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Seeing a lot of posts lately talking about parents not telling their kids about their #autism or #ADHD diagnosis. The thing is, it’s not only with #neurodivergency, the trend is much wider.
I went to rheumatologist recently because of joint pain. Mentioned that to my mom, and she’s like “Oh, you’ve been a frequent visitor of a rheumatologist when you were kid because of heart murmurs and some other things, until we moved and changed the clinic”.
I’m over forty. I have an adult kid who suffers joint pain. I have been diagnosed with valve insufficiency just a few years ago, and knowing that I had heart murmurs could have helped with my diagnosis.
Why am I only being told about these things now? How much more medical information I don’t have about myself?
I know, many people are opposed to the idea of some universal health info system because of privacy issues and the fear that the state or corporations being able to use it against them. But I feel that it’s incorrect approach.
We need to develop mechanisms against misuse of our data, but there should be some way for us ourselves to be able to access the info about our health.
It’s so fucked up that there are numerous people around us - parents, school personal, doctors, nurses - who have the info about us, about our mental and physical health, that we have no idea about, and that is left for their(!) judgment what to give us and what not.
It strikes me as absolutely absurd when I see doctors or some “patient’s rights groups” saying sone info should not be shown to people because they can “misinterpret” it. WTH? As long as I am legally considered mentally capable to take my own decisions: to vote, to manage my property, etc - I should be entitled to any info on me, and should be given indisputable right to make my own decisions based on that. No one should take decisions concerning my health on my regard.
I don’t understand why people in general are ok with that. It scares me actually to see how widely acceptable that is in the society.
I asked my mom why she never told me that before, and she was like “oh, when we moved and changed the clinic, I didn’t mention to them your previous issues, so they just wrote you’re healthy, and didn’t bother us with more check-ups”
Just like that. If they write down I’m healthy, I am magically cured and don’t need those pesky checkups where they tell her I’m not perfect
She does something similar to herself: her vision has noticeably declined, but she refuses to admit that, it’s always just ‘bad light here’, and she refuses to go to check her eyesight. It seems, she is afraid to be ashamed if the checkup confirms not having 100/100 vision.
Is it just ableism? Is it some kind of magical thinking like “if I don’t admit it - it doesn’t exist?” Is it a fear of being told something is worse than it may seem?
I can’t truly understand that kind of behavior because I am the opposite. I need to know. Know everything related, know every detail, measure everything that can be measured, even knowing it won’t change the outcome. Maybe, to me, knowledge gives the illusion of control, while for her ignorance does.
Apparently it was a common enough thing in the past to withhold diagnoses & other critical health information from the patient on the judgement of relatives & caregivers. It was enough of a thing to be common trope in mid-20C media (cf the movie Dark Victory)
Given how big a shift there was when "informed consent" came along (within my lifetime) I have to think this was a common cultural theme. Which: 
