On valuing the voices of women with chronic pain

Recently, a fairly large and well-known media outlet posted a lengthy piece of journalism on women and chronic pain. It was incredibly well-received, sparking discussion across the internet from a wide variety of people, and it was heavily circulated. At last, a piece really probing into the problem of women and chronic pain, and exposing the epidemic of pain among women so that it would no longer remain hidden! Lo verily, this is exactly what journalism is for, to delve into social issues and drive conversations about them, to bring things to light and to get people to think about social structures and the need for reform.

This article was written by a man.

This is important.

You see, let me let you in on a little secret, because it is apparently a secret: Women have been talking about chronic pain for a very long time. Esteemed women in journalism, even! Women have been doing features on chronic pain when publications are gracious enough to sully their pages with ladywords, and not only that, they’ve been doing extensive research into the subject, examining how and why chronic pain is undertreated, how to address the situation, how to reform the medical system to create a better way to manage chronic pain. Because this country has a huge epidemic of chronic pain that’s not being adequately resolved, and there’s a big reason for it.

Chronic pain disproportionately affects women. A lot of studies have explored why this might be, but pain seems to affect people gendered as woman differently than those who are gendered as men — there may be some biology involved here, but also possibly some socialisation. Women are more likely to experience chronic pain on the whole, just as they are also more likely to experience conditions associated with chronic pain, like fibromyalgia. Women, in other words, are set up to experience more pain than men, overall, and that matters.

Because health conditions that affect women more than men tend to be ignored, and they get less research attention and fewer research dollars. Much as people joke that if men could get pregnant, treatment of pregnant people would improve radically overnight, any condition affecting men is taken very seriously. Men can and do get chronic pain and there’s a substantial percentage of men dealing with pain, often associated with occupational injury, but it’s an issue strongly slanted towards women.

Existing methods of managing chronic pain are really terrible. Many of the options used today are over 100 years old, and few new products are being developed. People are criticised for needing to use ‘addictive’ pain medication without being offered practical alternatives, and various technologies used to manage pain, like TENS units, aren’t effective on all patients. Having chronic pain sucks just on its face, but also because it’s really, really difficult to find effective treatment. Many patients experience significant degradation in their quality of life, and it’s compounded by intersectional issues that complicate the experience of pain.

Because of all of these issues, women tend to care rather a lot about chronic pain. Women with pain have written about and explored it quite extensively, as have women with an interest in disability rights and women’s health. Women in research have taken it on in labs, hospitals, and other environments to understand the pathways of pain and learn more about how to identify and block pain. And, yes, journalists have taken on chronic pain — in fact, at almost the exact same time that the article referenced above came out, another article on the closely related chronic fatigue syndrome in women also came out, except that this time it was written by a woman, and it flew largely under the radar. More properly known as systemic exertion intolerance disorder, the condition disproportionately affects women, and, surprise surprise, it’s heavily marginalised and dismissed with language like ‘yuppie flu’ and suggestions that patients are just faking it for attention. Obviously, a lengthy feature on the subject in a major publication should just be ignored.

The voices of women living with chronic pain are not valued. We are reminded of this when they are accused of being big fat fakers. We are reminded of this when the research community refuses to dig in on pain and develop better treatment options. We are reminded of this when pain medication is stigmatised. We are reminded of this when women who experience pain are treated like garbage. And we are reminded of this when everyone makes a huge production every time a man discusses chronic pain and ignores the women who have been going before; when a man writes a story heavily rooted in the work of women without giving them even so much as a nod, taking the credit and attention but none of the heat for writing about a stigmatised social issue.

Bylines matter. It’s one reason the Economist doesn’t have them, because it doesn’t want to bias readers — though in the process, it also makes it impossible to attempt to read diversely, as you have no idea who’s writing what. Knowing who produced a work of journalism or artwork or anything else is important, because it provides political and social context. I prefer generally to consume works produced by minorities, regardless as to whether they’re about minority experiences, because I like to support their work. I don’t need to read men writing about an issue that primarily affects women, stealing the work of women and getting heaped in lavish attention for it.

And neither should anyone else. It’s exhausting to see women journos out in the field doing the research and slogging through poor pay and rough conditions and frustrating situations, only to have the dudebros of journalism swoop in and gank their work. It needs to stop, and the way to stop it is by pushing back on things like this. If you see something written by a dude, hunt around — you might be surprised by who wrote it first.

Image: After the Rain 2, Jose Santiago Tan, Flickr