Hi, I’m Troy McClure (Jess Grey). You may recognize me from such blockbusters as Invisible Disability and You Don’t Look Sick. And—damn, Daniel!—[I’m] back at it again with the white Vans. Because the universe has a funny way of smiling upon me—actually, I think it’s almost always smirking at me—I am in the middle of a nasty fibro flare just in time to write about fibromyalgia! Yay …?
So, before I delve any deeper, I want to be clear about this particular fact: fibromyalgia manifests differently for different people. I find that many folks who do not have experience with fibromyalgia are confused by this fact and that confusion contributes to the false narrative that folks living with fibro are faking it, creating a stigma that we have to fight past to get treatment and/or necessary accommodations. Think of a multi-circle Venn diagram: there is overlap in symptoms experienced by those with fibromyalgia but it overlaps in different places. I have several friends, family members, and acquaintances who have fibromyalgia and none of us experience the exact same set of symptoms or flare triggers. For example, my current fibro flare is being triggered by the weather but I know some folks that have no issues with weather triggers at all. This is to say that I am speaking to my experiences and, while those experiences may overlap with those of other folks with fibro, I am not and cannot speak for all people living with fibromyalgia.
For a long time, fibromyalgia was treated as an autoimmune disorder, which is why many folks with fibromyalgia have been, and still are, referred to rheumatologists for treatment. In recent years, it’s been increasingly accepted as a neurological disorder rather than an autoimmune disorder. So, rather than my body attacking itself—as it would with an autoimmune disorder—it’s better understood as a poorly wired house: the breakers are mislabeled and a lot of the circuits include different parts of the house that make no sense—the outlet in the upstairs bathroom is linked to the kitchen light and dining room outlets, while the light in the upstairs bathroom is linked to the laundry room in the basement.
That means that, not only are our pain receptors wired weird, so are a lot of other parts of our bodies. My most frequent symptoms include generalized and localized pain, IBS, fatigue, fibro fog, neuropathy in my hands, random and quite painful cramps or spasms—waking up at 3AM with a charley horse suuuuucks—allodynia, sleep disruptions, sensory overload, and increased pain at the sites of previous injury (and I’m super klutzy and I have broken a lot of bones in my life, so… blargh). And those are the frequent symptoms. I also live with clinical depression and both generalized and social anxiety disorders—those mental health disorders are often linked to fibromyalgia and, while the fibro may play a part, I’m pretty sure I would also experience those independent of fibromyalgia.
@hulkiepieI am the GOAT… wait, no. I just feel like a goat. Blaaeeaaaghhh. ##quarantinefeels ##stillinmypjs ##whyamilikethis ##chronicillness♬ original sound – milkbarnfarm
It me. Literally.
It’s very difficult to fight my way through all of those symptoms to get to a point of what our capitalist society would consider “productive.” It’s nearly impossible to get to that point when I’m in a major flare which can be triggered by stress or by something as unpredictable as the weather. Often, the fight through those symptoms is so exhausting that I can’t be “productive” at all, let alone be as “productive” as I’d like. Even now, trying to get these words onto the page is a challenge: I’m in pain, I’m in sensory overload and everything is distracting, and the cognitive dysfunction that is fibro fog is fucking with my ability to choose the right words or hang onto the thought I wanted to express to you. I am rapidly approaching my fork limit.
@hulkiepieChronically Ill Enby Diary: Entry No. 36527 ##chronicillness ##spoonie ##nonbinary ##lgbtqplus ##disabledandqueer♬ original sound – enolav
If I try to force myself to be the most “productive” I can, I will end up in worse health for longer. I have to be very deliberate about when I decide to push myself because I will pay for it and be totally out of commission for a long, hot minute.
Imagine, then, fighting through all of that to try to show up and be present just to be met with one of the many shitty things some people say about fibromyalgia:
“It’s all in your head.”—Well, yes. That’s the thing about neurological disorders. But also? We’re not making this up. It is real and it really impedes our ability to live our lives the way we would like to live them.
“You don’t look sick.”—You don’t look like an asshole but here we are. What does “sick” even look like?
“It must be nice to stay in bed all day.”—A lot of y’all can’t even handle being voluntarily quasi-quarantined in your homes; imagine being involuntarily quasi-quarantined in your bed. IT SUCKS.
“But you could do [x] yesterday; why can’t you do [x] today?”—Well, I wasn’t experiencing a flare in my symptoms yesterday. Do you usually perform as well when you have a cold or a stomach bug as you do when you’re healthy? Alright then. Take a seat.
“It’s not that bad. At least it’s not cancer; that’s bad.”—Just because what I experience doesn’t seem as bad to you as whatever you imagine to be the worst case scenario, doesn’t mean that it isn’t painful or that it doesn’t mess with my ability to live and enjoy life. Additionally, my saying that I’m sick and in pain doesn’t invalidate the experiences of other people with other illnesses. You claiming that you’re hungry doesn’t invalidate the fact that there are people who experience chronic hunger and malnourishment, does it? Okay, then.
“’Chronic pain’ is just code for ‘drug seeking.’”—First of all, yes. I am seeking drugs. I am seeking legitimate prescriptions that will help me safely and effectively manage the symptoms I experience. I seek drugs to help regulate my thyroid. I seek prescriptions to help me manage my, sometimes crippling, anxiety and depression. And, yes, I seek drugs to help me manage my pain so that I might participate in life a bit more fully.
Second: can we please find a more accurate and sensitive way to talk about the experiences of folks who are seeking prescription drugs to use in an unsafe way? Because, often, those folks are finding ways to treat issues that have not been diagnosed or properly treated and get addicted in the process. This is a failing of our society and our healthcare system: the lack of access to proper mental health and/or specialized medical care has a lot to do with this issue. Have some fucking compassion.
Look, what I’m saying is: life with fibromyalgia is hard. It is hard living in these bodies. It is hard living with the cognitive and psychological symptoms of fibromyalgia. It is hard living in a society that dismisses our experiences, invalidates the hard work put in to getting to a point where we can show up, and calls us lazy, liars, and attention seekers. And it is incredibly hard living with the fact that we can and do lose people we love in our lives because either they do not believe us or they simply cannot handle us and our experiences. We know—better than anyone—that is not easy to live with someone who has fibromyalgia but it hurts so very much to lose loved ones because they do not have the capacity to stay beside us through our struggle (no shade, you cannot pour from an empty cup and if you don’t have the capacity, you just don’t—some folks are struggling hard in their own lives and just don’t have the bandwidth to spare; it still hurts though).
As with so many other things, it is important to believe people when they tell us their experiences—even if it is something you don’t see or experience. This is true of minorities speaking out about the discrimination they face. This is true of survivors sharing their experiences and naming those that assaulted and/or abused them. And this is true of people living with invisible illnesses and disabilities. Empathy and compassion are key in building a world that is safer, kinder, more just, and more accessible for everyone.
Take care. Stay as safe and well as you can. Educate yourself about the experiences of those around you who are struggling with their health—mental and physical. And as always: