I am an active infertility advocate and have been since I was diagnosed with infertility in 2009.
I used social media, and at the time, an anonymous blog to quietly and carefully reach out to the infertility community. I connected with so many like me not just locally but literally across the world. If I tweeted at 3 am my concerns about my cervical mucus, I’d get a response in minutes. For every cycle and during every two-week wait, my blog readers and online friends would encourage me, support me, and with my last cycle, even donate fertility medications to me. Seriously. I received Gonal-F from an online friend in Seattle, progesterone in oil from someone in New Jersey, Menopur from Connecticut, and even, estrogen patches from Ireland. I’d come home from work every day to a mailbox filled with hope and hormones. That’s one hell of a supportive community.
I went through several years of treatment (Clomid cycles, IUI’s, IVF’s) and now, in 2017, I have two sons.
My first child was conceived through my last IVF. I had 12 eggs retrieved but only ONE embryo to show for it. We had zero insurance coverage by then and we paid for this final IVF by wiping out our entire savings account. A caring friend at the time tried to comfort me by saying, “Well, it only takes one.” My response was, “Yes, but I paid for more!” I’m sure many can relate.
I remember vividly the night before my beta test on that cycle, when my husband and I talked about how we couldn’t afford any more treatments and perhaps it was time to stop cycling and just travel. I would find out the next morning, however, that our one and only embryo did implant. He is now a five-and-a-half-year-old boy named Michael.
About a year after I had Michael, I went back to my reproductive endocrinologist. Even though we had no more savings left or any fertility coverage, I asked her if she would recommend any more treatment to perhaps have more children. Her answer was honest, which I greatly respected. She said, “You’re not a good responder so if you ever did do IVF [again], I would recommend doing just one more cycle and then stopping. Overall, I’d give you a 1% chance of ever conceiving again.”
My husband and I had a long talk about this and decided that it would be more prudent to spend money on the child we had at home then on a child we may never have. It was tough but we gave away our baby items and resigned ourselves to be a one-child family.
It was only two weeks before I turned 41 that somehow in my forties, with all my egg-quality issues, without IVF and all, I learned I was pregnant with a second child. This would be my two-year-old son, Matthew.
As soon as I delivered Matthew, I had several people ask me about whether I should continue to be an infertility advocate. I even began to question it myself. Not only did I have two children but one was conceived “naturally” (although I’m telling you – even my doctor was like, “Holy shit!” when I told her. That was a “Hail-Mary” long-shot pregnancy). I went through a period in which I stayed quiet in the advocacy world while I thought about this. I didn’t post on social media, I didn’t attend advocacy events, and I really sat down and asked myself, “Can I still be an advocate?”
After a few weeks, something hit me that changed my mind and has kept me going ever since. When I was deep in the infertility trenches, I was extremely private about how I couldn’t conceive. It was several years of not telling my family, friends, and co-workers. I felt like a huge failure and every time I’d get my period or go through a cycle that didn’t result in a pregnancy, I’d spend days in bed not talking to anyone because I was depressed.
I avoided social situations, distanced myself from friends who had children or who were pregnant, and thought about how I could get out of any event where someone was going to ask me why I don’t have kids yet. I stayed home silently wondering what was going to happen and how was I ever going to pay for treatment.
Even though my fertility journey has reached an end, I still care about raising awareness and supporting those still going through it.What I realized is that right now, as you’re reading this —really, at any moment—there is someone in the state I was in then. She is private about her struggle, perhaps embarrassed, depressed, not her usual self, and she, too, feels like she can’t be open about what she is going through. She may even be spending weekends in bed crying like I did.
When I thought about that, that’s when I realized:
A. Even though my fertility journey has reached an end, I still care about raising awareness and supporting those still going through it.
B. There are many who survive difficult situations or illnesses such as breast cancer and they still are advocates for that cause. Just because you have what is considered by some accounts a “successful” ending (and I use the word “successful” very loosely) doesn’t mean you can’t still help the cause.
And the biggest one of them of all,
C. I’m in a place in my life where I can raise awareness about infertility, share my story, and write for pregnantish magazine, the Huffington Post, and Time about infertility rights and the medical diagnosis it truly is. I can go to Albany, New York as I did last week, and stand publicly on the “million-dollar staircase” for a press conference in support of extending state insurance to cover IVF and fertility preservation for cancer patients.
I can 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 – and everyone (family, friends, foes, the public at large, ex-boyfriends) can support me or judge me – to be the voice for someone who isn’t in the position to represent herself.
Even having two children, I can never shake the person that infertility made me. I am still a diagnosed infertile. That was three doctors’ opinions, in my case – I had poor egg quality and that was certainly the CPT code used on all my medical treatment. It changed my entire life: my relationship with my husband, my career, what I care about, how I relate to others, my friendships. When someone shares her fertility struggle with me or when I hear how people who need access to IVF simply can’t attain it, I want to help. I know there are so many trying to conceive who don’t feel comfortable coming out of the infertility closet. It is for them (and the person whom I used to be) that I continue to be outspoken.
Now, let’s say you’re reading this, you’re deep in the trying-to-conceive trenches thinking, “Sure. Easy for you to say! You have kids!”
Let me ask you this: Would it be better if I was active in the infertility community and then as soon as I had kids, I left and did nothing to help others? 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.
Whether you agree or disagree, I’m doing all I can to help bring attention to this issue that, according to Resolve, the National Infertility Association, affects approximately 1 in 8, or 7.4 million, women of reproductive age that have received help for infertility in their lifetime.
Each of us, whether we are an “out infertile” or not, has 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 join an online support group or even if we just share information with others in our family, at work, or among our friends that helps educate just one person about infertility, we all can be an advocate in a way that we feel comfortable.
For now, I remain a dedicated, vocal, active, determined infertility advocate and mother of two.
Jennifer “Jay” Palumbo is a freelance writer, public speaker, infertility/women’s rights advocate, former stand-up comic, author of the blog The 2 Week Wait, and proud IVF Mom. You can follow her on Twitter at @jennpal (which is non-uterus related) or @the2weekwait (which features fertility-related fun).
Listen to stories, share your own, and get feedback from the community.