Fibromyalgia Awareness Day: On Masking Pain

Every time that pitch-time rolls around at Sweatpants & Coffee and I see a topic like this, I almost always want to write about it. There’s a whole thought process that goes something like: “I experience _______ (fibromyalgia and other chronic illnesses, mental illnesses, Autism, etc.) and I have some thoughts and experiences to share. I wouldn’t necessarily call them ‘insights’ but maybe it’s enough to write about it so other people know they’re not alone.” Then, I sit down at my computer and stare at a blank page, utterly unsure of what to say or even if I experience whatever it is “enough” to even have the right to write about it.A friend of mine recently shared a Tumblr post with me that made me feel …perceived. Essentially, the post boiled down to the fact that imposter syndrome and masking are linked; the reason the I feel like I’m tricking people all the time is because I am but not in the way that I think I am. Every day, to varying degrees around different people, I am masking—masking my Autism, my ADHD, my severe depression, my anxiety disorders, my PTSD, and my pain. And even with the people I have managed to take of all the other masks in front of, I am almost always masking my pain.I can cope with some folks seeing my AuDHD brain at work, in large part because those folks are also little neurodivergent weirdos and we can be little neurodivergent weirdos together. I can cope with some folks seeing (okay, fine. Unless you’re one of a very few, including my therapist, seeing) my mental illnesses by making jokes because, as that Tumblr post said, “90% of my personality turns out to be trauma masquerading as humor in a trenchcoat.” But it is exceedingly rare that anyone but me knows how much physical pain I am experiencing at any given moment.I mask the extent of my pain because I get tired of complaining. I know part of that is because I was socialized as a girl and the unspoken rule was, at least in my heavily female-dominated family, women don’t complain unless it’s on behalf of someone else—Mom-friend override, who? I don’t know her—though, even that is more about being tired of being seen to be grousing. I am tired of complaining. It is exhausting to constantly acknowledge and confront this thing that, for the most part, just will not change. Don’t get me wrong, I’m not doing nothing to feel better: I’m taking my medications as prescribed, I see specialists, I’m going to physical therapy, I use an app daily that is helping me pace myself to combat fatigue, I’m in therapy, and, yes, I’m even using turmeric, too… because why the hell not?! I’m doing things. It’s just that there’s no cure. There is nothing that will leave me pain-free and well-rested and …not chronically ill. This is simply a thing that I have to live with; it’s like complaining about being alive, though—to be fair—I definitely do that, too, sometimes.

Photo by cottonbro studio

But the chief reason? Trust. There are a lot of people who just straight up don’t believe me and other people with fibromyalgia: “there’s no way someone can be in that much pain all the time, they must be making it up for attention or to seek medication because they’re an addict or because they have no ambition and don’t want to work or…” I’ve heard may variations on those themes. From strangers on the internet, from doctors, and from loved ones. The fact that pain, like every other circumstance of life, is variable plays into their distrust, as does the fact that fibromyalgia manifests differently in different people, which is true of all syndromes and disorders by definition: “A syndrome is a constellation of signs and symptoms that occur together and covary over time. A disorder is also a collection of signs and symptoms, but it has known associated features that are presumed to be related.”Mostly, though, it freaks a lot of people out when I’m completely honest all the time about how much pain I’m in and how fatigued I am. And those people, however well-meaning, struggle to just let me just live. Everything becomes a battle, from not letting me carry a load of laundry across the house to not wanting me to go do a thing that I love doing because I will hurt a little bit more tomorrow. They don’t trust me to decide for myself what I can and can’t do; they don’t trust me to know my limits; and they don’t trust me to my own risk-benefit analyses around the things I need to do and things I want to do. There are tons of “reasons” why those well-meaning, misguided neurotypical and able-bodied people don’t trust neurodivergent and disabled people to decide what they can and can’t do but all of those “reasons” boil down to ableism. I mask the extent of my pain because it is how I survive and navigate through an ableist world, the ableism of people around me. It is how I walk the narrow, wobbly, inexpertly-secured tightrope between attempting to protect my existence through acknowledgement of my disability and attempting to leave room to reach out and snatch what joy and fulfillment I can.And, y’all, believe me when I say that I know how absurd a thing this is to say: I have imposter syndrome about my pain. I have trouble believing that I can hurt this much all the time and I start second guessing myself: “maybe this is just what living feels like and I’m just whining;” “I don’t think I’m exaggerating but …maybe I’m exaggerating?!”; “maybe I’m just lazy…” Yeah, I can shit talk myself with the best of ‘em. And I’m almost 100% sure that this imposter syndrome is the result of both the ableism I’ve internalized from the world around me and having been masking so long that I’ve gaslit myself into disbelieving my own experience. So, you know, that’s a joy.

Do I contradict myself?Very well, then, I contradict myself.(I am large, I contain multitudes.)      —Walt Whitman, Song of Myself

So, yeah. The reason that I feel like I’m tricking everyone is because I am. I am tricking you. I’m tricking you into believing that I’m better than I am or, more accurately, that I feel better than I do. I’m tricking you into not taking from me the autonomy to decide what I can do, when I can do it, what price I’m willing to pay to do it, and where my limits are. (There’s a Bane joke in here somewhere about how “no one cared [about my judgment of my abilities] until I put on the mask” but I can’t make it sufficiently pithy.) And in the course of tricking you, I’m tricking me into distrusting my experiences of living in this body and this mind—so much so that I struggle to believe that my fibromyalgia is “bad enough” to even be able to speak on the matter.I’m not much one for New Year’s resolutions and such but I think Fibromyalgia Awareness Day resolutions (boy, doesn’t that just roll of the tongue?!) are in order. I resolve to drop the mask I wear to cover my pain—even just a little bit. And I hope those not living with fibromyalgia and other chronic pain disorders will resolve to work on trusting us, hearing us, believing us. Because the more you trust me, the more I can trust you to be someone I don’t have to wear the mask for, someone I don’t feel like I have to trick.