If you look at me, you won't know I'm sick. In fact, you might think I look pretty darn good. My weight is right, and I'm not too tall or short. I'm relatively active. You may think I'm weird for dying my hair crazy colors, but that's neither here nor there. Overall, I appear the pinnacle of health.
Only I'm not.
I have three chronic conditions: Endometriosis, Iritis, and Interstitial Cystitis. All three can be very painful and all three you can't see on the outside. Well, my Iritis you can see if I ignore it long enough, but that carries the risk of losing my eye sight! I'd rather not, thank you very much.
(For those of you wonder, Iritis is an auto-immune disease. Basically, my immune system gets confused and thinks my left eye is a virus and attacks. I went through a lot of tests because it can be a sign of something else, but all those tests were negative. There's nothing I can do other than manage it and try to keep flares––what triggers them is a mystery––to a minimum.)
To control both my Endometriosis and Interstitial Cystitis, I take birth control and skip the placebo week. A lot of women report their IC being linked to their period and hormones. They can sometimes tell when that time of the month is approaching because their IC will flare. Or it will flare afterwards.
For me, it was after. I went through intense Endo pain for a week, then two weeks of IC flares. Taking the pill actually stops both from flaring. But if I eat the wrong thing, my IC will let me know, but the pain isn't nearly as severe. I can still function.
That often leads me to struggle with imposter syndrome. I'm not in pain, I'm not suffering, should I really be on the IC boards on Facebook? Should I really be this tired? Why can't I do the same things I did before the diagnosis? After all, I'm not in that bad of shape and seem to have things under control. Maybe I'm not really sick.
I worry that people will think I'm faking it. Or exaggerating. When I had a laparoscopy to diagnosis my Endometriosis, my doctor actually said to me, "Well, we know you're not faking it." That's stuck with me ever since 2011.
I know I'm not faking it. The pain is real and the damage has been done. It's just hidden on the inside where people can't easily see it, but if you really want, I have pictures.
Have you ever felt imposter syndrome with your illness? Did someone close to you refuse to believe? How did you deal with that?
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Artist and writer. IC doesn't define me. Always looking for fun hair colors to try. Lover of Doctor Who and vampires.
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