Hey, Rheumatologists: Do Better

I’m in a somewhat unique position as an ankylosing spondylitis patient. Not only am I a patient, but I’m also a chronic illness advocate and a medical writer.

These realities all somehow converged over the years; being a patient probably inspired my being a medical writer in some way. But because I report on health, often writing about chronic illness and spondyloarthropathies, I have to speak to a lot of doctors.

Not only do I speak to my own doctor and rheumatologist about my own Ankylosing Spondylitis, but I speak to top rheumatologists around the country about how they treat their patients with inflammatory diseases like ankylosing spondylitis.

I've talked to some excellent doctors, yes, but I've also spoken to rheumatologists who share outdated information. Some of the problems that I see include rheumatologists saying that ankylosing spondylitis affects men more than women and that women have more mild cases of this disease. Recent research suggests otherwise.  

Is it honestly too much to expect them to know this?

I’ve also been told that BIPOC don’t experience the disease as people with a European background do. I think we know that this isn’t the reality, although there are some differences in how certain ethnic backgrounds experienced the disease. For example, it's now known that Black people are more likely to develop severe ankylosing spondylitis (AS).

Is it also too much to expect them to know this?

To have professionals tell you that your experience is less awful because you are a woman or because you are a person of color is unfair and reductive. Not to mention, it’s flat-out incorrect.

I’ve also spoken to doctors who disregard any conversation around diet, stress management, or alternative medication or therapies. Every time I encounter this sort of rheumatologist, I feel utterly disappointed, and I worry about the patients that they will see and will ultimately go on to disappoint.

The best rheumatologist I’ve spoken to — and they are out there — are the ones who listen, actively. They are the ones who want to get to know their patient's experiences, and who modify the way they treat patients based on what they’ve learned along the way.

They keep up with the literature, and they keep up with language that makes people feel included and seen. They don't reduce a human being to a number or a statistic in a textbook.

The best rheumatologists I’ve spoken to are open-minded about cannabidiol and diet and movement and meditation. Obviously, I’m not asking doctors to forgo medication. I’m asking them to integrate holistic and alternative treatments into a traditional medical plan. I am asking them to talk more openly and learn more about how alternative therapies can help people.

Speaking to a rheumatologist who suggested stress management and certain kinds of daily exercise was such a rare experience for me, honestly. My own first two rheumatologists over the years never did. She made it clear that patients can take an active role in their disease management beyond just taking medication. She made it clear that her patient want this sort of information — and so she shows up with it.

Writing about health, including a disease that I have, means that I’m pretty cognizant of how doctors take care of their patients. I believe we all deserve respect and to be seen as whole people. I believe that doctors should routinely read and acknowledge updated information.

I believe in patient-centered care.