Sunday, April 21, 2013

NIAW

It's National Infertility Awareness Week again. My husband and I, like many other couples, suffer from infertility. 1 in 8 couples do, or 7.3million in the U.S. alone. This week I won't be posting on here about NIAW, but I will be posting on my FB and continuing to try and educate my family and friends about this disease. Despite how long we've been down this road, many still don't get it. There is always this break in communications, or an uninterested ear, maybe a disconnect, I don't know. I do know that I'm going to keep talking though. I may not be talking about our current struggles, but I will be talking about all our struggles- what we as the community face everyday.

There are many issues about infertility that bother me. Like many of you, financially it is a major burden. This isn't the worst of it, but over and over it comes back up and gets in my face. When you're coughing up $500 a month, or $3k for one cycle, it's impossible for it not to get in your face. It's such a gamble, and I am not the gambling type. Yet here I am, throwing $500 down on the table for a 25% chance of winning big. If this year doesn't work, we'll have no choice but save and save, and then turn around and throw a whole months wages down on one cycle. An entire months wages... that isn't so easy to come by. And you know what? Some people have to risk more than that.

Why is it such a burden? Because insurance refuses to cover us. Because there are no government mandates here to protect us. Oh, yeah, my state has limited mandates... for diagnosis. But it's a joke. The moment I was diagnosed with PCOS, they left me hanging. No further diagnostics. And my insurance weaseled their way out of even covering that bill! The bottom line is that our insurance companies believe that our disease isn't worth it for them. That our ability to conceive and desire to have children is not their problem.

In my years trying to become a parent, I was forced to make decisions I didn't want to because of my coverage status. I had to take risks then, and even now, I don't like. I have to take treatment options that aren't as good, aren't as proven, or as successful. I have to take medications that aren't as helpful, or as strong. I have to take breaks in order to save money, and I've had to make the decision to walk away completely before.

Having coverage doesn't guarantee anything, and I get that. Even with coverage, there are co-pays and there are caps/limits. But that's why we need mandated coverage for everyone. Because most of us are getting screwed here. Insurance shouldn't be able to deny us coverage for a disease just because they don't feel like it.

There is so much more involved with infertility than just crappy insurance and financial burdens though. There is the emotional weight, the lead in your heart, the jealousy, the agony, the bitterness- constantly living in survival mode. I survived it once, and I have my son, but my heart still hurts. Not like it did before, but it still aches. I still find my heart catch in my throat, and tears spring up from nowhere at times. I still have a hard time when things happen so easily for others, because you know what? That wasn't me, and it won't ever be me. Yes, I get jealous. I get bitter. And I get sad. Something that was supposed to be so easy and natural was taken from me. It was unexpected, and yeah, it still hurts.

Infertility is cruel disease, and it's almost always unexpected. It's hard to talk about sometimes, and it's often closeted. I wish that we didn't have to do the things we do, but at some point this became the new norm. And while I hate that, this is the hand I was dealt. I can either keep gambling, or hold. I can keep educating and advocating, or remain silent. There is no right or wrong here, I can understand why some choose to stay silent. It is a hard road. But I will say that if we never speak up and out about this, then nothing will change. If we never take a risk, we won't get anywhere. If we don't tell our story, who will?

3 comments:

katherinea12 said...

Thank you for giving voice about the raw deal infertility gets with insurance. How we are so often forced to make do with treatments that aren't as good or forced to give up when we aren't ready. How much this increases the already great pain of infertility.

This resonates so strongly with me, especially about the gambling on each cycle. After my last failed cycle, I called my mother, panicked, sobbing that I had wasted $2000, just thrown it down the toilet - that's enough to pay my rent for four months and more than one of our cars cost. And why...because insurance doesn't think I have real problem here.


Thank you for this post. Your words are such a voice for so many of us here!

Isabel said...

So true! Not only we have to deal with the physical and emotional aspects of infertility, there's the financial aspect too.

All in all we are getting the short end of the stick here, no matter how you look at it. It drives me mad that health in general is a business, simple as that.

Right now we are looking at spending out of pocket $12,000 or even more for IVF. If that doesn't work out, we can forget about trying again for a veeery long time. It sucks, plain and simple.

Thanks for this post!

Persnickety said...

There is another comparison to gambling I have found- after my IVF first cycle I was very reluctant to do another, but after the second all I could think was "these changes will make it work next time". Kind of like the compulsive gambler on the video pokie machine thinking every time that next time would be the one.

I completely understand how people can do 10 + cycles in that mindset, and it is scary