When I was deep in the trying to conceive trenches, the thought of being an infertility advocate was the furthest thing from my mind. I couldn’t tell most of my friends and family what we going through out of my own embarrassment.
I look back at that time and remember a lot of crying, binge watching Ru Paul’s Drag Race (there were never any pregnancy plot lines, which I appreciated) and drawn curtains blocking out the sun. I was buying maxi pads and pregnancy tests at the same time. I avoided anyone who I even suspected would ask me when I was having kids and being around fertile myrtles made me feel what I can only describe as 'stabby.'
When I imagined being an infertility advocate, I saw it as really putting yourself out there and boldly educating others (the fertile public, Congress, your HR department, etc.) about your own struggles and the realities of infertility. The crying, bloated, watching the Logo channel while clutching Always maxi pads with wings version of me didn’t fit this picture.
It was only after I stopped treatment and achieved a resolution (in my case, I had a son through in vitro fertilization (IVF) and another through an insane amount of random and unexpected luck) that I felt comfortable with being open about my roller coaster ride.
Step-by-step, I slowly began speaking at conferences, meeting with my local representatives, writing pieces for various online magazines and websites and all in all, raising awareness among my friends, family, and the fertile public.
What I’ve learned from being on both sides of the private/public infertility coin is that I do think there’s a way for everyone to be an advocate in a manageable way, wherever you are at in your trying to conceive efforts. You can speak at a press conference (as I have done regarding creating access to fertility treatment) or you can speak privately to your well-intentioned relative who wants to know why you’re not pregnant yet. It’s possible to fight a good the good fight with either guns blazing or with quiet little sparklers from the comfort of your couch. In this spirit, here are six suggestions on how you can make an impact as an infertility advocate.
1. Social Media
OK… before some of you recoil in horror, let me share with you how I slowly snuck out of the infertility closet. It was primarily on Twitter where I came up with an anonymous handle (@the2weekwait, which is not anonymous anymore, obviously). If you look on Twitter, you will actually find quite a few accounts along those lines. They are a private and protected safe space where you can connect with others in the infertility community, support one another, and help to educate any infertility newbies.
2. Write a Letter to Congress or Your Local Representative
While it’s true that you’ll have to sign your name, it’s still an opportunity to privately advocate on your behalf of both you and others like you who need access to fertility treatment. While some states require insurance coverage of infertility like IVF, most states don’t. If Congress and Reps are hearing regularly from the community informing them that their constituents are directly impacted, it can make a huge difference towards what legislation passes and what doesn’t.
3. Write a Letter to your Human Resources Department
This is a touch more personal depending on how big your company is and/or how well you know your HR representative. If you visit the website for Resolve, the National Infertility Association, they have sample letters you can personalize. Similar to the above, if your company knows that an infertility benefit will help retain top talent and/or help existing employees feel better about their company (and be less stressed about how they are going to pay for treatment so they can better focus on their job), they will listen. Resolve also provides data points you can share with your benefits team that will help convince them.
4. Participate in Resolve Events
And speaking of Resolve, there are many opportunities they organize for you to be involved with. There’s the Walk of Hope, support groups, Advocacy Day, National Infertility Week, etc. While this entails getting out of bed (which again, is something I struggled with), these are all safe spaces where you can connect in real life with others who have had similar experiences. Trust me – it’s humbling and motivational to talk to people who get it.
5. Advocate for Your Own Reproductive Health
Sometimes, simply being your own patient advocate is one of the most powerful things you can do. Do you suspect you have endometriosis or PCOS? Do your research, record your symptoms and see a reproductive endocrinologist armed with insight! Do you know if a freeze all cycle would be beneficial to you? Are you aware of Single Embryo Transfer? Do you understand preimplantation genetic screening (PGS) and whether it’s something you should consider? The more you know, the more you can take an active role in your fertility treatment.
6. Share Your Infertility Experience
Whether it’s with a therapist, your spouse or partner, in your own journal, a blog, with others in a support group (online or in person), with your friends and family (or just the ones you feel will be supportive) or even if it’s just one trusted cycle buddy, I encourage you to share your experience. Even if you are not changing laws or company policy, sharing your experience can be a grassroots effort towards changing minds and educating others in your social circle and beyond.
I know if 'me now' was talking to 'me then' saying, Hey! You should totally be out there advocating!, I would have punched 'me now' in the face. You can’t force anyone to share their story nor should you. Everyone must decide what they want to be open with or not, but I do feel compelled as the 'ghost of fertility advocacy future' to let you know that when I started being more vocal, connecting with others and sharing my story, I began to really see the power in advocacy. It was a healing process and made me feel that while infertility may have kicked me in the ovaries, I was now able to kick it right back.
Whether your journey ends with children or not, there is something incredibly satisfying and powerful about taking an issue so personal and important to you and pushing to make it better. Small efforts or big, you’re saying, Wait a minute! There is no need to be embarrassed about this! It’s a medical disease and not a personal failing. And people need to know that!
I didn’t get that then and I wish I did. So whatever your comfort zone is, I do encourage you to at least do one thing that makes you feel like you’re taking a stand, in your own way and on your own terms, to be an infertility advocate.