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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.
@olena my mum only found out when she was in her 50s that she'd had a metal plate put in her head as part of an operation when she was six. Her parents didn't tell her to 'protect her' 
never mind that it would have been useful information to have...
Yes I would say having an MRI ripping that violently off & killing her would be important information
@hannu_ikonen @olena yeah, I think she found out because she was going to be referred for an MRI but they were like 'wait, it says in your file you have a metal plate' 
Honestly, lucky it was documented somewhere.
That is my nightmare scenario: EMR records break down & parents not telling kids.
@hannu_ikonen @alicemcalicepants @olena
Or keeping the info from them "for their own good"
(Seriously, how many subdivisions in Hell are populated by perpetrators of "for their own good" rationalizations?)
@cavyherd @hannu_ikonen @olena that, or 'they've been through enough'. Like, they'll need to know eventually, better to handle it now than have it be a huge shock down the line.
@alicemcalicepants @hannu_ikonen @olena
I mean, aside from the whole, "I have a right to know what's going on with me, & nobody has a right to withhold that information 'for my own good'" 
Denial of consent: it's a hell of a drug.
@cavyherd @hannu_ikonen @olena that too! The more I think about it, the more fucked-up I realise it is.