When I started working on writing my essay several weeks ago in honor of National Infertility Awareness Week, I hesitated when I got to the finished product before posting it. The theme this year of NIAW is “Join the Movement”, as many of you know. To me, that implied a certain amount of collective action, speaking for the community at large. My essay, however, focused strongly on my own experiences.
I wondered if that was actually “joining the movement”.
In some ways, it’s indisputable that I have in fact joined the movement. I live with my infertility openly. I talk about it with people fairly regularly. My friends, family, and co-workers know. I talk often about ovarian disorders in general and mine in particular with people. I posted my status to Facebook, and put up a new banner for infertility awareness week. I’ve gotten to the point where I look for opportunities to educate people in my life about infertility.
Blogging semi-anonymously stopped being a cover for something I was still vaguely embarrassed about. Now it’s more because internet content has a life of its own, and writing isn’t what I do for a living. At this point, I’m comfortable claiming my blog in real life if someone asked me about it. If you emailed me, there’s a good chance I’d sign off with my real name these days. No longer is my semi-anonymity here because of shame.
Still, so much of what I write is focused on me and my own experiences with infertility. As I was doing some final proofreading on my “Join the Movement” post, it finally hit me what made me so uncomfortable about it all.
I write about me because I don’t want to speak out of turn for other people.
And how can I?
My experiences with infertility are just one subset. One story. The treatments I need to conceive are not the treatments every person needs or wants. My choices and struggles aren’t representative of the whole infertility community. I exist as a straight, middle class, married woman with infertility linked to oligo- or anovulation from PCOS.
The infertility community is nothing if not a model of diversity. I share this disease with single infertiles, gay and lesbian infertiles, wealthy and financially struggling infertiles, infertiles of all colors and races, of every religious persuasion, of every nationality, of both genders, of many different diagnoses and reasons for infertility or loss – some of which are more or less treatable than others.
Who am I to try to generalize my experience to the whole infertility community or give advice?
There’s a way in which I join the movement, but remain a very individual person. I like speaking about infertility, even if I wish I never had first-hand knowledge of the disease. Living openly and out about infertility empowers me.
On the other hand, I don’t want to give well-meaning advice that worked out great for me, but makes another member of the community feel bad or guilty. Privacy is how some people feel empowered to deal with the disease of infertility. This is not to be confused with remaining silent out of shame, which is an entirely separate issue.
Infertility is a disease in which there can be such a terrible burden of feeling invaded. Doctors, nurses, ultrasound techs, being poked and prodded in the most private places are all part of infertility. Of course, they’ve been given permission to do all these things, but no one I know submits to transvaginal ultrasounds because they’re a tremendously fun procedure. I’ve heard the need for privacy about infertility expressed as reclaiming a sense that this is my body, my story, and no one else has a right to it.
Being asked to tell their infertility story before someone is ready can feel like another invasion.
Don’t get me wrong. I am all for encouraging people to tell their stories when/if they’re ready. I think it can bring some great healing. It’s fantastic to have people that go to advocacy day, go to their senators, loudly speak out, and help form public policy. It was an enormous help to me to read others’ stories when I first got diagnosed and it made me feel much less alone. It helped dispel the stigma, which is crucial. It also makes fertile people to understand that yes, infertility is a disease, and yes, we deserve treatment for it.
So I applaud, with a standing ovation, those who are telling their stories and coming out about infertility.
At the same time, I want to recognize the deeds of those who aren’t ready to tell their story openly, may never be ready to tell their story for the masses but have joined the movement nonetheless. Perhaps they are the quiet woman who gives another woman a hug and no trite words upon learning of a recent miscarriage. Perhaps they are the person who sits when all the parents are asked to stand in church on mothers’ or fathers’ day to show solidarity with those who are involuntarily childless. Perhaps they are the one who runs interference for someone else at a baby shower to help ease the pain. Perhaps they are the person who takes someone with a just-failed cycle out for coffee without expectations and gives that person the space to either discuss the loss openly or to have a safe space to feel as normal as possible for an hour, whichever the individual needs.
That’s why my blog post could only deal with my own ways of joining the movement. That’s why I’m so uncomfortable telling people what they “ought” to do. I don’t want to add more psychological pressure to an already great burden for many of us. Sometimes, it can feel as though there are no other ways of joining the movement except to speak out loudly and openly.
However, many have come up with infinitely creative ways of their own of joining the movement, some of them open and loud, others much more subtle but just as meaningful and supportive. Let’s make sure, in this week of speaking up and out, that we celebrate all of these ways of joining the movement.
Thoughts? Do you have some ideas or ways you’ve joined the movement that aren’t through traditional advocacy?
Visit either of these sites for more information about infertility and NIAW:
- http://www.resolve.org/infertility101 (Basic understanding of the disease of infertility.)
- http://www.resolve.org/national-infertility-awareness-week/about.html (About NIAW)