Recently, the Tumblr blog Chronic Femmes–which positioned itself as a resource for chronically ill femmes–was the subject of controversy after one of its moderators answered a reader question by saying that it was important for people with chronic pain, chronic health issues, or mental health issues to not “[appropriate] disabled” when identifying themselves as chronically ill (along with some other problematic statements, such as one’s disability status only counts if that person can receive or currently receives public assistance because of their disability). Many Tumblr users with chronic pain and health issues took exception to this–although the moderator who wrote the response, Kendall, quickly apologized for her mistake, the incident itself demonstrates a common misconception about chronic pain and illnesses that feature chronic pain as a symptom–that neither are “really” disabling or debilitating.
If you don’t have chronic pain or have never experienced chronic illness, it can be hard to understand just how all-consuming pain–and related symptoms like overwhelming fatigue–can be. Writer Christine Miserandino penned a metaphorical essay, “The Spoon Theory,” in an attempt to explain to nondisabled people what it’s like to live with chronic pain and chronic illness; the essay has struck a chord with chronically ill people online, and “spoons” has become shorthand among many ill folks who find the term useful. But there are some situations where the spoon metaphor falls short–at least for me–and I’ve struggled before with communicating exactly how disabling chronic pain can be, and what it feels like, in talking to both nondisabled people and other people with disabilities.
Lots of people–especially nondisabled people–seem to not understand that chronic pain is ongoing, that it can actually be disabling, and, above all, that it can be beyond their understanding. I have heard people say that chronic pain, especially in young people, is “not a disability disability” and that people who claim to have chronic pain should just take some Advil and shut up (though not in those exact words).
I have been asked, “When you say you literally cannot get out of bed some days because of pain, what do you mean?” as if I can simply defer to a flow chart of some kind to make my experience easier for abled people to comprehend.
Once, when I described to a friend the experience of what breathing during an anaphylactic allergic reaction feels like (spoiler alert: it is painful, like a bonfire in your chest), I was faced with the following response: “Oh, yeah, I had TERRIBLE heartburn last week that lasted for a couple of hours. It sucked.” I murmured some sympathetic noises and tried not to get too angry.
A family friend once responded to my mentioning my chronic pain offhand by literally talking over me, increasingly loudly, that “Positive thinking works wonders!” I responded that chronic pain was “more complex than that,” but she would not stop repeating her wisdom nugget about positive thinking, as if it were an incantation that would cast some sort of demon out of me. All it did was make me leave the room.
I cannot tell you how many times I’ve heard variations on the phrase, “You seem better!” from people who should know better than to say such a thing; but they don’t, because they do not see me when I am bedridden from back pain, shoulder pain, leg pain, and neck pain all at once. Yes, I want to say, I “seem” better, because you’ve caught me on one of my really good days. They don’t know what I’m hiding, and the sad part is that most of them don’t want to know unless they can jump in with “expertise” of some sort.
Most of the time, I have okay pain days. My okay days are as difficult to describe as my bad pain days; how do you describe something that is debilitating and keeps you from doing all of the things that nondisabled people have built up as what you “should” be able to do, but that is not as bad as it could be? The pain still gnaws at me on my okay days; one difference between an okay day and a bad day is that on a bad day, I am confined to bed and usually unable to take a shower or get fully dressed. I suppose that the gnawing/consuming distinction is crucial: on okay days, my pain gnaws at different areas of my body on-and-off, but on bad days, it consumes my entire body, rendering it one giant pile of too-hot skin, tightly knotted muscles, and an overall feeling like I’ve been working out all day even though I haven’t gone near a gym in years. On my bad days, the classic pain scale used in emergency rooms everywhere seems gloriously simplistic and sometimes a little insulting–the faces I make on bad days have more in common with some of the figures in Francis Bacon‘s paintings than with a rudimentary drawing of a face.
Chronic pain also overtakes your brain in a particularly insidious way. Not only can it become the only thing you can think about on bad days–really, you try “thinking through” not just one of the above “bad day” symptoms, but all of them at the same time–but it also has cognitive effects. Some people in pain call this “brain fog”; I tend to compare it to trying to read a dense theoretical text when you usually read short, plain-language articles. Brain fog feels like someone’s suddenly switched out your short articles for theoretical, abstract articles that are also 70 pages long, on a subject that you know nothing about, and you just cannot understand any of it–even though a lot depends on whether you understand this wildly theoretical article.
People who advocate “just pushing through” chronic pain very often have little to no idea of what they’re talking about, or what they’re advocating. There has been research indicating (thanks, science!) that chronic pain changes the brain in ways that medicine has only begun to explore. Nor is it an accident that many chronic pain conditions are skewed so heavily when it comes to gender that women outnumber men when it comes to diagnosis; if “just push through” is the ideal for men that leans quite a bit on the idea of masculine toughness, then “just push through” for women is about ignoring your own needs more effectively so that you can fulfill society’s prescribed role for women: taking care of other people and being a “good” partner/wife, daughter, mother, worker, and consumer. Taking it easy when your pain and fatigue flares up is a threat to certain aspects of your femininity; hell, chronic pain itself is a threat to some aspects of proper femininity, as that one Lyrica ad that features a matronly white woman hosting a neighborhood party so weirdly demonstrates.
Certainly, not all chronic pain is disabling. But if a disability is, in part, a condition that limits one or more major life activities, well, chronic pain can and does do that. Dealing with chronic pain–whether by itself or as part of a condition such as CFS/ME, fibromyalgia, rheumatoid arthritis, complex regional pain syndrome–is not as simple as just pushing through, taking some Advil, or thinking the pain away with happy thoughts. That’s part of what makes it so difficult to deal with if you have it; its relative lack of visibility, too, makes it difficult for people who don’t have it to really get how it could be disabling. Theorist Elaine Scarry wrote in 1988 that “To have pain is to have certainty. To hear about pain is to have doubt.” Despite medical and technological advances–and despite a continuing social justice emphasis on the power of empathy–this, unfortunately, continues to be very true for those with chronic pain.