Published on 12, July, 2020
Good evening,
I'm looking for advice on how to survive a visit to the doctor. I don't like to be touched and have real problems when it comes to verbalising my needs and fears when talking to people, especially doctors whom I try and avoid as much as possible. My old GP has left the practice (not that I went and saw her much) and now I am faced with meeting a new doctor. I have severe anxiety and my mental health is not great at the moment.
I always find it difficult to verbalise, articulate and express my wishes when it comes to appointments such as these. I'm unable to make phone calls and so a few weeks ago I wrote a letter to my GP (my old one). I wrote to her about 6 months ago detailing what the problem was (she was very understanding, knowing my dislike of touch and prescribed me what she could on the information I had detailed). Fast forward and my problem has worsened, so a couple of weeks ago I wrote to her again saying this and that I felt I had no option but to be seen.
Today I received a text from the medical centre with an appointment. I know nothing about the new doctor and I'm not sure if she will understand how I communicate and what a massive deal this is for me, and I mean massive! I thought I would write a brief list of my concerns about the examination and how I need information explained to me. Does that sound reasonable? I fear greatly that she will not be nice and open to my needs.
Just going out is a major problem at the moment. I had to attend a psychiatrist appointment about a month ago and my anxiety was immense, I did get through it (and psychiatrist are used to anxious people) but when I came out I think I went into shock. I just stood outside shaking for about 30 minutes and then when I finally got home just went into shutdown. I haven't the words for how bad my anxiety is.
This post doesn't really express all my fears but even here on the forum I can't articulate everything that is going on inside my head. It's a week and a half away and as every day passes I know that my anxiety will heighten. What if I burn out before then and just can't even keep the appointment?
Any advice would be really welcomed.
Thanks.
Yep! Big medical phobe here recognises all of that. And a lot of GPs just don't get it. But some will.
You could e-mail the practice ahead of time and tell them, what you just told us. I'd ask to see whoever at the practice knows most about autism, either by training or personal experience.
You might also want to investigate whether an advocate might be able to come with you and help the communication process.
I did manage to get one appointment recently with an advocate and a GP who did have personal experience of the issues. It made a big difference. Sadly, she is no longer at the practice. It doesn't help when the personnel keep changing, does it? It means we have to through that confidence building all over again.
Thanks Dawn. It does help just to know that you’re not the only one…although I wouldn’t want anyone else to endure the anxieties etc! Both you and Singsong have given me some great advice. It’s a very small practice and none of the staff have any clue about autism, sad . I don’t think our local NHS can keep GP’s at the moment, from what I’ve learnt today, so they’re all locums. Our practice doesn’t even have an email address! I shall look into the suggestion of an advocate but will also use some of Singsong advice. Thanks for replying!
Yes, it's been a relief to know other people experience this. Mental Health blamed me when CBT didn't work. For this, it won't. The problem is in the neurology, not the psychology and the only answer lies in the co-operation and understanding of those treating us. If we get that, and know we are going to get that, the anxiety starts to climb down.
It's so wrong that we have to fight anew everytime for that understanding just at the moment we are most vulnerable and need someone to fight for us. The very fact of having to self-advocate in those moments is anxiety inducing.
Also, been there with MH services. Do they know you are autistic?
Disappointingly, - 'cos they are the people who are supposed to get it - often they don't. Their training is sometimes very poor and our relationship with them can go downhill fast because they don't understand what we are so clearly talking about.
CBT will be useless for this particular problem because you aren't catastrophising over the sensory stuff. It's real! You need people working with you to help minimise the overload. And it won't help with communication problems and shut/meltdowns in there, because we don't choose them and aren't based in anything we think.
What we do need is to be allowed to use other communication channels and to try to mitigate the factors which increase anxiety and the likelihood of overwhelm.
Medical stuff will always be hard for us, but it could be made easier by them working with us.
I also had CBT, nope didn’t work for me either, my local mental health services (and I do have additional MH needs, although I’m starting to question if these aren’t in fact part of my autism) have black-listed me I think. When, and that’s not often, I do have contact with them they always say ‘we’ll you seem to be doing really well’, this is at the end of the appointment once I’ve rocked, paced, stimmed, not talked then shouted etc. etc.
I so hope this locum is open to some co-operation, that would really help. I’m going to write a letter to this new locum and just try and explain my needs a little further. I’ll have done all that I can do then. I’m still going to look into the advocate possibilities. It might be too short notice for this visit but it would be worth knowing what is available for future appointments.