Today my exercise group had a potluck to celebrate people's birthdays for January, February, and March. I got the chance to talk with one of the ladies there who is (somewhat) close to my age. I'll call her S. S and I discussed the difficulties of being young and dealing with our illnesses.
There were so many topics where we were like "Oh, that's exactly how I feel!". I thought that I would share my thoughts on some of those topics and see what you have to say about them.
I always have to think about my health and my illness. S. and I both agreed that it's pretty much impossible not to think about our illnesses and our health. She has a very strict diet she has to adhere to, and I'm always trying to maintain my health by eating healthier and avoiding germs.
People have a hard time understanding what I am going through. Family is the hardest to deal with. They aren't always sympathetic or understanding. Most of them have been very healthy their entire lives and can't understand what it's like to never be at optimal health. And we've both heard too many times "But you don't look sick".
People (especially my family) assume that because I'm taking medicine, I should be fine. Medicine is the magical cure-all. A doctor will prescribe you a pill, and a few weeks later, you will be all better. That's how it works. At least that's how it works in my parents' minds.
I'm always getting compared to other people who have Lupus. "I know a person with Lupus, and she goes through many years of remission" Good for her, I haven't really reached a point of remission, yet, but I'm looking forward to it. "My friend has Lupus, but she loses her hair. You have a nice head of hair." Yes, I have a full head of hair. Lupus is different for everybody. Just because your friend is one way doesn't make what I'm going through any less valid.
Dealing with the fact that I am so young and should be healthy is hard. S. was young when she was diagnosed. I was 19. People my age are supposed to be healthy. A stereotypical person my age would be going out and wearing out their bodies. Sunbathing, drinking excessively, staying out all night, partying, eating disgusting junk food... I'm a little sad that I won't get to take part in that.
Work...It's almost impossible. Joint pain, fatigue, frequent need for bathroom breaks, and the timing of breaks and lunches are just a few of the problems we face in the working world.
And a statement from S. that I thought was undeniably true: "I live with my boyfriend. There's already enough trouble dividing up chores. And since I'm always sick, it's hard to do my share. I don't want him to feel like I'm taking advantage of him, but I have barely any energy. I'm very lucky that he's understanding and will help me out."