Disability and Determination is a weekly newsletter about my experience navigating life with a rare disability. If you like this post, feel free to give a click on the ❤️ symbol below. This will help me get discovered by others on Substack. To be notified of future posts, drop your email in the field at the bottom and click the Subscribe button. If you’d like to further contribute, I also offer a paid subscription option (that includes extra monthly content), or you can Buy Me a Coffee ☕ I’m glad you’re here ☺️
I read something that really resonated with me recently:
In sharing this news with this beloved community, I’d like to ask a few things: No pity, no advice, no unsolicited medical information, no dietary recommendations, no alternative cures from your great-grandmother’s guru. I appreciate the good intentions behind these impulses, but please know that (unfortunately) I have a lot of experience when it comes to cancer, and I’m choosing the right path for me.
This came from the wonderful Substack of
:
If you don’t know Suleika’s journey with cancer and life, I highly recommend reading her book, Between Two Kingdoms. It’s a book that touched and shook me to the core. Her Substack is just as beautifully written too.
Even though I am not going through anything nearly as tough as Suleika is, she put into words something I’ve never quite been able to.
As a disabled person, you often get a lot of unsolicited medical advice, tips, “why don’t you try this”es? I think anyone dealing with any kind of chronic illness or health issue does. Most of the time, it’s well-intentioned. People just want to try give you a solution or help you problem solve. Example of a non-helpful tip though? “Why don’t you wake up with a positive attitude” as a way of “fixing” my disability.
But the thing is, most (if not all) of us have been dealing with what we’re dealing with for a long time—our whole lives even. I’ve been dealing with my disability since I was 2. We have the most experience in our individual situations and chances are, we’ve probably already tried a lot of the things people suggest to us. But even if we haven’t, we know our bodies the best (even better than doctors oftentimes), and we know what we need to do or don’t need to do. And if we don’t, it’s still not really anyone’s place to tell us otherwise. Giving us toxic positivity-isms like “there’s nothing you can’t do if you put your mind to it” (which is also ableist), or “think positive” or any other of the same positivity milieu, also tend to make us feel worse instead of better.
Suggesting diet tips or changes in eating habits to people with disabilities or chronic illness can often be insulting too, no matter how well-intentioned. It insinuates that whatever we’re dealing with can just be removed simply by cutting out dairy or gluten or whatever other thing is currently deemed unhealthy. It also can make the disabled or chronically ill person feel like their issues are being minimized or like their disability/illness is their fault because they aren’t eating the “right” things. There was a huge rise in this kind of stuff once COVID hit. Sorry everyone who thinks they’re a doctor now, getting Vitamin D, eating right, and exercising isn’t going to prevent you from getting COVID. COVID doesn’t give a sh*t how “healthy” and “fit” you are. When people go “maybe you just need to do this”, it has a subtext that we couldn’t have possibly thought of that ourselves. Again, even though it may be well-intentioned, it can be infantilizing (which is something you deal with a lot already as a disabled person).
Speaking solely for myself, I have tried cutting out literally everything at one point or another. I’ve tried every form of exercise I’m physically able to do. On this osteoporosis journey where nothing seems to be working and I’m not even sure if any of the available medications will help me long-term, I’ve been continuing to try it all. Supplements, diet, exercise, etc. I’ve researched things until my eyes burned from staring at the screen. Some days, I just don’t have it in me to “look on the bright side” or find the positive. Some days, I just need to feel like crap and then move forward.
As our friends, family, coworkers, etc., we appreciate your desire to help with whatever we’re dealing with physically. We know you care and just want to help us figure it out or feel better. Maybe something worked for you and you’re excited and want us to try it too. All we ask is that you remember that we’ve been on this boat the longest and we have the most intimate knowledge of what’s going to keep it afloat or potentially put a big hole in the bottom where we start taking on water. You may think you know better, but ask yourself if it’s helpful to bring that to the table before you do. Listening and acknowledging can go so far. If we want any suggestions or advice, we will definitely ask for it. Like Suleika said so well, we’re choosing the right path for us. Please trust that.
❤️☮️
Well done! I mean...What SHE said, lol! Yes.
Well said! I have had my rare condition/since birth, so your comments really struck a chord with me.