I hate having to check myself before I do anything. It feels oppressive, unfair and wrong. And yet I do. Check myself. I check myself before I comment on how I feel or mention if I’m doing something “normal”, or potential energy consuming. There is no law, at least not one on the books, that says I need to do this. But I do. Because I have lupus.
Trying to get people to understand lupus can feel oppressive or unfair. Because it takes up precious energy and uses emotions which take up energy and I have lupus. So it’s oppressive in some way. But I talk about it, I try to help people understand. And I feel the weight of responsibility, which can be oppressed.
Trying to balance hanging out with friends, having a vacation and living with lupus can feel oppressive. But I’m not dead. I have a job, a life, love and such. And now and then I feel almost like who I used to be. So I do things I used to do. And then feel guilty about this because I have lupus. And that guilt is very oppressive. I’m not sure if this again is a self imposed law, but I can’t seem to shake it. I have guilt because I can do things I know other lupus patients can’t. I have guilt because just when people sort of understand my lupus, I do something so normal that it’s like I’m saying my lupus isn’t that bad. I have guilt because friends and loved ones have to deal with the rapid change of lupus and our plans. And it’s all so oppressive and unfair.
So I check myself. I edit my actions and words. I edit my dreams and my choices and I feel the oppression of all of this as well as the weight of being sick. It’s unfair to those in my life,because I am never able to be completely free. It’s wrong because I want to be transparent, but I don’t want to create more worry. So I check myself. And it feels oppressive and I hate myself for knowing what I’m doing and still doing it. And yes, I just checked myself again before sending this off.