Tuesday, March 24, 2009

What's wrong with ongoing health care...

I've mentioned a few times here that I have a disorder call Fibromyalgia. It's a chronic pain disorder. In the US there are two schools of thought about this particular disorder, one is that it is real and needs to be treated, the other is that you're making it up.
Imagine how you feel after a really hard workout. How you feel really sore and you have a hard time moving. Imagine that feeling all over your body, all of time. That is my baseline, it's how I feel every day. Things will sometimes get worse from there, sometimes so bad that I wake up crying because it hurts so much.
I will feel this way for the rest of my life.
One thing that no doctor really explains to you when you have a chronic pain disorder is the depression that goes along with it. When it sinks in, that you're not even 30 and you will be in pain for a good 40 years or so? That's a really depressing thought.
I've dealt with this for a couple of years now. Sometimes, when I'm doling out my daily dose of pills, or I'm in bed unable to sleep, I get overwhelmed by everything.
Good luck trying to get help with that. My insurance doesn't like getting therapy in general, and it really doesn't like the idea of therapy as a treatment for a disorder.
In fact most doctors never even think that people with a chronic disorder may need to talk about it. My doctor steered me into a support group the day I was diagnosed, but never told me about how I might become depressed, or what the long term effects of an illness are. Especially an "invisable" illness. After all, I don't look sick, so I'm expected to act fine. You don't get a lot of compassion when people can't see what's wrong.
When it comes to any kind of long term illness I think the patient should be offered therapy to help get them over that inital "oh my god". And then that option of continuing should be open. Some people don't respond to support group settings. While it's nice to know other people feel the way you do, sometimes it's hard to say "I really can't do this". And if you can't talk about how you feel when you're always in pain, you're eventually going to reach a very very bad place.
I blog to get around that feeling. I don't tell people in "real life" how I feel, ever. There is no point, because quite frankly, I look fine. My boss, my kid, the people I deal with, they don't give a crap if I can't get out of bed. That's the hell of Fibro, there is literally no outward sign that anything is wrong. So I journal, I blog, and I mention it here because support groups aren't my thing.
I could probably benefit from a therapist in this regard. To help when it is just so much, when the idea of going on and on like this to too much. But sadly that isn't an option. And it should be. If we're talking about overhauling healthcare, let's put that in there somewhere. That people who have a chronic illness of any kind can have the option for therapy as part of their treatement for that illness. So they don't have to deal with depression compounding that problem.


  1. That really hit me, Leigh. Really hard. I have chronic pain from nerve damage/joint damage/organ damage caused by porphyria. I look fine, so everyone, including my hubby, expects me to be fine. I get so much shit about not being able to do things that I "should" be able to do. Sometimes I do them, and then I really regret it.

    About 3 days a week at work I end up in the bathroom crying from the pain. I can't get powerful enough painkillers because the doctors are all afraid of the DEA. Better for 100 innocent people to suffer horribly than for 1 junkie to get his fix, I guess.

    As for the depression, I'll probably live another 40 years if my kidneys don't give out, and I am NOT looking forward to it. I'm 33 and I need a cane to walk, what happens at 40? at 50?

    To be honest, suicide is like a pressure valve for me. When the pain gets too much, at 3 in the morning, in the dark, I think "I don't have to do this. I can end it, if I choose." And then I think, "but who will take care of the dog" or "but I really wanted to see that movie". It's the fact that this isn't forever, that I can make it stop, that allows me to keep going.

    This probably isn't healthy, but what else am I going to do?

  2. I understand completely. I actually walked into my doctor's office once and asked her to shoot me. Then I burst into tears. Suicide is a release valve for me too. I don't like to admit it, but you're right, knowing it's there makes it easier. I can always go out on my terms rather than live like this.
    Don't feel bad, I'm 31 and limp so badly I almost lurch. I look like a sailor just getting off the boat, heheh. A cane would probably look better.

  3. I burst into tears at my doctor's office and couldn't stop (I can't sleep more than 1.5-2 hours at a time, so big surprise I'm weepy occasionally) and he sent me to the psych ward for evaluation. The psychiatrist sent me back to him with a nasty note that basically said, "Start treating her pain, asshat, that's not my speciality!"

  4. Oh, and I got a cool, vintage cane on ebay. Not exactly hot, but better than one of those walmart canes.

  5. I actually really lucked out wih my doctor. I have a woman doctor who was familar with chronic pain disorders already. So when I came in about 2 years after I had my kid complaining of not sleeping, constant pain, and losing 40 pounds in about 3 months, she listened. By the time I broke down and asked her to kill me we had been doing this for quite a while, and I was tired (I know that whole 2 hours of sleep thing. Like walking through someone else's nightmare).

  6. i have been dealing with this new pain in the past year with my "broken" uterus, its debilitating at times, and i feel pain everyday. i started keeping track of it on a calendar, rating 1-10. most days i rate at around 2, some days i go straight from that 2 to a 9! anyhow, i can see how the pain leads to such depression. i have been so depressed lately as things have gotten worse. i just feel useless because i hurt too much to do anything, it just sucks to not feel like yourself. my relief is that surgery this summer is supposed to take care of that and then there's supposed to be no more pain (my fear is that it wont fix it). i feel like i have only a tiny piece of what your experience is like and i cant believe that there isnt more support out there for such things!

    as i see more and more commercials for fibro meds, though, i think its a step, or a sign, that its something thats getting out there and being talked about.

  7. How funny is that Vicky, I was just thinking about you this morning, wondering if you were going to have surgery. It seems kind of a specific thing to be thinking at 5:30 but there you go.
    Well, it can't hurt to have the surgery, after all, the chance of having the pain fixed is better than living the way you are until menopause!
    Heh, the fibro meds commercials sort of piss me off, they only show older women! Fibro tends to strike when you are in your 20's. I'd love to see that represented, but hell, I'm just happy that people know what it is now.

  8. At least the fibro meds move it into the world at large. I got on house twice, so I feel validated.

    Vicki: I'm so sorry for how you feel. And the whole "useless" thing? That's a terrible feeling. I have days at a stretch where I just can't, CANNOT, so much as put dishes in the dishwasher after a day at work, and I sit there feeling like a lazy lump. And I have very few real life friends left because I never go out. I'm too tired, I can't drink anyway, I'm always hurting . . .

    It's not the pain, so much as what the pain has done to my life, that hurts me.

  9. You've also been on Mystery Diagnosis on the Discover Health channel. So you have two TV shows! Ok, so only one is actually watched by normal people, but heck, two tv shows! Heheh.


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