Monday, April 18, 2011

Being chronically ill (and not loving it) (TW for graphic content)

I've wanted to talk about my chronic illness(s) for awhile, but two posts further lit a fire under my butt to do so.

From Renee I am particularly sensitive to claims that I am faking, because I know that fibromyalgia is a condition that many simply doubt. I have had a doctor tell me point blank that she did not believe in fibromyalgia.  This condition is further complicated because it largely effects women.  Medically the idea that women are simply hysterical and have no concept of how our bodies function is not a thing of the past.  As much as disableism is a part of the skepticism involving fibro, so is sexism. Fibro is a great example of the ways in which gender impacts our understanding of disability. It is discounted because it is difficult, if not impossible to medically prove, and because it happens largely to women, it certainly cannot be real.

The other post has been removed, but it was from a dear friend of mine, from college. And since it was removed, I won't post the content without her permission.

I have three chronic/invisible illnesses: GAD (general anxiety disorder) Endometriosis, and IBS. The last I'm not completely sure of because the digestive pain I feel could be endo on my bowels and while I did have a colonoscopy senior year of college (cause that totes how I wanted to spend my spring break...), the doctor refused to return my calls after to talk about the results. But that's a whole 'nother issue.

I've dealt with this pain most of my life. The digestive issues started around eleven, when puberty started and the horomones that trigger the endo spasms started a-flowing through my body. My mother suspected I had endo because she herself has it. I've been accused of faking, much like Renee has. I've had two bosses tell me that I didn't look sick. Looking sick is apparently the only way to legitimatize your illness.

I apparently should have invited the two bosses into my bathroom. Bluntly? I shit, a lot. My body is seized with pain and sometimes it hurts to move and it hurts even more to sit still. My body doesn't function like other people, like 'normal', whatever that means. I get incredibly painful spasms that feel like a knife twisting and thumping in my abdomen. They can last for several minutes, seconds or sometimes hours. My loved ones have to sit by and feel helpless. My husband will rub my back or bring me the bottle of Grey Goose that is usually in the freezer.

Yes, alcohol is most often my pain reliever of choice. I do alternative healing, like a mixture of herbs that my boss made up for me, I get massages, I use heating pads, etc. But since I don't want a prescription for heavy narcotics (not to bash anyone who uses them, they are good for what they are, they are just not for me) and Midol is a freaking joke, I usually drink. It was the only thing my mother could think to give me when I was wracked with pain in high school and it's usually the only thing that works now. I say usually because sometimes it doesn't work at all. Sometimes, I have to lay, screaming, on my bed in pain because nothing is helping.

It's humiliating to have such diseases; no one can truly understand the pain we who have invisible diseases go through. With anxiety, it's crippling because you feel trapped inside your mind. With the endo or IBS, you feel ashamed to ask for help, or to ask to make the multiple bathroom stops that inevitably result from a flare. It is incredibly frustrating to have to spend whole days in bed or call out sick from work because you can't muster the energy to move or do anything. Some days, you have to save your spoons for another day.

We women are made to feel even worse. We don't own our bodies, at least here in America. Our bodies are always for someone else and truly feeling comfortable in your body, even without the pain of a disease, is hard enough. I've had diet pills and cosmetic surgery offered to me, in leiu of someone actually believing that the pain I went through on a daily basis was real.

It can be incredibly lonely to go through something like this alone. While it is heartbreaking to know that other women and men suffer like this, it is gratifiying to know that you aren't alone.

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