Facing Autoimmunity Alone

3 a.m. and here I am, awake, and dealing with an illness no one knows but me. At least that's how it feels. I'm reading through medical journals about treatments and driving myself mad over what is to come for me, knowing none of them can predict my future. The one thing I can tell you, that any dr can tell you, about scleroderma, every course runs a different route, so no ones race is the same. Hooray. I try hard not to be pessimistic about the whole thing; I have lived... longer than some, and lived a better quality of life than a lot of the people I've met with the disease. This past fall at the gala in Columbus, I actually felt out of place. I was the only "patient" there you couldn't tell had the disease. Scleroderma is very visible; maybe that's why my most recent dr was so confused. Maybe that's why he gave me false hope. But the visible part I take with me, at home, every night behind closed doors. The restless nights, the coughs, the dry mouth, the medications, the weight fluctuations, the food I can't swallow, the nights I sleep for twelve hours and still need more, the crying fits, the agitation, the dry skin, the inflammation, the migraines, the muscle pains, the shortness of breath, the uncomfortable joint pain, the white fingertips from the slightest decrease in temperature, the sheer exhaustion, the Dr appointments after work, so many things I hide from the world, to make me "my look sick" like everyone else with this disease, and it's tragic. Not because I want to feel included or I want others to know what I go through. It just isn't possible. Truly, no matter how much I write, until someone faces their own mortality, until someone lives daily as a patient, then I remain invisible, walking behind these curtains, with my diseased counterparts, ostracized even from them, because I don't "look sick."www.facingautoimmunityalone.blogspot.com