I have hidden disabilities, and I talk about them. It’s a little thing I do towards normalizing a conversation that is too-often shamed into silence. When I share on social media, though, there’s something I always brace myself for: the onslaught of “cures.”
I know you mean well. I know you care about me and feeling helpless is a hard place to be. But if you want to suggest any treatment ideas, please follow these ground rules.
1. Don’t send me articles you’ve found online.
If it’s an actual legitimate article about my fibromyalgia or osteoarthritis, I’ve probably already found it and read it, or read something similar. I’m a thorough self-advocate and am always active in finding ways to improve my life. Many of the articles online are fabricated click-bait. Those of us with fibromyalgia are especially targeted by this overinflated fluff or outright lies about cures; it’s because our illness continues to lack credibility, and the manufacturers of lies think if we’re naïve enough to believe we’ve got this “made up” disease, then we’ll believe some article about curing it with a mold kit or a boiled donkey hair tonic. Whatever the validity of the article you send me, if I’m being honest, I have to say it hurts my feelings; it’s like you believe that my devastating illness is actually so minor I can do one little thing to fix it; or that I’m not working hard trying to help myself and find any and all information on my own; or both … and I’m choosing to keep suffering. I know you don’t mean it, but that’s how it can feel.
2. Or if you really *must* send me that article….
Try not to make it out like the end-all, be-all cure (because there is no cure, and if there were, it’d be on CNN *and* Ellen, not www.tryingtosoundlikearealnewswebsite.com), and give me a little credit for being the self-advocate that I am. You might say, “Have you seen this yet?” which acknowledges that I’m doing my own research, or you could say, “What are your thoughts on this?” which puts me in the position as expert on my own illness. Asking me one of these questions makes it a conversation, not an imposition, and it’s also non-promissory.
3. Don’t do it for you.
Oftentimes, when people send me flippant, one-off, “why don’t you just….?” solutions it can feel like A) You’re trying to check “help Christina” (or worse, “fix Christina”) of your to-do list for the day so you can feel like a better person; or B) You want to send over a solution so that my problem will go away and then you don’t have to think about it, worry about it, or empathically feel it anymore—as if you want it gone more for your sake than for mine. My illness and chronic pain are my problem, not yours.
4. Be mindful of my means.
OK, let’s say you still really want to send me a treatment, because you do really care and it’s actually a really cool idea that probably can help. The problem is, I might not be able to do it. It might be A) too expensive, B) not available in my local area, C) outside my comfort zone, or D) illegal. I’ve had all kinds of solutions presented to me, from sensory deprivation float therapy, to CBD oil, to just plain old swimming. For each of these, there are reasons they’re not possible. Some people have even gotten pushy with their ideas, and I just want to say I heard you the first time. Consider that we might even be triggered by a recommendation. I often get very frustrated and depressed when I’m reminded I’m too freaking lower-middle-class to try some things that could very well change my life for the better.
5. If it works for you, that doesn’t mean it’s going to work for me.
So maybe you’ve got an awful chronic condition, too. We are all different, and even if I have a same condition as you, your go-to coping mechanism isn’t necessarily going to work for me, so please don’t impose it upon me. For example, you might not like being alone when you’re depressed, but please don’t show up on my doorstep when you find out I’m sad. I guarantee I haven’t had a shower and I’m likely farty from whatever comfort food I found in the back of my cabinet. Being near me would be bad for us both.
Basically, I ask that you try not to minimize what I’m going through, that you don’t pressure me, and that you’re mindful of my own efforts and means. That being said, I do recognize any time someone is being caring and concerned, even if you’re not perfect at it; no matter what, keep being you, with your heart and support. I see it, and thank you.