When you are sick, people are lovely and try to be helpful. It is difficult to understand an illness that can be managed, but will never go away, but people still want to be helpful, so they will let you me of everything they’ve head has worked, whether they heard it from grandma, someone else in line at the grocery, on Facebook, or some dude on the internet. Some of the things I regularly hear include:
Have you tried aromatherapy?
Have you tried essential oils?
You should go gluten free, you would feel so much better.
You should do yoga or tai chi. Thousands of years of Indo-Asian medicine can’t be wrong.
Doctors say sitting is the new smoking, you should exercise and you’ll feel better.
You should wish on an amethyst at the dark of the moon.
You should sleep more.
You should sleep less.
You should do acupuncture.
Acupuncturists are charlatans, go to a chiropractor.
Chiropractors are charlatans, go to an acupuncturist.
Both chiropractors and acupuncturists are charlatans, go see a physical therapist.
Have you rubbed kale on it?
Okay, I added that last one, because it kind of captures the ridiculousness of things. Folks don’t realize that when they offer remedies for a sore throat, the sufferer will only be dealing with that soreness for a few days, so I only have to hear about possible remedies for those three days. When you have a chronic illness, there’s no end of the illness, though it may wax and wane. This means there’s no end of people offering remedies, and those remedies are usually based on very little medical research. Because I get so much of it, I can become weary and it is difficult to offer enthusiasm and effusive thanks after a few months, much less years, of this.
But the person offering help does not know that they are the forty-seventh person to tell me this thing, or that it contradicts current medical research, or that it is something I am already doing, or that they are contradicting themselves by offering the opposite of the remedy they offered last week.
I try to remember to be grateful that my people care enough to want me to feel better, and I do actually file their recommendations away. My first line of defense against this illness includes evidence-based medicine (I’m a research librarian, after all) and my specialists’ recommendations. I have an entire team of specialists that keep me in working order (like I’m an older model temperamental machine, ha). On days like today, bad pain days where I’m in the middle of a flare, ready to rip my skin off and begging for relief, I apply my doctor-prescribed medicines, and then I go to The List. I’ve got cassia and cinnamon essential oils mixed in with my cocoa butter lotion. I drink fennel tea, I put turmeric on whatever I’ll eat for dinner, I’ve got a chunk of amethyst in my pocket, I’m working on the ujjayi yoga breathing that is supposed to stimulate the vagus nerve which will reduce inflammation. I’ll try anything twice, and even if there’s a placebo effect–hell, that’s better than no effect. If we can trick my brain into thinking I’m better than I am, I’m in.
So, here we go. Let’s talk about chronic and invisible illness. I’m going to tell the low-down dirty truth about my experience as a chronically ill woman in a society that expects the sick person to either get well or die, not to linger in the liminal space between for a few decades, making trouble. Come with me, I’ll tell my stories and you can tell me yours, we can find where systems let folks like me (and you, if you’re a spoonie) fall through the cracks or deliberately exclude us. And we’ll figure out a way to make sure that “invisible illness” doesn’t mean “invisible person.”
I and my Irritable Bowel Plushie welcome you. I hope you are feeling well today, for whatever value of “good” your body will allow.