Which sometimes feels like everything.
Because the reality is that I don't.
I don't really know much about medicine; although I've tried really hard to learn about it, the fact is that without actually going to medical school and getting a degree and doing a speciality in immunology there's a real, factual, hard ceiling to the knowledge I'm able to acquire and parse about ICL. I can learn a lot of big, long, Latinate words, but that doesn't mean that I can use them properly. I can search and search and research and read and study, but the that doesn't mean that I have the background or the experience to comprehend.
It's truly frustrating for me to read most basic levels of information (I use HIV/AIDS stuff, because anything that targets low CD4 counts is usually pretty relevant to ICL), realize that it's not in-depth enough to tell me what I actually need to know, and then get completely lost trying to interpret an article that's actually meant for clinical use.
It's hard because English is my language, it's actually my field of study, and words are my comfort zone. I feel like, if I can't figure this out I must not be trying hard enough, or studying hard enough, because the knowledge is out there, it's just not really accessible to me. It's not like they do a "Med 101 for Patients" class.
All it takes is one conversation with one doctor for me to realize just how out at sea I really am. That no matter how much I read, how much I try, how many lectures I watch on Youtube, or how many words or statistics or facts I memorize, I will never understand this. And I'll always be completely dependent on these people I don't even know to decide my life for me.
That's the rub, right?
How can I have a real conversation if I don't understand what we're talking about? Otherwise it's just somebody telling me what they want me to do. I can't actually argue my own opinion, my own values, my own priorities. Even worse, if I don't know enough about my own disease, then I can't be my own advocate in my own life. We talked in my appointment about some tests that I had turned down, actually because I had thought, misguidedly, that it was beneficial to turn them down. Except that I was unaware at the time of a significantly increased risk of more serious illnesses, because that wasn't something that I'd been told about or really had understood. There was also disagreement about the potential results of the test, which confused me more. More real knowledge allows me to advocate against that more strenuously. (Test was a lymph node biopsy, by the way. The serious illness is low-CD4 based cancers, like lymphoma. Part of the problem is that most basic level websites don't want to give cancer statistics to their HIV patients, and those aren't commonly known facts.)
The only solution I can think of is increasing medical literacy among patients who want it, like me. I need it, honestly. I have a rare disease that I need to be able to control myself. I need to know my risks so that I can advocate for myself, so that I can live a healthy lifestyle, and so I can make good treatment decisions (and know when to agree and disagree on decisions others make). But also just really clear communication and knowing that I'm trying, really hard. I just don't always understand, and I can't know what I don't know yet.
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