I Did Everything Right — And Yep, I'm Still Sick, Sherlock
Buckle up here. This is an angry article.
In a frustrating conversation the other night, I explained how my flare-up has been turned UP for months now, after about a year of relative "remission" (which I count as short flares, pain that wasn't too debilitating). Then the thing happened — the thing where someone says something like:
"Oh, I wonder what's causing it. Are you more stressed than usual?"
"Are you drinking more alcohol than usual?"
"I heard celery shots are really helpful for inflammation."
"You can't let things get to you so much."
"Have you tried meditation?"
As a quick aside: I've been taking great care of myself. I eat well, workout, reduce my vices, try to sleep, take CBD, manage my stress — all of that. But when I go into feeling crappy, the psuedo-doctors come out and everyone has an idea or suggestion or smug "well, I read" comment that is often reductive or straight-up disrespectful. Sometimes people generally want to help, but they often can help but to make it about them. Their knowledge. Their wisdom (which is never anything even remotely new or original or helpful).
If they want to help, they'll listen. They will listen. They will ask questions to get a full picture without inserting their own crap. It is literally that easy. Because you don't enter into big, nuanced, complex situations with dumb ideas rolling off your tongue, right?
And it happens literally every time unless someone I know (excluding people living with chronic illness, in which we instinctively know how to speak to one another and offer up ideas with respect) gets it and knows how to speak to me.
I know my body better than you ever will
It's tiring. Here's why: You're not a doctor. You don't need to diagnose me. You can just listen and let me posit my theories. Also, anything you have heard about celery or wine or meditation or sugar is — and I can't stress this enough — not new to me or anyone in my community.
Your suggestion implies that I'm clueless, that I have no idea what meditation or celery shots or yoga is (I think I get it, thanks), and if I am (or if someone is) clueless, we will tell you. Or, you know, we will tell our doctor or some sort of medical professional who...unsurprisinglu isn't you. You with your cursory to nonexistent understanding of, well, anything to do with my body.
At least use actual research
But if they do ask you for your opinion, maybe — and hear me out here — you can direct them to actual research-based resources (like websites like these or medical studies or pieces written by, ahem, doctors — gasp!) and avoid spouting something you saw on Instagram from some fitness guru who says celery shots helps her "inflammation" (which, by the way, may not be the same as chronic, lifelong inflammation from an actual disease). Okay? Okay.
So, yeah, this conversation bugged me (it bugs me every time). I could eliminate stress, eat in perfect alignment with an anti-inflammatory protocol that works for me, meditate, do yoga...and still have a disease. Yes, remission happens. Yes, diet, alcohol reduction, stress management, CBD, and medication are immensely helpful — but at the end of the day disease is a disease and you are not to blame. You can be doing everything right and it might just suck. Period.
So, when we (sick people) are living inside our painful bodies every single day, you can give us the benefit of the doubt that yes, we are TRYING. We really are trying. Thanks.
I am living with....