Infertility: The Disease We Need to Start Talking About

I came across this article when I was on the RESOLVE website. I absolutely detest the online "news source" (if you can even call it that) where it is posted, but it was a pretty decent article, so I thought it was worth re-posting. (At least I credited the author.)

Infertility: The Disease We Need to Start Talking About

Silence might be golden in some circumstances, but in the case of infertility it has been downright destructive.

Recently RESOLVE, one of the only organizations dedicated to infertility, made a bold announcement on its website: "People with infertility are being ignored." I always knew that insurance coverage for treatments such as in vitro fertilization (IVF) is scant at best, and that many doctors still don't treat infertility as a major health issue. I've learned that blatant misconceptions persist when it comes to our reproductive health. And it's no secret that the media doesn't cover this subject as often as it should.

However, what I didn't realize is that infertility patients' reluctance to discuss their struggles and advocate for change is directly preventing those affected from getting the support and funding they deserve. As Barbara Collura, executive director of RESOLVE, explains, "Infertility is not being discussed in the general public health realm -- it's not taught in health classes, it's barely touched upon in medical schools, and it's not a priority of any government entity. Yet how can we expect health care providers, educators, our government, and insurance companies to pay attention to infertility when the patients themselves aren't even talking about it?"

Why the silence? People battling infertility are certainly not alone -- a staggering one in eight couples face it -- yet many feel like it is an extremely personal matter not to be shared with anyone but anonymous women and men on message boards. Some say they feel shame for not being able to procreate or for having faulty plumbing, so to speak. Also, in our somewhat still Puritanical society, we've been brought up to believe that sex is a private matter. Discussing it in some circles, even when it pertains to a medical condition, is taboo.

Of course, not everyone feels that way. For instance, while plenty of celebrities would never admit having gone through IVF (even when so many give birth to twins in their 40s), Giuliana Rancic has helped break the mold by publicly sharing her fertility battle via her reality show Giuliana & Bill. "We had signed on to do this show and when we started having trouble getting pregnant, we decided we were going to be honest and reveal what was really going on," says Rancic, who suffered a miscarriage last year after undergoing IVF treatments.

The result of her candidness was both surprising and inspiring. "I started getting up to 100 emails a day from people telling me that I helped them because hearing my story made them feel less alone and ashamed," Rancic explains. "I was shocked by the fact that so many people go through infertility because so few talk about it. And while experiencing it myself has been more difficult than I could have ever imagined, I've found there really is a comfort in numbers."

However, Rancic is still in the minority: It seems that for most men and women facing infertility, it's easier to deal with something so emotionally, physically, and financially draining without having to field questions and opinions from every well-meaning friend, co-worker, or family member. Such comments like "Just go on a vacation, relax, and you'll get pregnant," or "You can always adopt," are far too painful to even acknowledge, so people figure that by remaining silent they'll avoid opening themselves up to such commentary in the first place.

It doesn't help matters that there's no general consensus on how to label infertility. In 2009, the World Health Organization officially defined infertility as a disease. Yet many individuals, organizations, and insurance companies still say that having children is a lifestyle choice and that infertility is not a serious medical issue. Some even liken fertility treatments to cosmetic surgery. But ask the millions of couples desperately trying to get pregnant whether or not having children is a necessity. Why would they subject themselves to months or years of such turmoil if, to them, it weren't essential that they try?

Certainly, there are plenty of valid reasons while this secret exists, but it needs to end. Thirty years ago, breast cancer was where infertility is today -- women just didn't talk about it (a topic I touched upon in a recent blog post). There weren't countless support groups, fundraising walks, and an entire month enveloped in pink. Women battling breast cancer did so in silence and, in turn, many felt isolated and ignored. However, now because there is such an international dialogue about the disease, breast cancer receives multi-million-dollar grants each year in research funding and patients are inundated with an outpouring of support and understanding.

Other cancers, AIDS, and many other illnesses follow the same path from shame to global support and advocacy: Once people start talking about it, the awareness, funding, and answers follow. "The silence is one of the key reasons why the infertility movement is not where it should be," says Collura. "By people speaking out and letting the world know that these are real issues affecting real people, that would impact advocacy, public education, and public policy."

What will it take to bring infertility out of the closet, so to speak? Possibly it would help if more celebrities like Giuliana Rancic came forward and if the media started covering the topic more extensively (as SELFmagazine did with a groundbreaking piece on the subject). Maybe we need thousands of infertility patients and advocates to come to Washington D.C. for their Advocacy Day on May 5th rather than a few hundred like in years past. Or perhaps we just need the domino effect -- once a few people experiencing infertility open up, more will follow suit.

I don't know what the magic ingredients are that will take infertility from an issue no one talks about to a banner "pink ribbon" type of cause. The bottom line is that far too many people are suffering. But by suffering in silence, the stigma persists and the advances we need to overcome infertility will never become a reality. As Collura points out, it starts with those struggling with infertility saying, "We matter."

And when they do, the rest of the world must start listening.

Dina Roth Port, a freelance writer for publications such as Glamour, Parenting, and Prevention, is author of Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. Visit her website at www.dinarothport.com. 

Invoking my Inner Chi

Okay, not really ;-) But I am doing yoga for the first time and absolutely LOVING it! Since I'm now working at a health club and have a free membership, I'd be stupid not to take advantage of all that it has to offer, including the awesome classes, with yoga being one of them.

So a little about my history. I have dealt with eating disorders and exercise addiction in the past. So you may be thinking, "How could exercising a lot be bad?" Well, when you do it for three hours a day, coupled with hardly eating, yeah, then it can be bad. But it's been over 10 years since I've overcome anorexia and the addictive exercise compulsion and I'm finally at a place where I just want to be healthy and feel good. I know that I have to be careful because it's amazing how quickly those feelings from the past can resurface (addictions and disorders are very sneaky that way), but now I know the warning signs and I know how not to abuse it.

So back to yoga. As I get ready for a new fertility journey this year, I was looking for additional ways to deal with the stress and anxiety that inevitably arises from fertility treatments and yoga seems to be it.

There are a few things that I really like about yoga. First, it's incredibly relaxing. The music, coupled with the dim lighting and calm, metered breathing instantly relaxes me. I leave feeling relaxed and refreshed. I've also learned that if I want to do cardio, I need to do so BEFORE my yoga class, otherwise I'll never get on that elliptical machine.

Next, I love that it's an hour of uninterrupted prayer time. Other than when the instructor quietly announces a new pose, I have some awesome time with the Lord. I talk to God, pray for friends and family and just connect with Him in a very intimate way. I can close my eyes (okay, most of the time, if I can balance a pose without toppling over :-) and block out everything around me and it's just me and God.

Third, I know that I'm doing something good and healthy for my body. It's amazing how you can feel parts of your body that you didn't even know were there! So yes, the first few times I was pretty darn sore. But now, I'm getting used to it and I'm able to do more poses without walking like an old woman the next day. And although I'm naturally pretty flexible, with yoga, I've become even more so. And just as a side note ladies: your husbands will like this element of you doing yoga, too! (hint, hint. wink, wink).

And last, yoga gives me some sense of control when everything in my world can feel so out of control, especially when it relates to infertility.

When you are dealing with medically diagnosed infertility, especially "unexplained infertility," you can feel helpless. There's this feeling that if you actually knew what was wrong with you, then you could try to fix it or get the medical help that you need. But when it's "unexplained," it can be incredibly frustrating, because there's no more tests or procedures or medications that you can take (other than fertility drugs and treatments). It just "is what it is" (Bob hates when I say this!), but it's so true. Couple the "unexplained" with "secondary," and it's a whole new level of frustration. I know what my body is capable of. I CAN get pregnant; I've done it twice. So why can't I now? Why is my body failing me? And in reality, what I'm really feeling is that I have failed.

So when I do yoga, I can control my body and poses and breathing and my thoughts, even for an hour. And hopefully, my body will begin to remember just what it's capable of (hey, I can dream, right?) Or when we do resume treatments and I'm relying on doctors and medications to make my body do what it needs to do in order to become pregnant and stay pregnant, at least I'll have some sense of control in a very out of control time.

And to top off this post, I just happened to come across an article from Sunday's New York Times that talks about the benefits of yoga when you're dealing with infertility. Just to be clear, it's not saying that if you do yoga, you'll get pregnant. But it is saying that there are direct benefits of yoga while undergoing treatments and trying to get pregnant when you have infertility. Oh, and it's not saying, "Just relax and you'll get pregnant." Which, by the way, you should NEVER, EVER say to to someone who is struggling with infertility. That is, unless you don't want to make it out of the room alive!

And for your reading pleasure, here's that article: Yoga's Stress Relief: And Aid for Infertility? Enjoy!

Not "If" but "When"

"When you pass through the waters,

I will be with you;

and when you pass through the rivers,

they will not sweep over you.

When you walk through the fire,

you will not be burned;

the flames will not set you ablaze."

Isaiah 43:2 (NIV)

Faith is scary. Stepping out into the unknown, often all alone, can be very difficult, to say the very least. Often times, it feels like you're looking into a dark, black abyss. You have absolutely no idea what lies ahead because all you can see is what is lit directly under you or maybe a little in front you. The hardest part of faith is taking that first step and trusting. Just trusting God that he'll be there when you take that step.

Trust. That's also a tough one. Trusting people is even tougher. Because people will let you down. People will do things or say things that will hurt. Even Believers. If I rely on other people to encourage or build me up, I'll undoubtedly be disappointed. If I rely on the acceptance of other people as a gauge of who I am, I will never be satisfied. God's approval is all that matters.

This verse in Isaiah has been haunting me for weeks now. Every where I turn, I'm hearing this verse, so I'm convinced that God really needs to me listen, to get it. This verse screams faith to me. It says, "Hey, guess what? You are going to struggle and WHEN you do, I'll be there." Notice it doesn't say "if" but "when." I alone. I, the Lord your God, will be there. You are going to pass through waters, but I won't let them swallow you. You are going to walk through fire, but I won't let it consume you. I will allow you to lose a son, but I have not forsaken you. You will walk through the devastation of infertility, but it will not destroy you.

Now I realize that more than likely, this verse is referring to when the Isrealites walked through the open waters of the Red Sea and when Shadrach, Meshach, and Abednego stepped into that firey furnace, but even more, it refers to faith.

The very title of my blog refers to stepping out in faith. So over the next several months, I'll be doing just that. Bob and I will be embarking on a new path in our fertility journey. Unfortunately, I'll be keeping my hand a little closer to my chest this time. I will not be posting a play-by-play like I have in the past. Perhaps I will share more after we're done, but not right now. I hope that people will understand. It's just that I think I've learned my lesson with my raw honesty; it makes people too uncomfortable. Who knows, maybe I'll change my mind and say, "screw it!" But for right now, my lips are sealed. I will ask for prayers, though. Prayers for wisdom and guidance as we take a huge step of faith. I know that God has already begun to write an amazing part of our story; I can't wait to see how it turns out.

Worth reposting

I posted this letter over a year ago and my feelings still ring true:

I want to share my feelings about infertility with you, because I want you to understand my struggle. I know that understanding infertility is difficult; there are times when it seems even I don’t understand.

This struggle has provoked intense and unfamiliar feelings in me and I fear that my reactions to these feelings might be misunderstood. I hope my ability to cope and your ability to understand will improve as I share my feelings with you. I want you to understand.

You may describe me this way: obsessed, moody, depressed, envious, obnoxious, aggressive, antagonistic, bitter, and cynical. These aren't very admirable traits; no wonder your  understanding of my infertility is difficult. I prefer to describe me this way: confused, rushed and impatient, afraid, isolated and alone, guilty and ashamed, angry, sad and hopeless, and unsettled.

My Infertility makes me feel confused. I feel confused as to why this is happening. I feel confused when I get diagnoses such as unexplained secondary infertility. A title I do not want. Surely if I try harder, try longer, try better and smarter, I will have another baby.

My infertility makes me feel rushed and impatient. I learned of my unexplained secondary infertility after we’d suffered the loss of our second son and began trying to become pregnant again. I not only grieve the loss of a child, but now I grieve the loss of my own fertility. And I wait. I wait for medical appointments, wait for tests, wait for treatments, wait for other treatments, wait for my period not to come, wait for pregnancy. At best, I have only twelve opportunities each year. How old will I be when I finish having my family?

My infertility makes me feel afraid. Infertility is full of unknowns and I’m frightened because I need some definite answers. How long will this last? What humiliation must I endure? What pain must I suffer? Why do drugs I take to help me, make me feel worse? Why can’t my body do the things that my mind wants it to do? Why do I hurt so much? I’m afraid of my feelings. I’m afraid of my undependable body.

My infertility makes me feel isolated and alone. Reminders of babies are everywhere. I must be the only one enduring this invisible curse. Sometimes I have to stay away from others, because everything makes me hurt. No one knows how horrible my pain is. I feel so alone and I wonder if I’ll survive this.

My infertility makes me feel guilty and ashamed. Frequently I forget that infertility is a medical problem and should be treated as one. Infertility destroys my self-esteem and I feel like a failure. Why am I being punished? What did I do to deserve this? Am I not worthy? Am I not a good enough mom? It is easy to lose self-confidence and feel ashamed.

My infertility makes me feel angry. Everything makes me angry, and I know much of my anger is misdirected. I’m angry with my body because it has betrayed me. I want and need an advocate to help me. I’m angry with my medical caregivers because it seems that they control my future. They humiliate me, inflict pain on me, pry into my privacy, patronize me, and sometimes forget who I am. I’m angry at my expenses; infertility treatment is extremely expensive. I’m angry that insurance companies do not value my basic human right to have a family, even if it means that I need medical intervention to do so. I’m angry that they would rather provide coverage to terminate pregnancies than to help a family’s dream of being parents. Finally, I’m angry with everyone else. Everyone has opinions about my inability to become and to stay pregnant. Everyone has easy solutions. Everyone seems to know too little and say too much. 

My Infertility makes me feel sad and hopeless. Infertility feels like I’ve lost my future, and no one knows of my sadness. I feel hopeless; infertility robs me of my energy. I’ve never cried so much or so easily. I’m sad that my infertility places my marriage under so much strain. I’m sad that my infertility requires me to be so self-centered. I’m sad that I've ignored many friendships because this struggle hurts so much and demands so much energy. Babies, pregnant women, playgrounds, baby showers, birth stories, kids’ movies, birthday parties and much more, surround me. I hate that I must miss out on things in my friends lives for my own self-preservation. Sometimes I feel so sad and hopeless. 

My infertility makes me feel unsettled. My life is on hold. Years spent doing treatments has put so much on hold. The more I struggle with my infertility, the less control I have. This struggle has no timetable; the treatments have no guarantees. The only sure things are that I need to be near my partner at fertile times and near my doctor at treatment times. Should I pursue adoption? Should I take expensive drugs? Should I pursue more specialized and costly medical intervention? It feels unsettling to have no clear, easy answers or guarantees. Occasionally I feel my panic subside. I’m learning some helpful ways to cope; I’m now convinced I’m not crazy, and I believe I’ll survive. I’m learning to listen to my body and be assertive, not aggressive, about my needs. I’m realizing that good medical care and good emotional care are not necessarily found in the same place. 

I’m trying to be more than an infertile person.

Follow-up to yesterday's post...

Here's an article from October from The Washington Post : Infertile Couples cope with prolific Facebook friends

And although there will still be those who view me as the bitter, complaining infertile (which are also those who have NEVER dealt with infertility), there are those can relate and are able to show empathy. And for those who HAVE dealt with infertility, well, there's just no excuse. IMO, you should know better. I'm just sayin'...