I'm 17 yrs old, and was diagnosed over a year ago with SLE. Its awful when you tell people what you have but you can tell they have no idea what Lupus is. Though I've been coping fairly well to the life-altering changes i've had to make, its like everything hit me at once about how i can never return to the lif i lost, and recently I had a 2week-long breakdown, much to the dismay of my teachers and friends.
Now that i'm back I just want to get on with it, but the teachers look at me like i'm about to drop dead, and my friends want to know why i've been off, but i don't want to be the person who moans and groans about their health issues. My head teachers have recently told me that if i don't get my act together i'll be kicked out of school (politely of course).
Its making me realise that those of us who do have chronic autoimmune diseases are never really going to be understood by the rest of the populus, and unfortunately that's a burden we have to bear. I don't want to tell my friends about my crappy disease, because they know me as a happy cheerful person, and i don't want to ruin the person they know with depressing stories of my disease.
Even though this disease has come at the worst possible time (in the middle of my A level examinations), I'm beginning to see that its now part of who I am, and though I hate the fact that i know have to declare my state of health on every bureaucratic form, having Lupus has given me a unique understanding and insight into the life of one with a chronic disease: Its changed me for life, but in a different way- its given me empathy and experience, which has helped form who i've had to become: a much stronger person.