Sexism And AS: No, AS Is Not A "Man's Disease"
"I have ankylosing spondylitis," I say to the doctor we're out to dinner with. He's a friend of a friend, and he's doing work with Doctors Without Borders. I'm immediately impressed by his background and feel comfortable chatting with him.
"Luckily, because you're a woman, you probably won't get as sick as a man might," he retorts, with a smile that says, I'm trying to be helpful. "It's usually seen as a man's disease," he continues. As if that's any comfort at all. As if that negates 10 years of limited mobility, daily pain, ongoing vision problems, constant gut inflammation, bone-deep fatigue, forced career changes, and medicine-induced conditions. As if I have anything else to compare my pain to.
His language was careless
I can't blame him for being misinformed by years' worth of wrong teachings and lack of clinical information — but I can blame him for his careless language and reductionist attitude. Even if AS were worse in men — and it's not — how would his statement be helpful? Also, when you're a doctor, I think you need to think critically about the intersection of race, gender, class, and culture and illness.
So let's get right into this. No more preamble. No justification or qualifying my post. The things I've heard about ankylosing spondylitis, as a woman, are sometimes rooted in sexism.
Women and AS: Our pain is real
If you're not sure what "sexism" means in this case, it's the reductionist erasure, silencing, belittling or oversimplifying of women's pains, feelings, reactions, or experience of illness. It's being told that I'm exaggerating my pain or being "too sensitive," with the either inferred or direct implication that women have a lower threshold. That we're weaker. That we complain. That we're overly emotional. That we want attention.
Society assigns behaviors to women — against the patriarchal values of stoicism, strength, and pragmatism — because we decided that "womanly" vulnerability and sensitivity were bad things. Men — just like women or nonbinary folks — can complain, can be weak, can be emotional, and can want attention. And men, like women, are capable of vulnerability and sensitivity. And women, like men, are stoic, strong, and pragmatic. None of these characteristics are inherently gendered. They are all things we decided to assign to the genders because people like neat boxes.
I've met women AS patients who adopted a "suck it up" attitude ("the manly way") and men who cried to me at support groups ("the womanly way"). I respect and honor both — and I think it's important that we stop intersecting gender and illness unnecessarily.
Obviously, there may be a biological component when it comes to the way diseases are expressed in a body, and that is proving to be the case for women and men — but there are some issues of oversimplification at hand. Here's what you should know.
1. Men do not have AS "worse" than women.
Every single AS patient is different. You may suffer from fatigue and uveitis, while someone else suffers with neck and lower back issues, while another person deals with hip and gastro issues. This disease is so unpredictable there's no way of comparing. Not to mention the fact that pain is experienced differently.
Oh, and the idea that way, way more men have it? False. This new review proves that AS is super common in women, too.
2. There's a lack of research around women and AS.
According to this article: "Part of the problem is that research has focused heavily on men, but that’s starting to change. Some recent studies have included more women, but there’s not enough data yet to reach firm conclusions about sex differences in AS."
3. It takes longer to diagnose women.
This study shows that it takes women about 3 years longer to receive a diagnosis. Why? It could be that many women's symptoms (especially pain2) are written off as hysterical or overly sensitive, or that less research is done on women.
According to the BBC, the problem is probably stemming from gender bias and lack of information: "Both anecdotes and academic research point to a disturbing trend: in the medical industry, there’s a long history of dismissing women’s pain. More difficult to determine is whether this is due to gender bias, a lack of medical research on women, or actual differences between how the sexes interpret pain."3
As for AS, some women may have less radiographic (or visible) damage, but that doesn't mean they're not sick or in pain. This means they may have non-radiographic axial spondyloarthritis (nr-AxSpA).
In the end, we need to advocate for ourselves, and for other women — to be heard, appreciated, seen, and treated with respect.
Do you use the word disability to describe your AS?