The first thing I was forced to learn very quickly after falling ill is that doctors are only human. It does not matter if they are specialists, general practitioners, or retired; human nature is bound to catch up with them at some stage. As we all know, human nature is synonymous with being flawed.
When you cling on to dear life under a medical team’s care, you expect them to be your superhero — to save you, fix your problem, and send you back to the life you know. But with myasthenia gravis, that is far from the case. A friend who is now a doctor informed me that when her university class discussed myasthenia gravis, the lecturer told them that it was likely none of the 600 students in the class would see a patient with MG in their clinical careers. This made me furious. As a student, I know what I would have done in that lecture after the lecturer had said that — nothing. I would not pay attention, and I would catch up on sleep, unaware of the future consequences.
If a rare disease patient is lucky, the doctor may have read up on their condition out of pure curiosity. I often wonder if my doctors slept through class while the professors presented myasthenia gravis symptoms in class. I began to ponder this when several doctors diagnosed me with everything from mental illness to asthma. None of them saw past my young age.
I was 19 and about to start building my own life path when I started falling very ill. I went from jogging 10 km, five times a week, to being unable to make my bed without running out of breath. It was terrifying. The worst part was that specialist after specialist told me it was all in my head. I started believing these highly educated specialists.
I felt guilty every time I unexpectedly collapsed on my way down the stairs because “it is all in my head.” I felt confused every time I slurred my words because “it is all in my head.” I felt ashamed when I slept away 18 hours of the day because “it is all in my head.”
I was on the verge of giving up when I went to see another specialist. After I recounted the same story and listed the symptoms I had told all the others about, this doctor took one look at me and said, “I think I know what it is.” She continued to do a clinical examination and single-fiber electromyography. Afterward, the words “myasthenia gravis” became a permanent part of my ever-expanding medical vocabulary. Believe it or not, I was relieved. Mostly because, deep down, I had known all along that it was not “all in my head.”
A rare disease diagnosis attempt can outline a doctor’s flaws or lack of knowledge immediately, or it can highlight their superpower. When you fall ill, you are forced to become dependent on your specialist’s knowledge and guidance. You need them to help you understand what is going on in your body since they study for such a long time to understand the human body in all its forms. The good doctors are few and far between, but they are there. With time you will learn to be your own superhero. Never stop fighting. Life is beautiful.
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