Make Your Own Way
Two years ago I kept seeing this post on Facebook with a list of things that people should stop telling people with chronic illness to do because it’ll make them better. The list included things like Yoga, exercise, eating better, more sleep, etc. It was basically a list of common things people suggest when a person isn’t pleased with their appearance, not a list for someone whose body cannot physically function that way because of a chronic illness or disability. I understood the outrage from those who posted about it and left it alone.
I have also been on the receiving end of a well-meaning stranger who said that if I go to this particular hospital, and meet with a certain doctor they would be able to help me walk. I listen, politely tell them “thank you”. Many people have said similar things to me with no results.
Then I would wheel on my merry way, shaking my head at their presumptions, like my parents hadn’t already considered every option possible at the time.
The post enraged me every time I saw it, but not for the reason one might think. Most people might think I would be angry because the suggestions are everyday solutions that don’t account for what a specific chronic illness or disability might target. However, the thing that made me angry was even though the everyday solutions won’t cure you of your medical diagnosis, some of those suggestions could help with alleviate some of the difficulties one might face with a chronic illness\disability. I feel like you think I’m being judgmental, but just hear me out.
Obviously, telling someone who suffers from insomnia to sleep more is ridiculous. Their brain chemistry doesn’t allow them to sleep. However, there could be some natural remedies they could try that are relatively inexpensive if they’ve tried them, or it’s not cost effective for the results someone has then that’s fine to tell them to stick it where the sun don’t shine.
I think people automatically dismiss holistic remedies because they typically require a bit more maintenance than going to a medical doctor who can just give you a prescription. I’m not saying holistic medicine will solve all of your problems, some problems do require hospitals and medications. However, there are other options. You just have to be willing to look.
I’ll give you an example from my own experience, I have Cerebral Palsy, and one of the treatments to help manage that is physical therapy. I think when I was in high school I had a physical therapist let me go as a patient because I didn’t do the exercises she asked me to do at home.
Then they opened a Fitness Center with adaptive equipment so I went there instead of physical therapy for a little while. I would go 1-2 times a week during the times I was consistent. It was also inexpensive so I paid for it out of my own money. I was actually in shape. I still couldn’t put myself to bed, or take myself to the bathroom but I felt better about myself physically. Then senior year I went back to Physical Therapy to prepare for college. I can’t remember if I was let go again or my therapist left.
Either way, I went to a different therapy clinic and had an awesome Physical Therapist who not only understood me as a patient but as a person as well. I graduated and went away to college where I realized with the right set up, I could be relatively independent. Flash forward a few years, I live in a studio with my best friend and a dog in a small studio 20 minutes by bus to downtown Chicago.
I don’t have an accessible shower and my aide who is my roommate has to help me with basically everything. The one thing I do have, though, is the ability to get myself back into shape so I can be more independent. I can’t get to the local Fitness center right now so I do YouTube seated workouts videos at home.
I know working out isn’t possible for everyone. I’m not saying it is by any means. I just want people to realize just because you are chronically ill or disabled it doesn’t mean you have to automatically dismiss every suggestion because while that exact course of action doesn’t work, it might lead you to something that actually can help make your life easier.
You just have to find your way. It’ll be frustrating at first because it might not be as easy as you think, but when you find your way you might be able to make another person’s path easier in the future. Shouldn’t everyone just cater to everyone else’s needs? It would be nice, but the world, unfortunately, doesn’t work like that so you have to make your own way.