By Saidee Wynn in The Mighty.
Look, I get it. You see someone hurting and you want to help them. Maybe you were sick once but because you tried x-supplement or y-exercise and you now feel better – and that’s great. I’m happy for you, really, I am. And I appreciate the sentiment of wanting to help me to feel better. I understand you genuinely are trying to help. That’s why I think it’s important for you to understand why it’s not helpful and actually ends up hurting me instead.
I can’t speak for all spoonies, of course, but I am very active in multiple support groups for chronic illnesses. The following list is not only made up of my own personal experiences and feelings, but it also includes common complaints I’ve heard from multiple people in these groups.
1. I Know My Illnesses Better Than Most Doctors
I’m sure this isn’t the case with all chronic illnesses, but I have some rare (or rarely understood/diagnosed) illnesses. I often find myself talking to a doctor or nurse and having to explain to them how my illnesses work, what the symptoms are, what treatments are out there for it, etc. If I didn’t research my illnesses tirelessly, then I would be much worse off than I am now. In fact, I wouldn’t even have the diagnoses I have if it wasn’t for me researching and pushing to be evaluated.
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