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12 March 2010 @ 04:11 pm
On chronic pain  
It's Friday, which would normally mean I'd be at work, but I woke up this morning with a badly fuzzy head. I had the same yesterday, and the only reason I went to work then was because some people were coming from Sydney to discuss a major project I'm working on, and I really needed to have some discussions with them. Working while your head's full of fibro-fog can be done, but I really don't recommend it.

I have some other posts I'm working on at present, but this morning naamah_darling's latest post, about the difficulties of getting help for mental illness, really struck a chord with me. Particularly as this post was prompted by a particularly insensitive comment, that mental illness can be fixed with medicine and most mentally ill people don't bother to seek help. I've experienced this sort of attitude myself, in relation to mental health problems... and also, I'm sad to say, about physical health problems.

Even in discussing Crohn's Disease, there's people who think I'm "pandering to my illness" somehow by refusing to eat certain foods, and mentioning quite a bit that I avoid them (mostly). But when some foods are really common, like gluten and milk products, and you have to be really careful about how much of them you eat, you don't have a choice but to constantly explain to people you don't eat certain things, and why. And there are people who think I'm making Crohn's Disease up, even though I can wave pictures of medical books under their noses, with pictures of severely inflamed intestines, and say "this is what part of my intestine looked like before the surgeon cut that bit out. Twice." Yes, I have had to do this. Even with people who work in the health profession. It's deeply, deeply annoying to have to practically whack people over the head with surgical text books before they'll believe you (or at least realise they should shut up).

But Crohn's Disease, like many other serious health issues, at least has major physical symptoms. Unexplained nausea, vomitting, extreme weightloss and diarrhea at least point to there being something seriously wrong. What about those diseases whose symptoms don't manifest quite so dramatically?

Last night, I saw an interview with one of Australia's leading pain specialists about the poor treatment options chronic pain sufferers have, and the lack of understanding they face from the community. Chronic pain, I would suggest, is a physical symptom that's almost as frustrating to get help for as mental illness. In many ways, pain is a very subjective thing. Some people experience pain far more acutely than others, and then there's situations, such as period pain, that are (to a certain extent) universal, so when people get severe period pain, they can be dismissed out of hand and told to put up with it (and yes, that is personal experience). And many don't understand the difference between acute pain, and chronic pain. When you break an arm, it's expected you will feel pain, and you'll (hopefully) have this managed as part of your treatment. But once the broken arm's healed, the pain should go, right? What if it doesn't? And what about headaches? Obviously, if you suffer from constant headaches, you're spending too much time staring at a computer screen, so you need to get outside more. And get some exercise. Migraines? I've never had one, surely they aren't that bad?

If you are in constant pain for no clear reason, the first step you have to take is to realise yourself something is wrong, that it can't just be explained away as "one of those things." I often wonder how many women who've died of ovarian cancer dismissed their period pain as "something I have to put up with as a woman." I suffered from constant, debilitating headaches and upper body pain for over 2 years before I realised it wasn't just insomnia (the pain in fibromyalgia tends to cause the insomnia, which can make the pain worse, thus causing a nasty recursive cycle). And for a couple of years, my mother has suffered severe, crippling pain in one leg. She's had sciatica on and off for most of her life, and thought the pain was the same thing. She knew how to manage the sciatica, but the treatments haven't worked for a while, and she realised there was something more to the pain. Yesterday she was diagnosed with osteo-arthritis in her right hip.

After you've realised your pain indicates something more than just tiredness or what have you, trying to get someone to take you seriously can be just as hard. When I first saw a doctor about my pain, when blood tests, x-rays and CT scans didn't reveal anything beyond known existing issues (like the 2 partially fused vertebra in my neck), he basically dismissed the whole thing out of hand and didn't bother looking any further. Clearly, there was nothing physically wrong, so I couldn't possibly be in pain. I don't see him anymore unless I need a script on my file filled and there's no one else at the clinic available. It took several more doctor's visits, and more tests and (failed) treatments, before I finally got the fibromyalgia diagnosis I'd suspected.

And again, how many women have been told period pain is just something they have to put up with, only later to find out it was a manifestation of ovarian cancer, or something else out of the ordinary? Even if it is "just" bad period pain, there's a stigma attached to getting medical help for it. There seems to be an attitude that because all women get period pain, no one needs any help dealing with it. As though we should be able to put up with the feeling that someone is driving a white hot poker into our bellies, or twisting us like a dishrag.

As for my mother? She tried for several months to talk to her doctor about her pain, to be dismissed with a "you're getting old, it's to be expected."

The pain specialist interviewed last night feels there is a suspicion that chronic pain sufferers are really junkies looking for a fix. Ask any migraine sufferer about it, and they'll probably be able to tell you about not being able to get morphine injections from ED staff, even though they know it's the only thing that will help. And if chronic pain sufferers don't take strong pain medication every day, they can't function. Maybe we do get addicted to the meds. Hey, the meds mean I can regain some capacity, even feel normal some days. When I don't take my pain killers, I can't function. Simple as that.

There's many people out there who don't understand what it's like to live with a chronic, physical illness, or a mental illness. They'll tend to dismiss our suffereing with comments like "you're making that up," "it's all in your head," or "I think it's just attention-seeking." Or, they mouth platitudes like "everyone has their crosses to bear" or "there's plenty of people worse off than you."

That, folks, is crap.

Suffering of any kind is NOT a sign of mental or physical weakness, and sufferers need sympathy and real help, not empty statements and hostility. There needs to be much more education and discussion about chronic health problems, be they mental or physical. Just as there needs to be more effort put into understanding them and treating them.
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Current Mood: pensivepensive
Sodysodyinoz on March 12th, 2010 08:43 am (UTC)
Agreed *hug*
J. Kathleen Cheneyj_cheney on March 12th, 2010 02:27 pm (UTC)
Yes, some people just don't realize how lucky they got in the genetic lottery. And they refuse to believe that others aren't all the same as them....
Dreamwind, Deranged Academic in training: The Unknown Cactusdream_wind on March 12th, 2010 09:19 pm (UTC)
That's it exactly! And these are the people who carp on about the "evils" of universal health care.
Nat S Ford: painnatf on March 14th, 2010 07:41 pm (UTC)
Yes, this is truth.
(added to memories)
Also, tweeted.