Being chronically ill is heartbreaking.
Having to listen to other people’s “advice” is exhausting, especially when it mostly consists of “Have you tried…?”or “This person is/has/was/… and X healed them!”
It all makes my skin crawl with annoyance.
Worst of all though is the “Just be positive,” “I’m sure it will pass,” and “You’ll get better” statements.
What part of “chronic” do people not understand?
I’m literally watching my body deteriorate before my eyes. Not being able to intervene and having to look at the fact that this is probably as good as it gets, since I’ve realized my future holds more pain, wheelchairs, doctors, treatments, appointments and an even worse social life. Hearing those well-meant words is a painful reminder of my situation. People just seem to not listen and I end up accommodating them to avoid conflict and possibly hurting them with the agonizing truth.
Friends leave. They give up and realize we don’t have anything in common anymore as they go pub crawling, while I literally crawl between the bathroom and my bed. I try to keep up and I desperately want to, but physically it’s impossible for me.
I sometimes get stuck in the pit of pitying myself and the whirlwind of thoughts it accompanies. I didn’t ask to be born this way. I didn’t wish for my life to turn out this way. I try to make the best of it, but the very unfair comparison of my peers to myself pulls me right back. It’s heart-wrenching knowing I should be able to keep up with their pace, but I can’t.
I know there are a lot of people like me out there. People with similar thoughts and experiences, but I still feel alienated and lonely –like no one understands, like I’m alone.
Life keeps punching me straight in the face, and quite frankly I’m tired. I’m allowed to be tired sometimes; after all, I’m only human. You can’t expect a person in my situation, or anyone else for that matter, to keep going endlessly. I do not need to excuse my need to rest.
It’s funny, when you’re not battling a debilitating illness, you can rest all you need without people pestering you about it. You can binge watch Netflix for hours, chat online or just nap. But in my situation for instance, where I don’t live alone, I constantly need to work for it. Just laying in bed one day because I’m in excruciating pain, makes people think they’re allowed to press their thoughts and feelings on me about the fact I’ve barely moved all day. “You should go outside and get some fresh air,” comparing me to themselves, asking me to understand how seeing me makes them feel.
I know they mean well, but here’s the truth:
Sometimes I just need to be allowed to do my thing.
I’m an expert on my body and what it needs, and sometimes all I need is rest and plenty of naps through out the day.
I do not need to “deserve” it anymore than anyone else my age. When I’m doing well, I’m active, go to classes and do other “normal” things, but it never seems to be enough for the people around me.
Please, just listen to me. Respect my choices and trust me to take care of myself. I don’t need pestering or pressure. I know what my body needs and I don’t need a reminder that I’m not able to keep up with people around me. It’s painful and unnecessary.
If I want or need advice, I’ll ask for it. Please don’t pressure your opinions on me. Respect that my treatment professionals and I know what we’re doing.