July 22, 2010

A Belly Full of Fire: A 5-Part Series on Infertilty Advocacy

This week into next, I'm going to get up on my soapbox and talk about something that has really shaped and defined my life in the last few months: infertility advocacy. I invite you to read along and follow this five-part series as it posts each weekday between today and next Wednesday. (And yes, it's deliberately timed with this month's ICLW.) So take a seat and get comfy - I'm not one for brevity when it comes to topics about which I am passionate. Prepare to do a little digging in your soul to find out what moves you, what drives you - what fuels the fire in your belly.

"We are being ignored."
-Barbara Collura, Executive Director of RESOLVE

"If you're not going to fight for yourselves, how is anyone else going to fight for you?" -Debbie Wasserman Schultz (D–Fla.)

A Belly Full of Fire, Part One: Advocate or Abdicate

If you haven't read SELF Magazine's article on infertility in their August issue, do me a favor: click on this link, open it in a new tab or window and read in its entirety after you read this post. When I first read it earlier this week, I felt like I had been punched right in the stomach, my eyes bulging, my face red and contorting as all the air escaped from my lungs. Had I been doing all of this advocacy work for nothing?

When I tell people that no, I don't do infertility advocacy for a living, they are shocked. This blog, RESOLVE of New England, my video- I do it all in my free time. I work for a small private college in the housing department. My days are spent dealing with roommate conflicts, programming forms from RAs, and developing a comprehensive new First Year Experience program for our incoming freshmen this fall. I'm in this line of work because that's where my non-committal communications degree lead me. Between working 35 hours a week and devoting every waking hour to my advocacy efforts, I have be blunt with y'all: it's exhausting. I have been running myself ragged for the last couple of months, but I do it because advocacy is vital. Advocacy feeds my soul.

Advocacy is necessary because of the veil of shame and silence that surrounds the 7.3 million people in this country who cope with infertility every day. Jennifer Wolff Perrine raises this same question in her article for SELF: "It’s a strange dichotomy: how can a health issue that gets so much ink be shrouded in silence?"

Infertility is a sexy media topic right now, one that has been taking a substantial amount of heat recently. Take for example yesterday's article in Newsweek: Should IVF Be Affordable for All? After the Nadya Suleman fiasco, celebrity gossip surrounding stars like Celine Dion, damaging trite portrayals in Hollywood like Jennifer Lopez's The Back-up Plan and the public's critical gaze on affordable healthcare in a gloomy economy, this Newsweek article just adds more fuel to the fire of opposition on infertility treatment coverage:
Whether infertility should be classified as a disease or a socially constructed need is a dilemma at the center of this debate... A complicating factor, according to St. Luke’s (Dr. Sherman) Silber, is that up to 80 percent of infertility cases are caused simply by increasing maternal age. “It’s hard to call infertility a disease. It’s normal aging,” he says.
Dr. Silber, I hate to argue with an MD, but infertility IS a disease. Just ask the World Health Organization: "This recognition from WHO of infertility as a disease represents a significant milestone for the condition." (Source.) With distorted media images of wanton career-driven thirtysomethings and desperate perimenopausal women salivating to have their own baby bump, Silber's statement is not only inaccurate, but irresponsible as a cited expert in the field. Thank you Dr. Silber, for setting back 25+ years of hard work in the infertility advocacy movement.

With all of the vitriol being directed by the media at infertility- its patients, its treatment, and its very validity as recognized medical disease- our advocacy efforts are needed now more than ever.

And it requires infertility patients to take the biggest, most difficult step of their journey. Infertility patients need to start speaking out publicly.

Look, I'll tell you right now: it's not easy to come out of the infertility closet. I was diagnosed on March 18, 2009. The first phone call was to my husband. That evening, we called both our of parents and I called my sister. Two weeks later I sent out an email to two dozen of our closest friends explaining the situation and shared the link to this blog. If infertilty was the new game, I wanted it to be played by my rules. Not once have my friends judged me, asked "so when are you having kids" or told us to relax. We receive a bevy of advice- some helpful, some not- but always extremely well-intentioned and expressed with sensitivity and compassion.

I know Larry and I are the extreme example in this case. I know there are plenty of couples who do not have this same level of support. But you'll never know if you don't try. To this day, I don't regret ever telling friends that I was infertile.

Not only did we find out just who indeed were the folks that cared about us, but just how much they cared. When I uploaded my video and finally blasted it out across the internet, people I never thought would bat an eyelash came out of the woodwork to tell me their stories, to thank me for being so brave to put my name and face out there with this label. I was floored. People I had worked with, gone to high school with, a friend of friend... they picked up on that energy and finally felt comfortable enough to share their stories with me.

I asked in my video: "What if I stopped hiding behind my fear? What if my story can help millions?"

If my story- this one little random woman from Boston- could touch hundreds and hundreds of people (seriously: there are hundreds of emails in my inbox and I'm still getting emails and comments from people who have come across my video)...

Could you imagine if we had 100 people willing to publicly speak out about their experience with infertility? What if we had 1,000 people running a 5K charity race? 10,000 people marching on Washington?

Grassroots advocacy is there for our taking right in front of us and we as a patient community cannot get out from behind our own self-imposed sense of shame and silence.

Oh yeah, I totally just said that.

But so does the SELF Magazine article. Wolff Perrine writes:
Women's silence hurts more than themselves. It ensures that infertility remains an anonymous epidemic, with less funding and research than other common medical problems receive.
She cites Lindsay Beck, founder of Fertile Hope:
Because no one wants to discuss infertility, "nothing gets done about it," says Lindsay Beck, ..."Infertility is where breast cancer was in the 1970s—completely in the closet... For the average fertility patient, there is no united front."
And as a patient community, we're shooting ourselves in the foot when even those who successfully resolve their infertility choose not to acknowledge their past pain:
However someone resolves her infertility, the tendency is to want to put her struggles behind her. "People want to forget," says Collura of RESOLVE... "We do our damnedest to instill in our members that they need to take a stand and help the cause or the same thing is going to happen to the women who come after them."
Infertile couples who have found resolution owe it to their children to speak out, to own their disease and walk with it even after they have beaten it.

So what's an infertile to do?

Take the pledge. Start using your real name. Share your blogs with your family and friends. Talk to the media. Call your legislators. Volunteer with your local chapter of RESOLVE. Write grant proposals. Stop caring about what other people think and instead focus on what other people can do to help.

Ladies and gentlemen: I give you "advocacy in a nutshell." No seriously - that's really all that it is. You don't have to have your advanced degree in public health. Patient activism is pretty simple: just tell everyone your story and why it matters.

If all of this seems like too much, then just start by going to RESOLVE's website and take the pledge to do something. RESOLVE says it best: "It's time to stop, look, listen and act. It's time to pay attention." Then get your support network of friends and families to take the pledge. Don't be embarrassed - just send those emails and I'm sure you'll be surprised to see who's willing to stand by your side in solidarity.

Our stories are long overdue to be heard by the public. But we have to tell our stories out loud if they're ever going to be heard.

The bubble of silence, shame, and ignorance surrounding infertility is ready to burst.

Either we publicly advocate for ourselves or we abdicate the right to demand change.

. . . . .

If this post has moved you, please share it online: tweet it, Facebook it, blog about it... This is how a grassroots movement begins.

Today I wrote about why advocacy matters on the community level. Tomorrow I'll talk about why advocacy matters on a more personal, healing level for infertility patients. Stay tuned for A Belly Full of Fire, Part Two: The Wounded Healer.

Photo by Natalie Lucier via Flickr.


Kakunaa said...

Keiko, much like you, my husband and I have been out about our struggle since the day we got our diagnosis...with mixed results. But I don't regret my decision, ever. By being out in all of my life I have come across so maany other women...and men!...who feel they can share their story with me and it feels GREAT! It doesn't feel like enough though, and I am not sure where to go next, though I am about to take my job to task about removing one of our IF benefits. And I am working on a post about advocacy as well...the SELF article hit me hard. As always...a great read :) thank you for being so out there.

Jo said...

Wow, what an inspiring post! I've admired you for a while, but now I am just in awe.

My blog is anonymous, not because of my infertility, but because of my marital struggles and my respect for my husband's privacy. In IRL, I have been open with my family throughout our struggle. I am slowly becoming more open with others, and just in the past few weeks (after our 2nd loss), I "came out" on FB. I posted the Self article (which didn't get much response), but hopefully was eye-opening for some. I have received a few emails from people who I had no idea were struggling with infertility and who reached out to me after I posted about our IVF's and our losses.

I guess what I'm saying is that you are right on the money, and I am trying hard to be more open and more vocal about IF. My biggest fear is turning people off, because I talk about it too much. Unlike cancer, talking about IF still has that stigma and you become "baby-obsessed" instead of a victim to the disease. It's a fine line to balance, between educating others and being labeled insane. LOL!

Anyway, I'm game. For any of it, all of it. I will write letters, walk in marches, whatever it takes. Sign me up.


Anonymous said...

You're 100% right. I'm open about it to my friends but, like Jo, my blog and twitter are anonymous because (1) my BF is a very private person and (2) I sometimes use my blog to vent about people I know IRL so I don't want them reading it. It's not anonymous because I'm ashamed of or am hiding my infertility.
But now I'm confronted with a conundrum. How can I be more of an advocate, using my real name, but still maintain my anonymous blog?

Nichole said...

Keiko - THANK YOU! I started out this IF battle has a big advocate, I wrote to congressmen, senators, talk show hosts etc. I sent emails to friends and family, I openly blasted about it on my Myspace page (that was before I had fb) but over the last 5 1/2 years, I just lost the fire.

You can be assured that I will be back daily to take fuel from you and put it back on the smoldering embers. I will join this fight and will proudly tell everyone that I am infertile, and I am not ashamed. (pissed about it...but not ashamed LOL)

Keiko said...

Thank you ladies, for all of your wonderful comments. I hope the commitment you've pledged online will carry into your "offscreen" lives :)

I'd also like to say: talk to your husbands and your boyfriends. You might be pleasantly surprised. Larry has a pretty established online presence because of his job. But if you google his full name... my blog doesn't even come up. You have to google his name + some other qualifying thing, like infertility. If you're selective about just using your first names only on the blog and still sharing it with fam/friends, you can pretty much avoid the whole google lookup issue.

@Kakunaa: It does feel great. Stay tuned for the rest of the series to get an idea of what other stuff you can do :)

@Jo: IF does have a stigma. So did breast cancer. And being gay. FFS, being black in the 1950s. Do some of these things still have stigma? Yes - but we live in an age where we can openly dialogue about them now. Don't worry about turning people off... the ppl that truly care about you won't mind.

@foxinthehenhouse: Fair enough - I shouldn't be so quick to forget my "sweet jesus so and so is driving me nuts" days of LiveJournal. There is indeed value in anonymity. But you can always write a second blog and be choice with your words. Leave the venting to one blog, the advocacy to another, and never link the two.

@Nichole: I'm so happy to hear this has reignited your fire. And I'm angry too- IF is not fair, it's not fun, and I'm tired of being ignored by our legislators :)

justine said...

Keiko, you are simply amazing. And some day I'm going to go to Boston and have lunch with you (especially since I work in higher ed, too, and would love to hear your stories about THAT).

I think pregnancy loss is something we also can't talk about ... connected to, but also different from, IF. For example, why isn't miscarriage covered under bereavement leave? Why are ultrasounds after miscarriage not covered by many insurance companies, because the woman is no longer pregnant? Those of us who have experienced loss are a little like pariahs ... as if by talking about it, we might curse the happy healthy pregnancy bunch.

It is hard to break our silences. I use my real name in my blog, but I have told very few "real life" friends about its existence. Thanks for reminding me that breaking silence happens one person at a time, one conversation at a time. And thank you for continuing to inspire us all to "come out of the closet"!

shell_mi said...

Bravo! I am 28 years old with endometriosis. It took me my entire life + 2 years of infertility to reach that diagnosis, my symptoms brushed off as IBS and painful periods. Now I Host a RESOLVE PLSG in Connecticut and am always pushing the group with my own stories of small advocacy victories. Weather it's my own family (who 4 years later still can't seem to "get it"); a friend; a co-worker; or a stranger, the more you open up about what infertility is REALLY about the more you are doing for the cause. It doesn't have to be embarrassing unless you are embarrassed by it.

Thanks again for the great read!

PS I am starting an estrogen-free diet and am thinking about blogging about my next adventure. Any tips?

Brandy said...

I have slowly been telling people about our journey and when they say stupid things, I gently tell them what they can do instead to help us. I have been very frustrated with the lack of understanding, and now feel that it is my responisbility to educate people. Thank you for this!


Hurdles of Life said...

I admit I hid things about our IF treatments when we were receiving them. I hid because I didn't want anyone else to hurt the way I did. I don't hide anymore... But I also don't stand up and shout (blog) to everyone that we underwent IF treatments and all failed. I do shout (blog) that we are purusing adoption through foster care.

I know that its hard to come out and share your story, its hard to be in the frontline.. when the majority of your peers have the same "normal" reaction to your tales. At some point you have to stop being afraid of what someone will say, and start standing up for yourself and your fellow IF'ers.

Thank you for being braver than I.

Christina said...

ahhh! I love love love hearing about other women being so open about their if. Like you though, I have a very supportive family that makes it easier to be open. Just fyi- my blogspot is curseofthechewedbuddah.blogspot.com annnnd finally TLC has a webseries called "A Conception Story" which follows 6 womens journey to become mothers. I am one of those women (Christina) and I just hope that by putting my struggles out there it will open the eyes of many to this "swept under the rug" topic. (btw-you can view it if you look under "videos" on their main site!

Catrisha T said...

Coming out of the infertile closet is hard. Advocating it can be just as difficult, but putting that first step forward to let everyone know and start defining yourself not letting infertility define you is amazing. I'm glad I found your blog months back. You're a GREAT advocate and I'm glad that you can push us in the right direction to advocate for ourselves. TFS!

ICLW #16

jrs said...

great post. thanks for informing me of that article. it hit home on many levels. thanks for inspiring me to take a bigger stand. I think each person is at a different place in this, and I think I am ready to be more of an advocate now.

i will definitely blog about your post soon.

Dr. Edward Ramirez, MD, FACOG said...

I have read both the Newsweek article (yesterday) and the SELF article (last week) & like you said, it seems that infertility is the new buzz word in the media. On the plus side, like with breast cancer, increased publicity might help IF become recognized as a legitimate illness. Unfortunately, some of the buzz words that come out are hopelessly confusing, and sometimes downright wrong. After treating infertility for over 16 years, I cannot imagine NOT calling the various aspects & contributers of IF a disease. If there are methods to cure or alleviate whatever causes infertility then we need to find them! Like with mammograms, women should have the right to laboratory tests at an early age (30 yrs) for FSH so that they know if they are at risk. One other alternative in the near future is fertility preservation for all women...this could be the answer for many future sufferers. Will these be covered? As far as insurance is concerned, the fact that my patients have to jump through so many hoops just to get minimal coverage infuriates me. In California we do not have many carriers for IF so we try our best to get as much covered for our patients as possible. As someone who went through infertility with my wife well over 12 years ago, after years of TTC, I have high hopes that the message gets louder & louder. There certainly is more advocacy now then there was then. We will continue to advocate for our patients, no matter what. EJR, MD

Stephanie said...

You go girl! I practically stood up and saluted while reading this post. Keiko, I am a woman who went through infertility without any success. I had to learn to live without children (adoption didn't feel like something we were called to) and it was painful and at times still is.
I am putting together an ebook called, "The Forgotten Patient" coming out next month. It's a short collection of seven stories from women like me, who went through treatment but ultimately never parented for a variety of reasons.
None of us put off having children until we were "older." The notion that infertility is an age related issue is outrageous. The first time I walked into a RE office he said, "But you're only 28 yrs old." HELLLOO...I didn't want to come in here at 40 and have you say, "Why didn't you come in when you were 28?"
Bless your efforts. If I can be of help, just holler. I am a therapist who specializes in supporting couples/women dealing with infertility.

Elana said...

Bravo! I've always been open about my infertility, because I wanted women to be able to open up to me and for me to help give them strength--while gaining some back myself. Something needs to be done, and I'd be happy to walk on Washington with my twins in hand. Without MA's mandate, there's no way I would've been able to afford IVF.

And for those that say that infertility is a condition that has to do with aging, then maybe we should stop covering Alzheimers and Parkinsons. You know, it happens to people when they age so it shouldn't count as a disease. Geez, some people are so stupid.

Waiting Lisa said...

I've never kept my infertility a secret. When I was doing injections, I even showed everyone I worked with the giant welts I had on me. I think my 80 yr old co-worker would have rathered I didn't share, haha.

Recently I have found myself taking it to a whole new level. Friends and family are helping Adam and I have a garage sale/bake sale/raffle to raise money for our adoption. The word has spread and people are contacting us and offering to help...it's all been amazing. But yesterday I found myself on the phone with someone from the marriot (they were offering to donate something to be raffled off and were asking me questions) and I was telling her about how I have no uterus and that was when it hit me. I am out and out in a big way.

At our family reunion last weekend, my mom told everyone about my blog. It really caught me off gaurd. She said she couldn't help it- she was proud of me.

Ashlee G. said...

Man, If my infertility is caused by my ageing then I guess I'm screwed. I never thought being 23 would mean I'm too old to get pregnant.

Infertility is a disease. Thanks for advocating or us!

ICLW #50

Prairie Anonymous said...

I read your post earlier today & have been thinking about it ever since.

I wanted to comment that I think a big part of the silence, is this: it's not until the point of definitive infertility, diagnosis and treatment options exhausted, that most people would call themselves infertile.

Even on Resolve's Inspire on-line communities, the first topic category is for "Newly diagnosed". What about those of us still in limbo, still trying to figure out why we can't easily get or stay pregnant? Those without even the vague diagnosis of "unexplained infertility". No diagnosis.

I've started thinking of myself as someone with fertility challenges, as someone with infertility issues, but I'm not willing to take the big label of Infertile. Not yet. For me it's still a TTC journey.

Great post. You've got me thinking and perhaps posting my complete thoughts on my still secret blog.

TwoDogMama said...

I love your article Keiko and you are a wonderful advocate. I will fully admit we are totally open about infertility, but for us I don't really consider it a "disease." I consider it bad luck/poor doctor decisions/that left me with infected fallopian tubes that had to be removed. Now my bad egg diagnosis? Well, no one has really labeled that although through my own research I suspect it is premature ovarian failure. Obviously, I would consider that a disease, but the main cause of my problems, nothing but shitty luck. Everyone in real life knows about our infertility struggles, then the adoption diaster that is ongoing. I post my blog to Facebook everytime I write it and thanks to word of much so many people read in real life that I had no idea about. However, my name is not on the blog and I am somewhat private about it because of the adoption issues. Trust me when you can google your prospective birthparents and easily find out lots of information on them-then you start to wonder if they are doing the same on you. Luckily, I have a very common last name so I cannot be found by a simple Google search and neither can my husband. Maybe one day when we are over the adoption hurdles we will become public with our names, but then I do wonder about nut jobs out there. I will spend the rest of my life talking up our issues with anyone and everyone that will listen and continue to tell people to get second opinions, check your insurance, do this and do that as much as I can. I am also planning on checking into starting a Resolve group in my area - I live in a major city and we have no group? WTF? To me that is just nuts. Thanks for encouraging and educating all of us.a

Anonymous said...

This post gave me chills. Like you, I broke the news to our family just days after our diagnosis. But coming out to the rest of the world took me a little bit longer. This year, I made a conscious effort to stand up and shout to the world, "I'm infertile and I have a story to tell." Because I do. We all do. We are the face of infertility and we all hold the key to advocacy.

Thank you, Keiko, for being such a strong voice in this community.

Pamela said...

Thanks for this post. It took me several years and quite a bit of soul searching to accept my diagnosis and step out of the closet, but for those who know me, it's no surprise that when I did I declared it to the world in a big way. I've been curious to know why it took me so long and why others are so reluctant ever since. Here's something I wrote about it on Open Salon: