Monday, July 7, 2008

A Disease of One's Own

Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. From Greek ἴδιος, idios (one's own) + παθος, pathos (suffering), it means approximately "a disease of its own kind."
A simple word can be quite powerful. All that I needed was a letter from my RE stating my fertility history so my surrogacy agency could have it on record. The agency prefers to have the RE state that he has advised me to pursue surrogacy but since my case is so gray they told me just a fertility history would suffice. So I had told my RE that I just need my fertility history stated in a letter to give to the surrogacy agency. When I received my RE's letter in the mail I expected to see just the review of my three tragic IVFs on paper, typed out before me as another confirmation of my story. But at the end of his recap, my RE stated, "Due to idiopathic uterine defects, it appears that [my name] will not be able to carry a pregnancy to term."

Whoah! At first I felt sort of stunned by this. All I could look at were the words "will not be able to carry." Was he just saying this so the surrogacy agency would work with me? Did he finally have a diagnosis for me and why had I not heard it before? Why was I so hurt by the wording? Why did I even care if I want to do surrogacy anyway? Clearly I was still holding on to some hope that I could carry a pregnancy. All the REs I talked to never made it so permanent by declaring I cannot carry. The uncertainty of my case made all of them assume I still had a chance verses assuming I no longer had a chance. I guess I wanted to feel like I wasn't forced to choose surrogacy, but I was making a choice to spare my body potential pain. It wasn't an issue of "can't" but "won't." 

But then I turned to the word idiopathic. What the hell did that mean? And then I realized how little it really means. It essentially describes my entire experience with baby making. It's been my "own suffering" due to unknown cause. I have my very own special disease. If I were Virgina Woolf, my book would be called "A Disease of One's Own." All this to say that it's the medical world's total cop out term. So unscientific. So obscure. So unanswerable. So lacking cause. It points to that space where all the brains, teaching, higher education, and fancy degrees are meaningless. It's a diagnosis that says nothing. I read online that in the book The Human Body by Isaac Asimov, he comments that the term "idiopathic" is a "A high-flown term to conceal ignorance." I also read that in the television show House, the main character says the word "comes from the Latin, meaning 'we're idiots, because we don't know what's causing it.'"

So yes, due to my idiopathic bad luck, my idiopathic losses, my idiopathic uterus, my idiopathic fallopian tubes, my idiopathic life, I've moved on to surrogacy -- but for me, not for the diagnosis. It's the big unknown whether I could ever carry myself but I am reminded that we are beyond that question now. I realized I still hold out hope that I could carry someday but right now it's just not feeling like the right move. But wouldn't it be great if this word could actually be of some use to me? Could it be loosely thrown around explaining myself to stupid fertile people? For instance:

"Oh, you asked when will we have kids? Due to idiopathic uterine defects we are a little delayed on that front."

"Oh, you want me to come to your baby shower? Due to my idiopathic uterine defects my RSVP is NO."

"Oh, you are pregnant again? Well, I have idiopathic uterine defects so would you mind fucking off?"


luna said...

sign me up, tabi. god knows I've paid the tuition.

first it's nice to hear from you. second I love the t-shirt and your responses at the end. third that sucks to see that in black and white without having anything definitively explained to you...

since all my "known" issues have supposedly been "corrected," I guess my failure to conceive again is idiot-pathic too.

Just Me. said...

Well said to : "Oh, you are pregnant again? Well, I have idiopathic uterine defects so would you mind fucking off?"

I have idiopathic issues too.

Love the t-shirt! awesome!

Duck said...

Hearing those words is sooo hard. Just out there hanging in the universe.
When my RE said that there is no way I could ever get pregnant, it just seemed so final, so complete, so totally life changing.
It has helped us to hear it, it helped for our hope to be killed, it's the only way we can move onto someone else's uterus?...
Hope the search is quick!

Not on Fire said...

I loved this post! Sad and funny together, just like life. Thanks.

Elizabeth said...

This is a great post. It is stunning when you hear or see those words and realize that they are about you.

Ms Heathen said...

There is something so difficult about seeing these things set down in black and white.

But I love the fact that you were able to find a way of turning this medical diagnosis to your own end. I'm sure that the mere mention of 'idiopathic uterine defects' will be enough to deter even the most persistent of fertile folk!

Shinejil said...

I think you should have my application, too, as much as I keep hoping for a rejection letter for that institution of higher (?) learning.

You need to sell that t-shirt. I know I'd proudly buy and wear one!

alicia said...

I watched that house episode too. you should refer your doctor to it.
I am sorry that letter was not what you expected and kinda took the wind out of your sails, but I think its great that you are continuing moving forward! I LOVED the responses at the end, I think I will have to try out that last one!

Emily (Apron Strings) said...

Can I get one of those tee's? I think all of us with idiopathic uterine defects should all have one.

And, from my own work-experience, I think there are a lot of ideopathic doctors out there ... :-P

Rita said...

labelled "barren"

JellyBelly said...

where do i send my application?????

btw, if you ever market the t-shirt, i'm going to buy one for every day of the week!

the Babychaser: said...

Your suggestions at the end made me laugh. Then I realized that it probably would work, too. Kind of disturbing.

I think it's amazing how, years into this kind of heartache, we can still feel hurt by those words. I mean, at this point, why are our identities still wrapped up in whether we can bear a child? It's frustrating.

Amy said...

I love how you write. The little twist of humor at the end is exactly what I needed today.

dana said...

Great post. Sad and funny all at the same time.

Love the t-shirt!

Cari said...

Sometimes, I don't know whether to laugh or cry about my infertility - but your writing has me doing both at the same time. While mine is not idiopathic - thanks endo for taking all my important bits and pieces - I still think your comments are fantastic.
I would like a t-shirt that says:
"Oh, you are pregnant again? Well, I have missing bits and pieces so would you mind fucking off?"