A friend of mine shared an interesting article with me the other day titled “The Gender Gap in Pain“. This article focuses on the fact that women appear to be very much more likely to experience chronic pain, yet are more likely to be dismissed by the medical system. In reading this article, it appears women who complain of pain are more likely to receive a response that it is “all in their heads”. I don’t think I have received that response necessarily, but I have been treated rather rudely by doctors who I think assumed I was looking for painkillers. A drug-seeker. I think this has more to do with how I look than my being female.
I have brightly colored dyed hair, visible tattoos and piercings. I think the doctors assume that a person who looks like me can clearly handle pain, and while I admit I have a very high pain tolerance, what I do with my body has nothing to do with my illnesses. Getting a few hours of tattoo work done is not the same as living in pain daily, modifying my entire life to revolve around this situation and otherwise reducing my quality of life. The thing is, when I go to the doctor, I am not looking for pain meds. I am looking for a solution.
I do not want to mask my pain. I do not want to become dependent upon some pills. I want to find a reason for these problems, find some resolution or at least a treatment plan. It took me five years to be diagnosed with fibromyalgia and chronic fatigue syndrome, only because I finally met a doctor who seemed to have an investment in the health of his patients. I can’t even recall how many different types of medical professionals I have seen and how many have just outright dismissed me as being a lost cause. Countless others have described me as a “special case.” This gets incredibly annoying to hear; if I am so special, why doesn’t someone sponsor me? I’m only slightly joking. Surely it’d make a hell of a research paper, or something.
On this topic, recently Shannon Larratt, a body modification pioneer of sorts, has passed away (by his own hand). He left a very lengthy note which highlights some of the issues he ran into with his medical care, parts of this note are in the article. He was suffering from a rare genetic disease. He was a Canadian and it appears from the article that there are actually quite a few similarities in the healthcare in Canada and here in the United States. In part of his note which struck a cord with me, he writes, “…I believe this was in part because of the prejudice of multiple doctors due to my appearance causing them to stereotype me as drug seeking (and the simple reality is that it can be hard to tell, and we are so cruel as to prefer to “punish” the sick than to “reward” the mentally ill). I wish there was some way to make those doctors understand the cruelty they enacted.”
If anyone wants to read his note in its entirety it is on his blog, but be warned, the content is very emotional and heavy. I was in tears by the end.
I don’t think I am suffering nearly as much as Shannon did, as he was diagnosed with a very rare disease known as tubular aggregate myopathy, which I admit I had to look up as I had never heard of it. But, why do I compare how much I am suffering to someone else? Why would anyone compare like that when it comes to chronic pain? Do you think this is what doctors do? Perhaps it is.
I have noticed just in my personal life that when someone I work with is sick, someone is bound to say something that suggests they do not believe they are actually sick, or they do not believe they are ‘sick enough’ to stay home and rest. What causes this? I’ve noticed it also when I happen to mention being in a particularly large amount of pain, others sometimes roll their eyes as if I am dramatizing something as small as a paper cut. I tend to keep my mouth shut. This even means over the past five years of dealing with this pain, only a few particular instances have been extreme enough to allow me to express my feelings to a doctor. Especially while my lawsuit was still in progress, I did not want to give opposition any reason to label me a drug seeker or addict. I kept quiet about my pain for a long time, until I was either in too much pain to eat or breathe, or until I found a doctor I could trust.
Have any of you experienced what you perceived to be discrimination while attempting to receive healthcare? What do you think they were judging you on?
I have heard from a couple people who state they were treated differently when on state funded healthcare programs as well. Let me know your thoughts, I am interested to hear other peoples’ experiences. I’d also like to hear good experiences because all this negativity can really make me feel sad for the state of affairs currently, though I am hopeful things will change if enough people speak out.