One of my pet peeves is an ableist microaggression that I've talked about before: offering unsolicited medical advice to chronically ill people, especially when you're not a medical professional. This is a problem for a few different reasons.
First, we chronically ill people have to be able to reach a place of acceptance. We have to face the fact that our lives have changed. We have to do our best to plan for a future where our illnesses continue to exist and may even worsen, as this is often the reality. We can't waste all our time and energy putting our lives on hold to search for a magical cure. (Unless we're also medical researchers.) When people are constantly throwing ideas at us for how to "fix" our chronic illnesses, it can be really hard to move on. I know that you're trying to offer us hope, to keep us from "giving up," but that's not how this works. That's not what we need. Acceptance is really the key.
Second, it assumes that we aren't already aware of the existing possibilities for treatments. It assumes that we don't know our own body, our own illnesses, that we don't have professionals we're working with on this, that if we just tried harder we could make this whole problem go away. And that's offensive and untrue. People with chronic illnesses tend to be quite familiar with the research, probably much more than you are. And the solutions you offer us? They're usually either things we've already tried or things that we're pretty darn sure are quackery. So give it a rest, all right?
Third, it assumes that people with chronic illnesses want further treatment or cures. While some of us do, many others don't. They're happy living in their bodies as they are. They consider their disabilities to be a part of the beautiful diversity of humanity. All they want is for other people to accept them so that they can move more easily through the world in the bodies they already have. And all disabled people need that, whether they want a cure or not. Focus on accessibility and reducing stigma, not on cures.
Fourth, when you're talking about treatments and cures, you're putting all the focus on our illnesses instead of on us as people. Yeah, sometimes we want to talk about our illnesses and disabilities. But it's more likely that, even if we mention them, we just want you to accept our comment and move on. There are other things going on in our lives, other things going on in your lives, that we want to talk about. So let's do that instead. And please, do not ever come up to someone who is disabled and ask for their personal medical information. That's just rude.
Now, with all that understood, I thought I'd talk a little more about what it's like as a disabled person keeping up with the medical research around my conditions. Because I do keep up. Like many people with chronic pain and fatigue, I'm very interested in further treatments or even the distant possibility of a cure. So I have Google Alerts on. I look through new studies when they come out. I appreciate the little glimpses I see of possible new developments. I don't get too excited about it, because I know that these are just the beginnings of understanding. My conditions are clearly complex, and it always takes a lot of time for medical science to fully and safely confirm any possible causes or any possible treatments. But the research shows me that someone is still out there working on this through legitimate means. While I currently have to plan for a future that includes chronic illness, I like the little reminders that, maybe someday, I'll be able to change those plans. I can't count on it, but there is always a little hope.
The conditions I have were not recognized for a long time in mainstream medical science. This is at least partly because they are female-predominant conditions, and medical sexism is a real and continuing problem. (I recommend Maya Dusenbery's Doing Harm for more information about that.) Much of the time, though the conditions are now medically recognized and scientifically validated, people still look at them as being a silly falsehood made up by hysterical middle-aged wives who hate their domestic lives and, otherwise, by mentally ill malingerers. There is a very real stigma, similar to the stigma around many mental illnesses. This may be partly because these conditions are often comorbid with mental illness, but regardless, the bigger issue continues to be our inability to take other people's pain seriously, especially the pain of those in marginalized groups.
Fibromyalgia is a condition that people have been aware of for centuries. At first, it was lumped in with various other conditions as "gout" and then "rheumatism." In 1906, it was recognized as its own condition, "fibrositis." It was not seriously researched until the 1970s. Chronic fatigue syndrome, which people still dismiss as "yuppie flu," has had many names throughout at least two hundred years of history, but began being researched more seriously after an outbreak--yes, CFS outbreaks do happen on the regular--in Nevada in the 1980s. Interstitial cystitis was first recognized in the 1830s as "tic doloureux of the bladder." Research continued piecemeal until the 1950s, when scientists discredited the condition as being mental. In the 1970s, people began fighting against that idea, and in the 2000s, IC started being taken seriously again. Postural orthostatic tachycardia syndrome was first called "irritable heart syndrome" in 1871 and was later lumped in with a number of conditions as "Da Costa syndrome" or "soldier's heart." In the 1980s, serious research began, and POTS was formally recognized as a dysautonomic condition in the 1990s, thanks to Mayo Clinic.
As you know, I have a few other related conditions, but those are the four most serious ones. Since research has finally gotten going, we've learned quite a lot! I am on many medications today that I don't know how I could live without, thanks to the research that has been done in the past. People understand my experience better thanks to new knowledge we've gained about the potential causes of these conditions. It only makes sense that current and future research could benefit me still more--and I promise, when it's time for that, my doctors and I will make those choices.
Sometimes, looking at the research studies in my Google Alerts feeds, I struggle to understand what the researchers are talking about. The science is just that detailed and that complex. When that happens, I turn to my mom, who's a cellular biologist with a Master's degree. She tends to understand it a little better than I do. Look at studies like the one about how brain glial cell activation is related to fibromyalgia or the one about how PBM cells react worse to stress tests in people with CFS or the one about how fibromyalgics somehow have fewer small nerve fibers? (How does that even make sense?)
Other times, I understand the studies well enough and spend a lot of time thinking about them, as in the case of a recent study that came up with the potentially huge discovery that the diabetes drug metformin helps with fibromyalgia or this update on four other potential fibromyalgia drugs.
Many times, human interest pieces come up in the Google Alerts feed, and I read the heartbreaking stories of other people struggling alongside me, like this eleven-year-old girl I still pray for sometimes who is suicidal due to extremely severe interstitial cystitis or like the teenage girl who developed CFS after getting injected with anthrax at a military hospital.
Always, I am grateful for all the people--scientists, activists, and more--who have fought and are continuing to fight for more research into these conditions. They are improving quality of life for myself and so many others, offering us a brighter future, and in doing so, they are also saving the lives of so many people. Like that girl, I was once suicidal about my conditions. I may still be again. But I've gotten through it once, and I don't think I could have without the treatments that have already been developed.
So if you want to help the chronically ill people you know, but can't figure out how to do it other than offering unsolicited advice, I recommend instead looking for ways to support further research and better accommodations. That's how you can really help. Fight the stigma. Show us acceptance. Don't shy away from our reality. If you'd like to donate money, look for advocate organizations and research hospitals like Mayo Clinic or Cleveland Clinic. I personally am a fan of the American Fibromyalgia Syndrome Association, the Solve ME/CFS Initiative, the American ME and CFS Society, the Interstitial Cystitis Network, and Dysautonomia International. You can also find current clinic trials at clinicaltrials.gov. (There's actually one about IC going on in my state right now!)
Thanks for reading, friends! I'll be back next week with my favorite character traits.
Images via Mattopaedia on Wikipedia, electronicfrontierfoundation on Flickr, Goodreads, and 767067 on Pxhere.
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