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.
Hi Max,
You are not alone! Myself and my adult children share many of the difficulties you mention. In fact just a few months ago my son was referred over something and same issue: had to book it himself online and there were many choices of different locations, doctors and dates and times - none of anywhere near where we live. I drive but generally only to familiar places and never through busy cities - but eventually we picked the least worrying location and booked it. However my son was so anxious about the whole thing and as the appointment got nearer and nearer he got to the dreaded day the worse it got. And in the middle of the night before the day of the appointment he concluded he just could not make himself go to the appointment. So (with some guilt as we felt awful about cancelling it last minute like that) we cancelled it first thing that morning. My youngest son has Selective mutism too - but that’s mainly been at school and then college. Any medical or dental appointment is very difficult for me and my youngest. My eldest in contrast has had to have many medical appointments and he seems to have gradually learned to cope quite well them now (at least that’s the impression I get as we don’t live near to him so I don’t see him as much as we’d like sadly). But he has definitely experienced doctors with no understanding of his needs as an autistic patient - as have I. And that can be really upsetting.
Anyway, I’m really sorry you struggle so much with this too - I really empathise. It’s just so stressful. My GP surgery asked me to go in for routine checks/ screenings recently but I can’t face that at the moment.
So I’m sending best wishes and solidarity.
Urgh I am so sorry you're having similar experiences. I've worked in hospitals most of my adult life, it's not the hospitals that bother me as such, it's the sensory stuff and the misunderstandings. I don't do touch or close proximity to people. Hospital appointments require both. *Shudder*
I hope you manage to get to your routine tests. I've gotta get a blood test next week. That'll be interesting enough and that's only at the GP surgery. At least we aren't alone in this experience