How I Fight Against Medical Impostor Syndrome As an AxSpA Patient

The chairs in the rheumatology waiting room are cushier than most. I walk towards one with hesitation – feeling out of place, like a burglar in a stranger’s house – despite having an Axial Spondyloarthritis (AxSpA) diagnosis for more than 8 years.

The others in the waiting room are at least 30 years my senior. I see their lined faces and imagine them thinking, “Why is she here?”

The sudden twinge of pain in my lower back answers their question.

What is medical impostor syndrome?

Even though I can feel the symptoms of AxSpA every day, I still question their legitimacy from time to time. You may have heard of “impostor syndrome” in work and academic contexts, but did you know it can also be experienced by people with chronic illnesses?

While typical impostor syndrome entails second-guessing one’s competencies, medical impostor syndrome refers to second-guessing the validity of one’s symptoms. If you find yourself asking...

• Are my symptoms bad enough to visit the doctor?
• Am I just being dramatic?
• Do I really deserve these accommodations and care?

Then you may be experiencing medical impostor syndrome, too.

The struggle for validation

It’s no wonder we feel this way. Those of us with chronic illnesses are afraid of being seen as “faking it” or “exaggerating” to receive “special privileges.” Even medical professionals can perpetuate medical impostor syndrome.

Before I was officially diagnosed, several doctors discounted my symptoms and chalked my pain up to sports injuries. One doctor even told me that AxSpA was more common in men and it was unlikely that I had it (spoiler alert: I did.) How am I supposed to not question myself when even the doctors questioned me?

When I was finally diagnosed with AxSpA, I felt sadness, but also immense relief - finally, some validation that my concerns were warranted all along. Yet, medical impostor syndrome still creeps up every now and then.

When AxSpA treatment works (and the doubt returns)

As I sit in the waiting room keenly aware of my young and healthy appearance, I find myself thinking, “Do I really need to be here? Do I really deserve care?” These thoughts grow louder the better my treatment is working.

When my pain is well-managed and I’m able to do everyday tasks with ease, I feel like an impostor most of all. But the truth is that even when things are going well, I still have a real, lifelong chronic illness that deserves acknowledgement and care.

How to quiet the self-doubt

Over the years, I’ve found strategies to help me quiet down my medical impostor syndrome. When the self-doubt encroaches, I imagine one of my best friends telling me that they’re experiencing my exact symptoms: sharp back pain, difficulty walking, crushing fatigue.

I imagine what I would say to them. Would I say, “Stop feeling sorry for yourself. You’re overreacting.”? Of course not! I would validate their experiences and emotions, and support them in seeking medical care.

I also find it helpful to remind myself that nobody would choose to sit in a hospital or clinic waiting room for hours just for fun. If someone is in so much pain that they’re willing to go through the hassle of accessing care just to get some relief, their symptoms are absolutely “bad enough.”

If you can relate to the struggle of medical impostor syndrome, remember that no one else is living in your body and no one else can feel what you’re feeling.

We can’t force the world to “believe” us, but we can continue to fight against our own self-doubt, advocate tirelessly, and make things a little easier for the next person.