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How do you explain SMA-related needs to a doctor and advocate for yourself?
Recently, I had an incident where I had to speak up during a procedure. Long story short, the method that works on all the other patients doesn’t work on me. I knew this, but I felt awkward and nervous to tell the doctor how to do his job. It’s obviously not my place, but it’s also my body.
After some back and forth (thanks to my stubbornness in not backing down), I was finally heard, and the procedure ended well. I remained kind and polite when speaking out to earn his respect. I wanted him to know we’re a team, and together, I will get the best care. Nevertheless, it’s sometimes hard to speak up. I don’t want to come across as a rude know-it-all. I also sometimes struggle with having people take me seriously.
How do you explain SMA-related needs to a doctor?
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