Dealing With the Lack of Knowledge of AS in Healthcare

Before I was diagnosed with ankylosis spondylitis, I’d never heard of it.

I spent a lot of time researching my condition, then explaining to friends and family what AS is and how it affects me. But what happens when the people who have never heard of ankylosing spondylitis are our healthcare professionals?

Seeing a physiotherapist

I saw a physio when I was first diagnosed. When I sat down, the first thing the physio did was apologize because they weren’t qualified to treat me. They could unintentionally worsen my condition because I had ankylosing spondylitis. They did a few basic checks, gave me some crutches, and promised a referral to a rheumatology physio. While this was frustrating, I was reassured that the physio understood my condition, and their limits in trying to treat me.

The second physiotherapist

My next physio appointment was 4 months later. The physio was looking through my notes when I arrived. They asked the reason for my appointment, and I explained my recent diagnosis of ankylosing spondylitis and my gradually worsening symptoms. They asked what medications I was taking, and when I said I had recently started biologics but hadn’t yet noticed an improvement, they asked what biologics were. I told them that I was taking an immunosuppressant injection that was a TNF inhibitor and the brand name. I explained again that I had ankylosing spondylitis and they nodded along.

Soon, we started with exercises. At one point the physio started to pummel my hip. They noticed me wincing, frowned and said, “the pain shouldn’t be more than a 4.” To which I replied, “Well it is, because I have arthritis.” “Oh,” the physio looked surprised and took a much gentler approach for the rest of the appointment. When we sat down to go through the exercises, they asked me, “how are you doing emotionally? It must be very difficult, you’re very young to have rheumatoid arthritis.” I was so tired of the whole experience at this point, that I didn’t bother to correct them. I said I was doing fine. They clearly had no idea what ankylosing spondylitis was. I left feeling deflated.

Occupational therapy

Recently, I had an appointment with an occupational therapist. The first question was, “So, how long have you had problems with your ankles for?” It took me a moment to realise that they were actually referring to ankylosing spondylitis. I told them I’d never had problems with my ankles, and explained what AS is. I gave in depth answers throughout the appointment about how AS affects me, but I could tell they didn’t fully understand AS and it’s impact.

Self advocating

Since the appointment, I have researched guidelines from the Health and Care Professionals Council, which is a regulatory body in the UK. They publish standards of proficiency for professionals including occupational therapists, in which they make clear that they must operate within the scope of their practice. This is defined as "areas of your profession in which you have the knowledge, skills and experience to practice lawfully, safely and effectively."¹ I’ve asked for a reassessment with a different occupational therapist based on the previous one acting outside their scope of practice.

People with AS may already feel that people around us can’t truly understand what we’re experiencing, and a lack of understanding in medical spaces can push us further into feelings of loneliness and isolation.

Healthcare professionals are meant to not only understand our condition, but also be able to help us. We need to feel that we can trust in them. Advocating for yourself can be really difficult to get used to as a patient, and we shouldn’t have to, but it is necessary. We deserve knowledgable healthcare professionals who understand AS and its effects, and who can help us.

Have you ever had a similar experience where your healthcare professional hadn’t heard of ankylosing spondylitis? How did you handle it?