This one is always tricky for lovers, friends, teachers, parents, and colleagues. A friend running a program for students in India this past summer had a student with a chronic illness. She wanted to help this student and told me about trying to find her a couch or place to sit. This is a good and kind instinct. I don’t want to crush the desire to support and help, but this is not the way to do it. Making someone stand out and making them uncomfortable is not helpful. Furthermore, if you do offer and they say no, don’t push it. It makes us even more uncomfortable. We said no. Maybe we have trouble with self-advocacy and we do need what you offer, but pushing it on us is not going to do that. So please, instead ask us what we need.
And often, you’re wrong. You don’t know what will help us. I was in a situation in which, for a two-time work assignment, I could stand and walk around for two hours or sit for six. My supervisor assumed because I had requested one of my colleagues take a standing position while I took a sitting one before, that I would automatically want to sit rather than stand. She did not ask. She delegated me to the sitting position in a work meeting in which she made it clear she was doing this to help me. After that, how I could I tell her that the standing, because it was so much shorter in duration, was easier? Maybe some people could, but I didn’t want to risk alienating her by refusing or challenging the “help.” And if she’d been right? It would still be better to be asked what we need rather than offering help that may or may not be helpful.
Along the same theme: please stop asking “have you ever tried yoga?” I will bet that 98% of chronically ill or disabled people for whom those kinds of exercises are remotely possible have tried or thought about trying yoga (usually the very energetic Western derived kinds). You will not be the first person to suggest it. I was advised against it by two orthopedic surgeons, but I still let the hype and promise of yoga seduce me and I tried it.
I went to a class led by a registered nurse and got her approval to be in the class. She was a great instructor, she kept on eye on how I was doing and suggested I skip a few of the stretches that required a lot of torso torqueing. However, I started to hurt after class. This was what I call “bad hurt.” “Bad hurt” is not the good burn you get from working out and pushing your muscles. It is not your muscles getting stronger or more elastic. That’s “good hurt.” Instead, “bad hurt” is your body telling you something is wrong and to stop now. Right now. Before you get more hurt, before you really do damage. After two weeks of shooting pains that wasn’t relieved by hot water or rest, I had to finally agree that unfortunately my doctors were right. I had started stressing out my spine to the point where I was in danger of fracturing it. I dropped out and spent months recovering.
So if we do tell you we tried it and it didn’t help us (or it made our conditions worse), please don’t tell me about your relative or friend with said disease who tried it and was miraculously cured or recovered. We’re really happy for them, but it doesn’t mean it’s right for us, especially if we already said it didn’t or couldn’t help us. If simple exercises could cure many severe and debilitating diseases, the pharmaceutical and health care industries would be a lot smaller and less lucrative. Really. If there’s one thing that can get me off the couch to exercise is the hope that doing my exercises will help strengthen my body and prevent further degeneration and pain.
I’m trying to be better at advocating for myself, which is a continual work in progress. Many of us are, it’s not easy, and the world isn’t set up to make it easy. Listening to us is one way to make it just a little bit easier. So please, instead of telling, ask “What do you need from me?”