I came across this posting on Resolve.org and just had to share it. I've found such good support and lots of information by being involved in these message boards and feel as though I've known some of these ladies for a while. Meredith is amazing and has gone through so much towards trying to bring home a baby. Sadly, her journey continues and she's searching for answers. But I can't help but feel grateful that even though my journey is far from over, I still feel hope that the treatments we are about to embark on could work for us. Anyway, this is a post she put on her FB last year and it may as well have been me saying it. 95% of what she's said is words from my own story.
"It’s National Infertility Awareness Week! Let’s celebrate by spreading some awareness. Since I don’t have an actual soapbox, I’ll use Facebook. 1 in 8 couples in the US experience infertility. You know at least one of these couples (<DH> and me), probably more. Our experience has been heartbreaking; treatments have been invasive, painful, and expensive. The hardest part is that nothing has worked and we struggle with the reality that treatments might never work.
During this journey I've encountered some amazing support, for which I am touched and deeply grateful. I have also encountered smart, caring people with serious misunderstandings about infertility and our treatment options. In the interest of raising awareness, I've put together “8 things I wish everyone understood about Infertility.” If you've said something a little foolish to me, please don't take this as a complain. My goal here is to acknowledge that misconceptions exist and to improve the dialogue about infertility.
As a "note" (linked to in the status):
1. Infertility is a medical condition. Reproduction is a biological function. When your body can’t reproduce it is a medical problem that deserves to be treated as such.
2. Our infertility is a physical problem, not a mental one. No amount of relaxing, vacationing, or thinking positively will change the biological problem we’ve encountered. Several people have suggested to me that relaxing might solve our problem. Please believe me when I tell you that there is nothing I can do in my head to solve our problem (same for <DH>). Our doctors suggest in-vitro fertilization (IVF) not vacations or de-stressing.
3. Infertility is exhausting. It is mentally exhausting. I have been “not pregnant” 30 times. Think about trying for something (that you really care about) 30 times. How would you feel on the 31st try? … I think the fact that we can summon the hope required to try again at this point is sort of amazing. Infertility is also physically exhausting. Just since January, I have lost track of the number of times we’ve been to the clinic, not to mention the number of blood draws, transvaginal ultrasounds, injections, medications, and phone conversations with my nurse. My body has been through a lot in the last couple years.
4. Our infertility isn’t anyone’s fault. If you want to know more about our diagnosis and what’s preventing us from conceiving you can ask me; please don’t ask, “Whose fault is it?” Neither one of us did anything wrong and our problem cannot be fixed with lifestyle changes.
5. Infertility can be caused by many different issues. 30% of infertility is caused by a male issue, 30% is caused by a female issue, 20% is unexplained, and the rest is some combination of factors. Within both the male and female categories, there are several possible things that can go wrong. With so many different causes, not every infertility treatment is appropriate for everyone. Please do not assume that we should try whatever worked for your neighbor’s sister.
6. IVF does not always work (and it sucks). IVF is an end-of-the-line, invasive, expensive medical procedure that works about half the time under the best circumstances. There are many couples with much lower odds and many who never have success. I hope it will work for us, but so far it hasn’t. When I tell you, “We’re about to start another IVF cycle.” I appreciate your excitement, but I wish you understood that what I just said was, “Having a baby is going to be very difficult. We’re about to try again with about 6 weeks of treatments. It might not work and it will cost $15,000. Our bathroom counter will be covered in materials for mixing and injecting hormones. I’ll go in for several early-morning transvaginal ultrasounds. I’ll also get about 15 blood draws, recover from a painful egg retrieval surgery, have an embryo transferred back into me, and then at the end I’ll “rest” for ten days while I try not to obsess about what is or is not happening in my uterus. I will be physically and emotionally delicate during and after treatment. <DH> will be worried and will be busy attending appointments, taking care of me, and generally trying to hold it all together. I am incredibly anxious that this cycle will end like all the rest, with disappointment and sadness.” That is what “We’re doing another cycle of IVF.” actually means to me.
7. Infertility treatments can be very expensive. Very expensive like we could have sent our non-existent child to UW for an undergraduate education using the money we spent trying to have a child in the past 12 months. For example, $15,000 for a fresh IVF cycle (including $2500 for meds and $4000 for PGS testing) and $4000 for a frozen embryo transfer cycle. We have good insurance and we reached our infertility cap 4 months into the diagnosis and treatment process. Many people with medical insurance in the US have zero coverage for infertility. Ironically, these high costs encourage patients to make riskier decision which result in a high rate of multiples (twins, etc.), which are ultimately more expensive for insurers and riskier for everyone. In places where coverage is mandatory it pays off in terms of total healthcare costs. I also think it’s wrong to discriminate against this medical condition, but that’s a long discussion... suffice it to say that costs can be prohibitive and I wish there was a wider understanding of exactly what I mean when I say “expensive.”
8. For me, infertility is a Really Big Deal. I have thought about this every day for at least 18 months, sometimes every hour. It has affected my outlook on life, my marriage, really everything. I am surprised by how deeply this experience has shaken me, so I can see why others would have trouble understanding. I will try to explain… I appear to have a biological urge to procreate. When I see a tiny baby I’m pretty sure my uterus actually does a little happy dance. And then I want to cry. Infertility is so frustrating and humbling. This is a problem that I can’t fix by working harder or just finding a way to be better. We can do everything “right,” I can take my medications perfectly and read every relevant book and medical article out there, and still have cycle after cycle fail. It feels wickedly unfair. Cycle failures feel like a loss. It is the loss of a baby who only existed in my head. The loss of being able to decide when we have kids (we started trying when I was 28, I’m 31 now). The loss of being able to choose how many kids we have. The loss of the joy and excitement that I used to associate with deciding to have a baby. Infertility makes me feel powerless and sad. It’s a constant struggle to try to keep those emotions from crowding out the goodness and the joy in my life. I believe that we’ll find some path to happiness, but right now the path we’re on is scary, twisted, and just plain cruel.
Thank you for reading all this. I hope it furthers the conversation and awareness about infertility. If you have questions please ask. Although I complained about some of the stupid advice I’ve gotten, I really do think that the dialogue is helpful. I’ll assume that your questions come from an honest, caring place and I’ll answer accordingly. Just to get this out of the way, though… elevating your hips after sex doesn’t make a difference. ;-)"
-Meredith
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