Friday, August 14, 2009

The what?

I've been blogging for, what, five years? And recently something's struck me. I have a blog about work, and about the NYC subway. I have one to post short stories on. I have one about the wedding, and one about being vegan. I have one dedicated to cross stitch, for chrissake. In total, I have 12 blogs, and I write weekly on another. And not one of them has to do with the condition around which my life is practically built.

And what is that? Well, I've been "sick" since I was 17. I wasn't diagnosed until I was 21, at which time they came up with the big and fancy word fibromyalgia. Super simple definition? Syndrome what causes pain in tissues that aren't bone... and some other stuff. Feel free to google it; just ignore all the hits for prescription meds.

It's not just that I don't have a dedicated blog about it though. I straight up don't write about it: not until it forces its way into my consciousness so loudly that I can't think of anything else for hours or days (or occasionally weeks) on end. But even if I do occasionally write about it, it doesn't feature. I have no tag for "fibromyalgia". I don't have one for "pain", for "muscle spasms", for "another sleepless night", for "migraines", for "side effects of prescription medication". Until about two weeks ago, I didn't even have one for "health".

Why? Because I don't like to think about it. More specifically, I like to not think about it, pretend it's not there. My illness is the basis of many of my daily habits - but, who among us thinks about the motivations behind our daily routines once those routines are in place? I would contend that the purpose of routine is so that daily life does not require constant thought.

It's true, though, that sometimes I do write about it, in blogs and elsewhere. This past winter, I went through an odd bout of localized flare-up that made it rather difficult to walk for a rather long time. It was really quite focused on my right foot and sometimes knee. So my brain was just fine, while my right leg said, "Subway? Are you effing kidding me?!" Housebound and frustrated, I pushed out a zine which I called The Plage Project. I published it through and then posted it on Etsy, and for months on end it met with a huge response from exactly no one.

And then, a few weeks ago and seemingly out of the blue, I received the following message through an Etsy convo:
I think it's the third photo, the one about thyroid... Actually brought a tear to my eye... I've been through that dance SO many times. it took ten years for me to get the fibro diagnosis.

And, I dunno, I just wanted to thank you for writing about it, talking about it, sharing it. It's hard, and I really admire folks with the courage to even try to explain it. Gives me a lotta hope.

I don't know if you'll care, or if it'll mean anything to get this, but I hope so. It means a lot to me that someone else gets it.
It was like being knocked down. You write zines, you throw blog posts into the world, and you sort of fantasize that someone somewhere will have this kind of response to it. It never happens. Except that sometimes it does.

Lately I've been going through a bad time again, the kind of time that reminds me, oh yeah, it really is chronic. This is something I always know as fact. I am also aware of the fact that it can get worse at any time, and may or may not ever get better. And it's pretty likely that no one will be able to tell me what's happening or when it will change. Yes, I know all of this. And yet, every time things get rough it knocks me for a loop and I get all emotional. Because no matter how much you know it, it's still hard.

So I've decided, finally, to write a blog about it. For two main reasons I suppose. The first is that I fear this complacency of mine leads me to dangerous waters. Instead of progressing, if I could even do such a thing, I am only maintaining. I ignore pains for too long, pains that might just be status quo but might also be something that need to be looked into - like my current pinched nerve situation, that I could have started treating weeks earlier had I been paying attention. I forget that just because I feel alright enough today to get up and go to work and do the things I need to, that has no bearing on tomorrow. And in fact, if I try to do too much today, chances for tomorrow being bearable grow proportionally slimmer.

The second is that - and this is going to sound wickedly pretentious - if my words could be consoling to one person, maybe they could be consoling to others. This girl who wrote to me, who I've been in some contact with now, seems to have found something really significant in what I had to say about this situation that we're both in. That is, the situation of being relatively young and dealing with the complexities of having a chronic, painful, and "invisible" illness. It's kind of like when you read Catcher in the Rye when you were in high school and you were like, hey, I'm not the only one!

Am I now comparing myself to J.D. Salinger? No not really, I swear. But you know what I'm saying. It's always better to know that you are not alone. So maybe I'll just say it. If you're in your teens or twenties or thirties, struggling to put together a livable life, and simultaneously battling chronic illness, you are not alone.

It still sucks ass though.

So let's talk about it.


  1. Hey! It's Carrie from etsy.

    Excellent. So happy to see you're blogging about it!

    And yes, absolutely, it is fantastic to know you're not alone :).
    Thank you again for reminding me.

    Take care!

  2. Hi Carrie! Happy to see you here, and happy that you're happy. (And that's a lot of happy. It's like happy cubed.)