One of the biggest complaints I hear from fellow j-pouchers and IBD patients is that they are often hear, "But you don't look sick." I agree. This is an awful thing to hear when you are in constant pain and struggling to make it through the days. What should we look like? Do we need to be lying on our death beds before the pain is appreciated?
During my final flare with a colon I had a first year doctor during my hospital stay at Jefferson Hospital. I entered the hospital on July 9th and new doctors begin their rotations on July 1st. This young man was fresh out of med school. He treated me respectfully during each exam, but at the end of my stay he came to me with a confession of sorts. He told me the nurses were right. Patients with IBD are best at covering their disease. Even in the medical world we have a reputation of having the complete invisible illness.
I have to admit I find this to work to my advantage. I never wanted to be treated differently by my disease. I have always hated the looks on peoples faces when I disclose my illness. The look of pity. I relish the fact that I can escape judgement by not telling others what I have to deal with. I don't want special treatment that many feel is their obligation when you tell them that you are sick. I want the same standards that everyone else has. So while there may be times that my illness is misunderstood, I would rather have to continuously explain it than deal with the looks every day.
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