I'm sure you all know about Resolve's Pledge-- to talk to as many people as possible about infertility, to share your struggle with family and friends and join in the advocacy efforts led by Resolve, as I am sure you have read the recent article in Self Magazine, Breaking The Silence on Infertility that everyone was linking to recently.
I think about my silence all the time. I think about the small actions I could take, and then I think about why I'm not taking them, why I don't want to use my full name and make status updates and tell everyone in my life about this disease--insecurities, vulnerability, the need for privacy, shame. At the same time, I know that there are definitely actions I need to take.
For the past year and a half, F and I have struggled with infertility privately, almost entirely in silence and secrecy. For the first year no one knew we had a problem (F was in denial or just optimistic in that guy sort of way and I was just full of dread). We used to really debate (= me crying and ranting and F repeating,"its going to happen soon") with each other about telling family. I really needed to tell our moms. He thought IF was a private, intimate matter and really didn't want anyone to know, especially his mom. This is why his brother doesn't know and his Dad doesn't know, even though he is very close with his brother. My brother doesn't know, either, but we don't talk about those sorts of things. No one at the family dinner knows. My parents know, F's mom knows, one of my cousins knows (a cousin who is experiencing secondary infertility), one friend knows, and then my CNM, my RE and my acupuncturist all know, of course.
I have this blog which allows me to speak about it, share my experiences and support others, but I keep this community completely separate from the life I share with my family and friends. I started this blog while living away from home for 3 months. F doesn't even know I started it. For me, family life and interactions also play a part in my infertility struggle--I keep this blog separate, partly, so I can write freely about the ways family dynamics and events make infertility even harder. And as much as family tries to be supportive, infertility is very difficult to relate to if you have not experienced it firsthand.
F and I both need to find a balance between getting support from the people we choose to tell, maintaining our privacy and advocating for our health care.
And advocating for our health care is the large action we really need to take--because we, like so many of us, do not have insurance coverage for anything billed as infertility and do not live in a state where insurance coverage for infertility services is mandatory. Negotiating the heartbreak of infertility is difficult enough without having to wage a socio-political fight every step of the way. There are resources to help us with this, one of which is a letter template for HR departments and employers that I found on RESOLVE's site. F and I have no excuse not to write this letter, and no excuse not to contact our representatives again and again and again. Fertility Lab Insider has a fantastic post about infertility as a covered insurance benefit, full of facts to use in letter writing, debate and the occasional conversation with the insensitive and uneducated.
I will never be able to send everyone in my contacts a link to my blog, or even tell my partner that I am writing one, use my full name here, or 'out' F and I to friends and family, but the very least I can do is advocate for myself, and F and I can do this together.
9 comments:
Great post. I struggled a lot with telling people, and how open we've been. The longer I go in this journey, the more open I've become. BUT - I don't want to share my blog with anybody in real life, as these are scary emotions and very personal things that I share on my little spot on the web. It took me a few months to share the fact that I even had a blog with the hubs. But I finally did, and he found it (I had accidentally left it open on a home computer - stupid), read a couple posts, and complimented me on them. But I don't think he reads it, and I say some pretty personal stuff on it. Nobody else knows how to find it, and only a couple others even know it exists. But that's not because I'm hiding my infertility, it's because I'm hiding my emotions!
I haven't been very open with advocacy and promoting the cause - I really should.
Great post! I'm slowly telling more people, though it has to be kept pretty quiet b/c my boss doesn't know and she would freak about the thought of me even THINKING of doing something that would require me to take time off. :P That being said, the friends & family that I have confided in have been SO incredibly supportive. It's a very personal issue, but I've found that having a real live person to give me a hug on the bad days means SO much.
I need to get on my letter writing I think. Thanks for the links!
Thanks for the encouragement, Ladies! I'm so glad you found my links helpful.
Alex, you make such an incredible distinction, that what you are keeping private is your emotions, not your infertility. I never thought of it that way--but it is so, so true.
I've followed almost exactly the same approach as you have - being mostly in the closet and not sharing my blog with everyone (or trying not to).
So far it has worked for me.
I think Alex's distinction is spot on. The emotions are intense, and sometimes dark and ugly, not easy to share with people who don't already know what it's like.
(Arrived from the Crème de la Crème list)
This is something I struggle with, too. I find myself mostly keeping quiet, but also hoping that someday I will be able to talk about my experiences more openly.
Thanks so much for the helpful links you posted about insurance coverage!
(Here from the Creme)
Here from the creme de la creme list. My secret: my hubby doesn't know I started this blog, simply because I want to be able to write freely, cry or laugh freely. I feel that if my family read this blog, I wouldn't be able to share my thoughts so openly. However, I don't mind sharing my blog with the IF world, because I know they understand.
Great post. I blog anonymously for the same reason, but am "out" to all of my close friends and family about IF. I don't talk about it at work, though. I'm thinking that maybe I should start.
(here from creme)
Almost everyone in our lives knows about our infertility, but they are not welcome to my blog (or myhubby's for that matter). Privace is a fragile thing and once you break it it is likely gone for good.
I hope you have told enough people to at least get some support.
Here from creme..this is a great post and brings up some really important questions about IF and sharing our stories for advocacy and yet wanting to keep things private for our sanity. I have been coming out to all my friends and family, I try to keep everyone in the loop and be as open as possible. I thought this was great until we had to tell people that our IUI's did not work. Still not sure how we are going to handle it for the IVF treatment we are about to do. I have 2 friends who know about my blog and my husband.
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