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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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1 Reply
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Oh gosh. Kudos to you for remaining kind and polite. I don’t think I would have been able to. I do my best, but regularly feel like you gotta knock the Know-It-All vibes out of some doctors.
During one of my admissions last year, a resident told me, “Sherry, I think you need to understand your condition better. Your stomach pains and nausea are caused by constipation, which is caused by the Fentanyl. Your solution cannot be more Fentanyl. You need to take the oral laxatives.”
Somehow, I found the strength to tell him off. “I know this!” I said. “I’ve been through two rounds of this. But I feel like I’m going to throw up. That puts me at risk for electrolyte imbalance, and we don’t have an IV plug in me that’ll last. I’m not taking anything unless we have a backup plan for the electrolytes. You don’t know my case that well. I suggest you speak to my neuro and pain specialist before you proceed with anything — they’ve seen how bad I can get.”
He looked at me like he couldn’t believe how well I knew my body.
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