By Dawn Marie Gibson, as told to Kara Mayer Robinson
Living with ankylosing spondylitis (AS) as a person of color has a unique set of challenges.
As a Black woman with this disease, I’ve experienced them. I’ve also seen them in my work as a health advocate, writer, and patient engagement consultant.
African American women don’t look like the typical AS patient. The belief that we can’t or don’t get AS means delays in diagnosis, low social support, and lots of isolation and self-doubt.
Getting a Diagnosis
As a woman of color, getting a proper diagnosis can be a challenge. I was diagnosed in 2002, after about a year of illness. For other women of color, it may take even longer.
That’s because there’s a widespread misconception that AS, which is part of the spondyloarthritis (SpA) family, is found primarily in white men.
For generations, research, outreach, and support groups have focused on white men. Health advocates have helped raise awareness, but African American women haven’t been highlighted in these campaigns.
I’ve been told that it’s just science: Black women don’t get the disease. And when I mention that Black women aren’t sought out for research, I’ve been criticized for “bringing race into it.”
I’ve felt isolation and self-doubt. Early in my illness I wondered if I really had AS because everything I read said it was a very low chance, like maybe 5%. So I thought, how could I be in the 5%? Even my rheumatologist was shocked when scans confirmed the diagnosis.
I thought I was sick with something. But no published papers or information reflected my reality.
Unfortunately, that hasn’t changed much in 20 years. Many of my peers say their doctors tried to reclassify them as having lupus. If you’re a Black woman, they assume you have lupus, rheumatoid arthritis, or fibromyalgia.
Finding the Right Doctors
Even when you get a diagnosis, it doesn’t mean the next doctor will believe you or that you’ll get meaningful support.
I’ve had doctors and nurse practitioners of varying quality. Some haven’t been good but others have been excellent. The biggest barrier is resistance to acknowledging Black women get this disease.
I recently lost a long time doctor who always believed me and didn’t have that resistance. Now I’m starting over. I don’t know if I can replace her.
My Daily Life With AS
Fatigue, pain, and stiffness are my most prominent symptoms. For me, fatigue is the most challenging.
Fatigue is often misunderstood. It’s more than just being tired or worn out. Fatigue is a life disruptor. It has the potential to disanimate people like me.
It’s challenging to do everything I want and need to do. My pain levels change daily and throughout the day. It’s usually worse earlier in the day. I find it very hard to sit still for long periods of time.
I manage my symptoms with a combination of self-care, medications, and diet. I live a very structured life doing meal prep, scheduling rest, and limiting my commitments.
As a Black woman, the fact that fatigue is invisible is an extra challenge. If people don’t see it, they don’t necessarily believe it. Many people believe we’re lazy or trying to get away with something. But fatigue can make it a struggle to work and meet social obligations.
I’ve found meaningful support in AS communities.
I’m part of a private Facebook group that’s just for Black women with SpA. The women there are some of my closest friends. It makes a difference to be somewhere supportive, where I don’t have to prove myself.
I have some friends in the AS space who aren’t Black women. They fight for me. They support me. But not everyone is supportive.
There’s a widespread hostility to the idea that AS is happening to Black women, and that we’re experiencing a socially determined health disparity. We’re routinely shouted down and flamed out for insisting that something needs to be done for and about us.
Many people get defensive about the biased nature of research. In their minds, it must be legitimate and comprehensive because it’s science. They don’t want to admit that science comes from society. And that society isn’t equal.
There’s also a more subtle phenomenon of disrupting conversations about Black women with comments like, “It’s hard for everybody to get an AS diagnosis,” and “All women struggle to get care.”
What Needs to Change
Black women with AS experience the disease in a radically different way than most other patients.
The system isn’t designed to meet our needs and many people don’t believe us about being sick or the resistance we face. The default setting is that we should self-advocate and fight our way through this system, not that the system should rise to meet us.
I’d like to see this change by doing things like:
- Enrolling our women in registries and studies
- Genotyping and tissue banking more Black women
- Genotyping more families with a history of AS and known risk factors
- Using genealogy databases to uncover new diagnosis and treatment targets
- Revising guidelines to acknowledge most African Americans have some European ancestry and aren’t a distinct genetic population