It’s inevitable, if you are chronically ill people can’t seem to run over themselves fast enough to offer some advice regarding what you should do to get better. Whether it’s family, friends, coworkers, or perfect strangers, it seems everybody has heard of some amazing new miracle cure that is sure to help you. Even if they hadn’t heard of your condition until five minutes earlier.
“Crohn’s? What’s that? Oooooh. Hey I’ve heard that people fix digestive issues with by giving up gluten, have you tried that?”
We know you mean well. It’s instinct, you see a problem, and you want to help fix it. But it happens time and time again. What started out seeming sweet soon becomes just a constant reminder that everyone thinks we’re incompetent.
Even though it is presumably motivated by a desire to help, the tendency to offer advice, cures, and suggestion, consistently makes the lists of disabled and chronically ill people as one of the top “Don’ts”.
When you live with chronic illness, you look into everything that might help. I know more about the research that has gone into Crohn’s disease than many doctors. I’ve talked to my doctor about parasite related therapy, about fecal transplants, we’ve discussed various different options medication wise. I’ve tried special diets, I keep track of which foods set me off and which don’t. I collect studies on the various new research being done regarding people like me who don’t seem to respond to conventional treatments. I know almost all of the latest theories regarding the possible causes of Crohn’s and the supporting evidence.
I subscribe to Crohn’s forums, have mane Crohnie friends with who I share information, I browse regularly looking for what other people have tried. And you think you can tell me something I haven’t heard of before?
I’ve done everything I can to get better. I am doing what I can to function and maintain a better quality of life, and I would rather not spend the spoons I have having to explain to someone why the treatment they know nothing about doesn’t work for my specific condition that they know nothing about. I would rather not have to disclose all my private medical information to random people just so I can explain why no I don’t respond to this particular treatment.
It’s invasive and presumes that you know better than someone living with the condition. It presumes you know better than the myriad of doctors I have managing my condition. It makes snap judgements based on little to no information and it wastes my time. The implication that you in your lack of experience know more than someone who deals with it every single day is the height of arrogance.
The need to offer advice is based on the assumption that being ill is abnormal. That it is a deviation that needs to be repaired. But sometimes illnesses just don’t respond no matter what you try, and sometimes managing symptoms is the best that can be done. This is hard to accept however for anyone who hasn’t personally experienced it however. We as people have a hard time conceptualizing of something like chronic pain or illness. We don’t like thinking that certain states, particularly unpleasant ones, might not end.
This applies to more than just illness. The inability to conceptualize problems not improving is part of why people vote against their interest in order to protect what they imagine to be future wealth.
Because people can’t conceptualize illness that doesn’t end, whether in death or a cure, there is this underlying assumption that chronically ill people are too blame for their continuing ill health. That it’s through some fault of our own –be it laziness, or having given up, or self-sabotage – that we aren’t getting better. Everyone else is getting better or going into remission, why can’t I? It must be I’m not trying hard enough.
But here’s the thing: if you convince yourself that my illness is the result of my own fault, then it becomes easier for you to ignore my accessibility needs. Because why should you make an effort if I’m not trying hard enough to get better.
It’s nothing more than victim blaming.
If you want to help: do my dishes, help me out when finances are tight, buy my art or support my blog, help me get home from medical tests, surgeries, and appointments, but leave the medical care to me and my doctors.