I want to talk about something most people don’t think about and it’s something most people are guilty of without realizing it. If you know anyone who is sick – either chronically or temporarily – it’s something you’ll want to read.
I still stick around in some online chats related to the game I used to play/moderate and have developed and maintained friendships from people around the world. I began talking to one girl shortly before she was diagnosed with cancer. She’s a young girl in her early 20s, and it sucks to have to go through something like that especially when you’re young. She knows my health situation and that I find all health and illness topics interesting, so I told her to keep me up to date with the experience. We spoke off and on, she told me about all the shitty things she had to deal with – physical discomfort and the mental challenges that go along with some of the procedures… the cancer’s effect, the drug side-effects, uncomfortable preparation for exams and operations, etc. After talking for several weeks she thanked me. She told me that she spoke to many people about her situation, friends and family, but talking to me was so refreshing. It’s not because of something I did, but rather something I didn’t do: I didn’t tell her “You’re so strong, you’ll get through this!” “Keep fighting, we’re all behind you!” or anything like that. I listened and replied in a very matter-of-fact manner about the realities of dealing with such a thing: it sucks. I didn’t insist the future was bright, because when you’re going through such an ordeal you’re concerned with the here and now. She told me that my reaction was so refreshing because everyone just kept telling her to get through it and fight hard. On top of her existing pain and discomfort, comments like this also made her feel like she was letting people down by not being stronger throughout the ordeal. I explained to her that I reacted this way because I had gone through the same thing myself many times over for as long as I’ve been sick. When you’re sick or otherwise uncomfortable or in pain, people feel like they need to do something about it. In my experience, that means that they do one of two things: The worst of the two is they’ll offer stupid advice, suggesting you try something that either would have no effect or something that you’ve obviously tried when the problem first started. To give an example of each, one person suggested I try chicken soup to cure my ME/CFS symptoms, and another suggested that I try getting more rest. The other less ridiculous reaction people have is to offer verbal support: things like “You can do it! We all believe in you! You’re so strong, you can beat this!” Unless you’re the only person they’ve ever spoken to, they’ve heard this dozens of times already ad nauseum.
Often when somebody talks about the issues they’re having they just want somebody to listen and understand the things they’re going through. Personally, when I bring up the fact that one or many of my symptoms are really bothering me, all I want is for somebody to know that it sucks. That’s all I need. The pain or discomfort will pass, I already know what I can do (if anything) to help, but for now I just want someone to understand what I’m going through.
Sometimes I feel obligated to let people know that I’m not feeling well because I can tell that the discomfort is affecting my behavior. It hasn’t happened as much in recent years, but especially during my teens when my illness was just starting to take off I would frequently have people misread my body language. People would ask me why I was mad or sad when in fact I was just feeling sick. After so many years of this, I learned to explain myself before there was a chance for people to make any assumptions.
If you’re reading this and have been guilty of the things I mentioned in this post, don’t worry about it, most people are. You don’t need to apologize to anybody or even feel bad about it. It’s just one of those things most people haven’t realized or ever thought about. Just keep it in mind for the future and you’ve done your part.
Shaking Off the Chains 