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Things that are not helpful, part 1

March 26, 2009

I stopped by a senior center today for my *real job. I call on these places occasionally to promote the mission of the non profit which I represent, to drop by some materials shake babies and kiss hands- that sort of thing.

So I go in to the office, and I know these ladies because it is a city senior center, and I am a resident. And they are the sweetest people ever, they really are. One of the ladies notices my wrist brace, and asks me. why I wear it. I let her know that I have RA and give her a quick definition of what RA involves. This is also part of my job- to represent a real face of this disease and speak knowledgeably about it.
But.. she takes me back to her office and gives me the business card of a naturopath. SHe then begins lecturing me about my diet, and how if I would only cut out sugar, dairy, gluten, meat, all pesticides and [reservatives then I would be cured- oh wait- I will also need to buy some supplements. This is a wonderful woman, who has the best of intentions. My mom also with the best of intentions gives me a book about this unproven remedy that is supposed to cure RA. So why am I angry?
I am angry because it’s not that simple and it’s not fair. I’m angry because I shouldn’t be angry at people who are trying to help me. But this is how I see it;
You read a book, or have a friend of a friend that had this one treatment work for her.
You tell me about this great treatment, about how there is a conspiracy with western medicine to keep me sick.
I have two options; I either take your advice wholeheartedly, despite what my doctors say. I spend money, I take supplements, I suspend my faith in science and go for it. Maybe I will get better, and then you will say I told you so, or maybe I will get much much worse and by the time I decide to throw the fight back to the doctors, I am really crippled. Maybe I should have had a better attitiude.

OR– I don’t or can’t for whatever reason. I don’t have the luxury of doctor shopping, and I certainly don’t have the resources to spend hundreds of dollars on supplements. So I don’t take the advice, I don’t see the homeopath- I go to my regular doc and they do their best to help me. But what happens the next time I see you? I didn’t take your advice, so now it’s my fault that I am still sick, right?
If I was in a wheelchair would you tell me to cut out sugar and I would get up and run?
If I was diabetic would you tell me insulin was a conspiracy by drug companies?
It’s not that I don’t agree that some alternative therapies are valuable, they are called complementary therapies and that means they help- it doesn’t mean a cure.
I know in my heart that people make these pronouncements because they care, and it is their way of asserting control over a disease that scares them. I get it. But frankly I have enough to deal with, without people working out their anxiety in the face of chronic illness and using me as a proxy for all these emotions they don’t like.
Chronic illness sucks. And it’s not fair, or reasonable. It just happens. It didn’t happen to me because I ate sugar, and it won’t be cured tomorrow just on your say so. Don’t blame the victim. Shit happens.

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