When I'm Respected as a Professional but Not as a Patient

I find myself in an unusual and confusing position.  I have a disability which involves chronic pain, fatigue, and limited mobility. I therefore spend a lot of my time as a “patient” at clinic appointments, having occasional inpatient stays, and spending what feels like hours sitting in hospital waiting rooms waiting for my name to be called.

However, I am also lucky enough to work part time as a specialist teacher assisting children with a wide range of complex disabilities. I give advice to schools, parents, and a wide range of medical specialists.  In this role, I’m a “professional.”

I marvel at how differently I am treated as a “patient” and as a “professional.”  As a patient, I can
talk coherently about my condition and the issues I face as a result of it.  I can discuss how I encounter chronic pain and debilitating fatigue, and I can ask for help in dealing with these in the most effective way for me. However, I find my voice is rarely truly listened to by the medical professionals I encounter. They may give me a cursory smile if I’m lucky – while making up their own minds about what to do next, without taking my views or experience into consideration.

As a professional, things are completely different. Teachers, therapists, parents and doctors all
listen carefully to my advice and want to learn from my professional experience. They are keen to discover more about my own life as a wheelchair user, and they highly value what I have to say. My words are heard, and they are heeded. The advice I give and the experiences I share are appreciated, and I am very lucky to be able to make a small but positive difference in the lives of children and their families living with complex conditions.

This is where my confusion lies.  As a professional, I am valued, my opinion matters and I can make a difference. As a patient, I feel devalued, my opinion is rarely listened to and certainly doesn’t seem to matter. I can’t make a difference in my own treatment and care, but I can when it comes to others –
some who have exactly the same diagnosis as me. It’s a frustrating place to be.

Here is my wish. That patients, those with chronic conditions and disabilities are valued by the
medical professionals they encounter. That together, patient and professional can work collaboratively
towards finding effective solutions so that every patient can receive the best care possible.  I believe true collaboration only works when both parties listen to each other, value each other’s opinion and experience, and work together. We are a long way from this at the moment, but we need to do better.

For now, I’ll continue down the confusing and often frustrating road of being a “professional patient” and see where it leads.

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