In a lengthy interview published on The Cut this week, writer/comedian/provocateur Lena Dunham spoke about her struggles with physical pain from both a connective-tissue disease and fibromyalgia, telling writer Allison P. Davis that she wants to be “the face” of the latter.
As a young writer who also has fibromyalgia—although I am not as advanced in my career or as well connected as Dunham is—let me take you through why this is a bad idea. There are approximately 10 million people in the United States with fibromyalgia; the condition is lifelong, and tends to be characterized by widespread soft tissue/muscle pain, chronic fatigue, bowel problems, and other symptoms that can vary from person to person.
Fibromyalgia has also been the subject of considerable controversy within the medical field and in the public eye. There are plenty of people who do not “believe” that it exists, or that people with it are really suffering from some sort of psychological or conversion disorder instead of actual pain. However, as someone who’s had the condition for more than a decade, I can confirm that it is, in fact, real—and painful.
Lena Dunham should not be “the face of fibromyalgia” for several reasons, the first of which is that she has fucked up on race—and other issues–many times, but has appeared not to learn anything from said fucking up. Dunham has been criticized by feminists, women of color, and others for a fairly straightforward reason: she fucks up, over and over, when it comes to various issues, but does not seem interested in changing her behavior when she is called on it.
This is where her wish to be the “face” of fibromyalgia becomes a cause for concern. Throughout the rest of the profile, it becomes clear that Dunham is not the average fibromyalgia patient; she maintains residences in both Los Angeles and Connecticut (the latter on her parents’ property), she can afford a $1,600 “tourmaline-infused heating pad” for her pain, she has two more books coming out, and she has a career in the entertainment industry.
I am not trying to knock Dunham for her privilege here, but her claim that she wants to be “the face of fibromyalgia” rings hollow since the vast majority of people with fibromyalgia do not have the name recognition, career success, or access to medical treatments (both conventional and unconventional, such as the “status” $1,600 heating pad) that Dunham has.
The general public already tends to view fibromyalgia as a health condition that only well-off white women have; Dunham, who seems to obliviously step in it over and over when it comes to race, might soon do the same for chronic pain. This is a problem; if she gets to be representative of women with fibromyalgia in the public eye, what chance do the rest of us have to get our pain taken seriously?
Of course, I am not saying that Dunham’s pain—from endometriosis, fibromyalgia, and a connective-tissue disease—is not real or worthy of treatment or concern. It is, but so is the pain of millions of people with the same diseases who do not have the opportunities that she has. I’ve seen enough crowdfunding sites made by people with the same health problems that she deals with to know that a famous woman with considerable cultural, social, and economic capital does not—and cannot–represent all fibromyalgia or chronic illness patients.
Slate writer Shannon Palus praised Davis’s profile, saying that it “takes female pain seriously.” However, as someone with fibromyalgia who shares some similarities with Dunham, what I got from this well-written profile was quite different: Lena Dunham takes her own pain seriously. Fibromyalgia, and the other conditions that Dunham has, affect millions of people; having one “face” of fibro, and having that face be a famous person’s, is unrealistic and potentially dangerous. But I’m just one face of fibromyalgia—I am not famous–and there are many, many more.