I was diagnosed with Lupus when I was 17, right before my high school graduation. I learned to "deal" with it over that summer, and started college in the fall of 2000. I came to school fooling myself, thinking that I was fine. And now here I am at the end of my third year of college, and I'm just beginning to realize that over the past three years I really have been fooling myself. I never sought out any support except that from my family and friends--most of whom were from high school who saw me through my worst times, when I was just finding out what was going on with my body. And they honestly have been so supportive, especially my mom, but they just don't get it. I can't express to them the overwhelming feelings that this disease has brought on to me... the loss of control, being tired ALL THE TIME, the pain in every little place,feeling like I'm losing my mind... everything!!! I don't know what it is, I think a lot of it has to do with the fact that I am at that age where college is going to be over soon, and its going to be time to find a job. All my friends are really stressed out and like me, trying to get their **** together... but I feel like when I try to express to them that I just don't feel good, they see me as a drama queen, or just wanting attention. That's not the type of person I am. I hated telling my roommate and my friends about this disease that impedes on my daily life so often-I HATE HATE HATE being so vulnerable. But I had to explain to them why I was always sleeping when they called, or what that weird medicine was that I was taking, or why I was always going home for doctors appointments. And I love my friends, they have become my surrogate family here while I'm 3 hours away from home. They open jars for me when my hands are too swollen and sore, they buy me milkshakes when I have a dozen mouth sores and can't eat, and they make me laugh, and bring humor to my life which I don't know what I would do without. I know I've been so incredibly lucky and I feel like a brat for complaining... but its like I don't want to cry to my friends anymore because I almost feel like they just don't want to hear it. They don't know anything about this disease except for what they see in me and maybe someone else they might know of... but then they compare that and think that I'm just overreacting. But they dont' understand that symptoms are different for everyone. And I don't get sick that often but when I do and I need someone to just be there, I wish I had someone to lean on that knows what I'm going through. That listens, instead of just nodding their head letting it go in one ear. This is so real, this is my body, and I don't know what will happen to me tomorrow. And I keep these fears bottled up so much because I don't know where to go to, and I'm getting really cheesy but I honestly am so frustrated with this disease, I don't know how I'm going to wake up feeling and when I feel like crap I don't want to complain about it because I don't want to be that annoying negative girl. I generally have a cheery disposition and definitely use that to cover up a lot of my issues and so maybe its all my fault that I've built up such a tough exterior that my friends don't feel the need to even ask, "how are you feeling today?" And I don't mean to sound like a baby here, but every so often, them showing that they do think of me from time to time would be awfully nice and comforting. I just don't know anymore and this seemed like the perfect place to vent these feelings. I have 3 roommates, one of which is one of my best friends and has seen the worst of my illness. But the other two I only met in January and do not know that I have lupus. And they have seen me sick several times throughout the semester and sleeping like crazy and I know that they notice, but I feel like I just don't have the energy to tell them, because then I feel like I'm giving in to the disease and using it as an excuse. But would I rather let them think that I"m just lazy and refuse to get a job? I just don't know. I mean I can barely handle 4 classes. I couldn't even think about getting a part-time job, but there again, I don't think my friends can really understand that. EVen I'm having a hard time separating the disease from laziness. This is where the "losing my mind" part comes in. Like studying really hard for tests and then to find I only got a C because when taking the test I couldn't think of the right words to use. They were on the tip of my tongue, I just don't get it! This happens all the time and I am so scared to even mention it to anyone, just for venting, that I think it's lupus related, because they won't take me seriously. There's so much more but I've had class since 8am and I'm just spent. I'm sorry this is so long, I am just so sick of these thoughts keeping me up late at night. I have to let it out somewhere and I'm hoping to find someone to relate to.
I know how you feel sometimes my brain just won't
work. Sometimes when I'm putting code into the machine
at work I can't remember it. I use these codes every
day and some days it's like I have never done it before.
What a pain. I don't know why Lupus does this sometimes
but it happens to a lot of us. Try to find a support
group a lot of hospitals have one. If not that most
colleges have someone to talk to in the clinic. You
need someone who has gone through this or a mental
health counslor someone who will listen, then you
won't feel like you are imposing on your friends.
No matter how good friends they are they can't
really understand when they are healthy themselves.
Thank you, I think I will try that website out! Good luck with your director and school and stuff. Sometimes the words don't come out right..but.. I think I'll be ok. I know I'll be ok! Thank you for the replies I really do feel a lot better and I'm really going to look into support groups...I think part of the problem were other non-related roommate issues-I went home for the weekend and have come back feeling rejuvenated and ready for this week! Wish me luck on my finals;-)....