Past doctor visits made me feel more like a specimen than a person
Patient care has come a long way since I was diagnosed in the '80s
About 11 years ago, I visited Voyager Therapeutics. The company was, and still is, working to develop a gene therapy for my disease, Friedreich’s ataxia (FA).
My dad joined me on that visit, and we were overwhelmed by the care, respect, and kind curiosity we were shown. It was a stark contrast to the emotional distance we experienced when I was diagnosed in 1981 at the age of 19, as well as during early doctor visits for supervision (not treatment) of my FA.
I deliberately refrain from saying “treatment” because, until February 2023, there was no approved treatment for FA. The best doctors could do was manage the symptoms and keep patients informed about ongoing clinical trials. If you were fortunate, you were eligible for a trial.
Feeling scared and vulnerable
In the years following my diagnosis, doctors often marched students into the room to observe my symptoms, such as no reflexes, ataxic gait, and slurred speech. Sometimes the physician would ask me if this was OK, but not always.
I remember always giving consent, because how else would these young doctors, who were older than I was at the time, learn about FA? However, consent or not, I remember feeling scared and vulnerable in the exam room as comments about me flew around, often including medical terms I didn’t understand. No one asked me about my symptoms; my doctor explained them to the doctors in training. During these rounds, I felt like a silent, dehumanized FA specimen.
Even though Mom and Dad were in the room, I felt very alone. I was being examined and deliberated over; they weren’t. Of course, their hearts were breaking, too, but in a different way. Today, I wonder if I understood the increased vulnerability I faced by giving that consent. At 19, I was the one to provide it, not my parents.
Current American Medical Association ethical guidelines state that a doctor must obtain the patient’s permission to bring students or other observers into the exam room. I like to think doctors always do so these days.
It’s no wonder that my dad and I felt acknowledged by the Voyager team’s curiosity. They asked about my symptoms but concentrated on the challenges and joys of our daily lives. I felt like a human being receiving empathy for the struggles FA imposed, not a specimen.
Voyager was the first of several biopharma companies I visited on behalf of my FA patient organization. At each one, I was treated as a person in need of the company’s research.
Today, I’ve been seeing a brilliant neurologist for more than 20 years. Under his care, I have always felt like a person. I hope everyone can find that.
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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