By Dawn Marie Gibson as Kara Mayer Robinson
As people of color, people with ankylosing spondylitis (AS) face a unique set of challenges.
As a black woman with this disorder, I have experienced it. I also see them in my work as a health advocate, author, and patient engagement consultant.
African-American women don’t look like typical AS patients. The belief that we can’t or won’t get AS means delayed diagnosis, low social support, and a lot of isolation and self-doubt.
get a diagnosis
As a woman of color, getting the right diagnosis can be challenging. I was diagnosed in 2002, after about a year of illness. For other women of color, it may take longer.
This is because of a common misconception that AS belongs to the family of spondyloarthritis (SpA) and is predominantly seen in white males.
For generations, research, outreach, and support groups have focused on white men. Health advocates helped raise awareness, but African American women were not featured prominently at these events.
I was told it was just science: black women don’t get this disease. I have been criticized for “taking race into account” when I mentioned that black women were not included in the study.
I feel lonely and self doubting. Early in my illness, I wondered if I actually had AS because everything I read said it was a very low chance, like 5%. So I thought, how could I be in the 5%? Even my rheumatologist was shocked when the scan confirmed the diagnosis.
I believe I am sick. But no published papers or information reflect my reality.
Unfortunately, that hasn’t changed much in 20 years. Many of my peers say their doctors tried to reclassify them as lupus. If you’re a black woman, they think you have lupus or rheumatoid arthritis or fibromyalgia.
find the right doctor
Even if you get a diagnosis, it doesn’t mean the next doctor will believe you or that you will receive meaningful support.
I have doctors and nurse practitioners of varying quality. Some are not very good, but some are already excellent. The biggest hurdle is the denial of recognition that black women have the disease.
I recently lost a doctor who believed in me for a long time 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, aches and stiffness are my most prominent symptoms. For me, fatigue is the most challenging.
Fatigue is often misunderstood. It’s not just being tired or exhausted. Fatigue is a life destroyer. It has the potential to deactivate someone like me.
It is challenging to do everything I want and need to do. My pain level varies from day to day and throughout the day. It’s usually worse earlier in the day. I find it difficult to sit still for long periods of time.
I manage my symptoms with a combination of self-care, medication, and diet. I live a very organized life, cooking meals, scheduling breaks and limiting my commitments.
As a black woman, the fact that fatigue is invisible is an added challenge. If people haven’t seen it, they won’t necessarily believe it. Many people think we are lazy or trying to get away with something. But fatigue can make work and social obligations difficult.
Get support
I found meaningful support in the AS community.
I am a member of a private Facebook group specifically for black women with SpA. The women there are my closest friends. Having support somewhere makes a difference and I don’t have to prove myself.
I have friends in the AS field who are not black women. They fight for me. They support me. But not everyone supports it.
There is general refutation of the idea that AS is happening to black women, and that we are experiencing socially determined disparities in health. We often get yelled at and pissed off for insisting that something needs to be done for us and for us.
Many people are defensive about the biased nature of the research. In their view, it has to be legitimate and comprehensive because it is science. They don’t want to admit that science comes from society. That society is unequal.
There’s also a more subtle phenomenon of disrupting the conversation about black women with comments like “everyone has a hard time getting an AS diagnosis” and “all women struggle to get care.”
what needs to be changed
Black women with AS experience the disease in a very different way than most other patients.
The system was not designed to meet our needs, and many people don’t believe that we are sick or the resistance we face. The default is that we should assert ourselves and fight our way through the system, not that the system should rise up to meet us.
I want to see this change by doing:
- Get our women enrolled and in research
- Genotyping and Tissue Banking More Black Women
- Genotyping more families with a history of AS and known risk factors
- Discovering new diagnostic and therapeutic targets using genealogy databases
- Revise guidelines to recognize that most African Americans have some European ancestry and are not a unique genetic group
