How Chronic Illness Taught Me to Be a Fearless Medical Activist to Get What I Need
My health journey has taught me several indispensable life lessons. One of the most important is the right and duty each of us has to advocate for ourselves. Decisions over medical testing, medical diagnoses, whether and how to pursue certain treatments, or the likelihood of the success of certain treatments are ours — the patients’ and caregivers’ — to make. They can not and should not be delegated to anyone, including medical professionals.
Their role is strictly to advise and recommend and to respect the sovereignty we have over our health. We must be our own activists and go as far as we need to go to get the solutions we deserve.
In my experience, far too many people with chronic illnesses worship at the altar of the white coat and stethoscope. They reflexively treat physicians like priests whose medical proclamations carry divine inspiration and can thus never be questioned. The doctor’s office is an odd space in which servility and subordination on the patient’s part is implied. Conformity and penitence tend to be the rule and capitulation to the superiority of the physician’s wisdom is expected. However, the ugly truth is that when it comes to the diagnosis and treatment of “idiopathic” illnesses many physicians have no clue what they’re doing.
I once had a neurologist diagnose me with Charcot-Marie-Tooth based on his interpretation of genetic test results. When I looked at the test results myself, it was pretty clear that the test confirmed the exact opposite, that I did not have Charcot-Marie-Tooth. At an office visit I challenged the neurologist on his conclusion. He was dismissive and chuckled rudely, as if I was a child. I told him I would be seeking a second opinion. He told me I would be wasting my time because anyone could see that he was right. As it turns out, I sought opinions from several other neurologists, including one from the National Institutes of Health (NIH), and all agreed that the first neurologist was absolutely wrong. Had I not asserted myself, I would have believed I had a disease I didn’t have.
It is incumbent upon anyone suffering from a medical condition to challenge medical authority if they are not being treated the way they should be. After being diagnosed with a mitochondrial disorder — yet another wrong diagnosis — I asked a neurologist to help me procure an experimental drug to possibly improve my condition. My neurologist told me that it would be a waste of time because the drug’s manufacturer wasn’t going to allow it. Not taking her word for it, I took it upon myself to contact a senior official at the drug company and I was able to strike a deal — he would allow me expanded access use of the drug if I gave him a sample of my DNA. He was apparently interested in it for scientific reasons and I had no problem having a sample sent to him. I was overjoyed.
After informing my neurologist of my agreement with the company she agreed to file the necessary paperwork with the U.S. Food and Drug Administration (FDA). The process should have taken no more than a month, but the neurologist began to drag her feet, ignoring my emails and phone calls. When she did return them, she was rude and mean, obviously annoyed that I was “rushing” her. Her obstinate behavior continued for months as my health continued to deteriorate. I was hesitant to push her too much because I knew it would be difficult to find another physician to help me. Starting all over from square one was frightening but I was tired of waiting. I decided I needed a new approach, one based on love — love for myself — and not fear.
My new approach was aggressive. I asked several family members to continuously call and email her. I then called my state legislators to call her office and push her to file the application, which they did. I even called my representative in the U.S. House of Representatives and explained my predicament and someone from his office did, in fact, call the doctor. Finally, I emailed several senior administrators at the hospital my neurologist worked at.
Needless to say, my neurologist was none too happy about my efforts. She had been reprimanded by her superiors at the hospital and beyond upset at everything I had been doing. I didn’t care how upset she was. The only thing I cared about was that drug. She had been told by her superiors to get the paperwork done and she did so, very quickly I might add. I got the drug.
Although I did get the drug, the true lesson was that I was willing to do anything it took to improve my health and no amount of medical degrees, titles, credentials or years of service was going to stop me. You shouldn’t let it stop you, either. We never have to apologize for loving ourselves.
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