and you are willfully setting yourself up for heartbreak. So according to Ms. Cusk, you've brought all of this on yourself.

Jay works hard to counter this. She spend her days educating the public, helping connect those living with infertility to doctors who are best qualified to help and working with organizations, like RESOLVE, to help give much needed support both to patients and their loved ones.

After reading Ms. Cusk's review, I'm thankful we do have people like Jay fighting for us. Because without her, the Ms. Cusks of the world win. And they don't think you deserve to parent.

S said...

Jay, you have demonstrated great compassion for "Unknown" in this post.

I don't actively advocate for infertility as you do (I'm happy to educate when it comes up and/or share my own experiences but it's not a formal thing). However, I have questioned whether I am truly "infertile," given that I have two children now.

For me, I decided that the fact of how I conceived my sons--through donor egg IVF--will forever set me apart from those who conceive spontaneously and/or without medical intervention. So yes, I am both a mother of two and infertile.

https://differentshoresblog.wordpress.com/ said...

Hi there, such an interesting subject! I saw your post through Balls Don't Work's tweet on Twitter just now. Your question asking whether you are still considered "an infertile" if you go on to have children through fertility treatment is definitely a grey area, and a sensitive one. I will answer this personally as a woman who was diagnosed as infertile, then failed IVF (did not get to transfer) and as a result is living childfree at age 44.
I'm worried about offending people but will just answer in the spirit of honesty. Firstly, I think anyone can advocate for infertility and I welcome everyone from all situations and walks of life! It can only be a good thing if mothers/fathers are advocating for infertile people, and also vice versa (why shouldn't infertile people advocate for parents in difficult situations too?). By no means do I agree that it's better if the person who was previously active in the infertility community then felt forced to leave as soon as they had kids. Not at all: their experience with fertility treatment is equally valid!
However, if we are talking semantics and actual wording, I do have a quite visceral reaction to someone with two children continuing afterwards to refer to her/himself as "an infertile", now, in the present. At some point, when you conceived (even with assistance), some adequate reserve of fertility was found which led to a successful pregnancy and birth. Two children were born. This is a far cry from never conceiving at all and living without children.
Is it just a question of sensitivity? I don't know. But just as asking someone who was diagnosed with infertility and then successfully conceived to leave the IF community undermines their previous experience with infertility, maybe describing yourself as infertile after having two children undermines the experience of those who never managed to have any children.
But then there is secondary infertility, which makes you by definition an infertile mother. So yes, a grey area indeed!
I don't really have an answer but I can only say that I do have a gut reaction to it: yes, I suppose it makes me a bit angry/upset to hear someone say "I am infertile too" if they have kids. It's all in the wording, for me.
But as for persistently advocating for people struggling with infertility, ignore anyone who says you shouldn't be.
I hope I didn't offend anyone, thanks for the interesting topic.

MJ said...

Thoughts on when you have kids are you still infertile: if you gave birth by your own egg/sperm, then you are an "infertility survivor" kind of like the breast cancer example. If you are parenting an adopted child, then you are an "infertile mother/father." Not sure about surrogacy and donor gametes....maybe for using a surrogate with your own goods you are a "non-delivering bio mom." Adopted embryo parents would be "pre-implantation adoptive mom/dad." I am parenting two children and have never given birth. I very much still am infertile but I'm a mom. When we do conceive and give birth that will be a first for us but our bio kids will not be first in the line up.

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