Published on 12, July, 2020
How do you do it?
By the time I get to any appointment I'm beyond the point of being reasonable. I can't think, can't remember what I needed to say, become situationally mute, and fail to explain what's going on so 9/10 times I leave without being understood and have a meltdown at home after. That's assuming I managed to leave the house in the first place
I forget that I've experienced things before and classically don't recall how long I've had the problem. I looked up my medical record the other day and found I've actually been complaining about menstruation problems for my whole adult life, not just the last few years.
Now I have to go have a scan. I get a letter, have to open a website and log in, choose from 6 places 2 have a different booking process, all are miles away and just that makes me meltdown. The last medical apt I made myself go to ended with me headbanging against the hospital wall and the medic wrote a stinking letter to my GP telling her off for not mentioning autism in the referral.
What suggestions do you have for getting to, staying at and communicating at medical appointments?
I have no family/friends to take me
I got discharged from community support because I couldn't drive to meet him (eye roll)
I stopped taking notes into apts because a GP was nasty about it and claimed I was making things up to get attention. (he also said 'people who work don't have mental health issues')
Bottom line, I don't trust doctors or professionals after a life time of being ignored because of how I communicate.
Same. Tbh I deal with it by spending hours researching medical conditions, reading studies, and then sourcing treatments to try, either OTC, from UK online doctor services, or from overseas pharmacies for stuff that would require prescription in the UK. It's not ideal but I find it easier and more effective than communicating with a GP, and I have managed to solve my menstruation issues that way. I have the same problem as you in that I go to the GP and end up leaving without anything being addressed because I've failed to communicate the issue fully in the few minutes available. Notes only work if they will agree to read them, which most won't.
I had a time when I was doing a lot of research about a particular health thing and to be honest it became a real problem for me. I became quite obsessive about the research and just ended up more worried and confused. I have now ‘banned myself’ from researching medical stuff online!
I have a rule of no doing it in the middle of the night. But otherwise it's proved useful.
I used to edit medical journal articles for a living (I quit because the company was awful to work for) and find reading that stuff quite interesting. You do have to set a time limit though.
Yes - it’s very much a personal thing as to whether it’s helpful or unhelpful. For me it ultimately did me more harm than good (although I learnt a lot). I think doing your own medical research online should probably come with a health warning!
True. It's just crazy to me that it's easier to learn a whole new field than it is to communicate with the NHS.
I just meant broadly. You have the science background to be able to understand research papers and the experience with medical articles. There are very very few people who are that well equipped to do that, even if you didn't actually study medicine.
I don't actually have a medical background. I have a science degree, but haven't formally studied biology since I was 16. I started out editing physics papers but they started giving me medical stuff due to understaffing and I realised it's not that difficult to understand.