Hospital Appointments

Usually on the appointment letter there should be something if you need and special arrangements.  I usually ring and ask for a side room or somewhere quiet.  Usually there agree. 

No problem Binary, glad I could help. KY jelly is cool, but it doesn't taste good on toast! Spreads like a dream though!

Thank you for writing this. It is very helpful. Well maybe not the last sentence but it did make me laugh.

I just hate not knowing exactly what to expect.

No problem at all. Glad to share. You could just inform them in advance by post if you don't want to speak. In my experience over the last few occasions I've dealt with hospitals since my diagnosis, they seem to be accommodating. I'd even go as far as to say that they might have been briefed. I've been to 2 hospitals, various departments, and not had a problem.

I've handled some pretty crazy situations over the years surprisingly well. I was admittedly a total idiot until my mid-twenties. Once the adrenaline kicks in I can ride it out well. Problem is, just like you, It's not the things that are happening that make me nervous, it's what hasn't happened yet. I've been in hospital bleeding out on quite a few times, but I've had to have some pretty unintrusive things done, and got really stressed out about it.

As for the touching part, just try to put it into context well beforehand. It's not done in a way that is just to invade your space, or violate your senses intentionally. As I've said I can be pretty aggressive when touched without context, so my main concern is losing my temper. I genuinely can relax when I just put it into context. Think of it as theraputic. When it's over you can just relax, no more worry, and they will have sorted out the problem, if there is one! They are there to help, not like some arsehole who keeps leaning over you in a bar, or that guy who thinks a handshake is an animalistic mating hierarchy test.

I know I'm probably over thinking the whole thing but I just hate not knowing exactly what to expect.

You are overthinking it, but that's what we do! You are recognising you are doing it though, so that gives you a window to rationalise, prepare, and relax. Take it as a positive, you will be prepared, and it's experience for the next time you encounter something like that. Get in touch with your local autism centre, and get an alert card though. Just give them a call tomorrow, or as soon as you can. It's a pretty handy thing to have. Also I found ways to sort of control my fear of touching by doing sports where it's not an option not to be touched. That gives it a context, and some fun. Also I've found Tai Chi is gentle, relaxing, and you do very gentle exercises that involve touching, like pushing hands.

I don't like the idea of that jelly stuff they put on you.

KY jelly can be fun! There's a context for everything! Sorry I couldn't help myself........

That sounds like a great idea. I've just had to change dentist. My old one left. I'm not very keen on the new one. I don't think I could discuss anything like that with them unfortunately.

I have an agreement with my dentist - if they do any work other than a descale, I wear in-ear headphones up loud so I can't concentrate on anything - she taps me on the shoulder when she's done.

I can manage the dentist because I'm used to them and I know what to expect. Although I hate some of the noises. I think I've just had so little to do with hospitals I get more worried.

Thank you. That is helpful. I know I'll probably be alright when it happens. I just get myself so wound up.

Last year I had a terrible toothache and had to see an emergency dentist. He could see I was anxious and explained what he was going to do. Then while he was treating me he said things like "I'm just removing the old filling" "the drilling may sound a bit strange but it's perfectly OK" and "this will only take another ten seconds". I said to him afterwards how I noticed my anxiety reduce because I was given information and reassurance. 

I'm sure the people writing your report could send a short statement for you to use as necessary. Last year I went for 2 courses of preventive Radiotherapy for a benign condition. I was generally OK except when one of the machines broke down and there were long delays. I had only got a couple of hours off work and I ended up getting so upset they had to take me into a side room. I now realise this was probably a meltdown. 

You have total control - you can withdraw your consent to anything right to the last second.

If you put your issues and fears in writing, (keep it short & simple) they will be able to appreciate the severity of your anxiety and they will try to put your mind at rest.

They will be very kind to you.

Explain about your inability to ask the right questions - most consultants are happy for you to contact their secretary afterwards or e-mail them about the things you forget - I have to do it as my memory is useless too.

I think they're mainly doing appointments. I haven't really got someone to take with me to explain. I don't think controlling myself will be a problem. Like you say I can for the shirt time while necessary. It's just the build up. I get do worried. And I forget to ask all the things I want to ask at the end of the appointment and go home and worry more. I'm only really used to gp appointments, not hospital ones though.

A letter is a good idea. If I'd had the report back I'd ring the gp and ask for their help but until the report comes back there's not much I can do on that front. I find it really hard to tell the doctors whether something hurts or not when they press because it just feels weird. I can cope with it for a short time. I'm just worried how long these appointments will take.

Hi Binary. I got told off by the Physiotherapist because I flinched when he touched my ankle lightly. After that I got the impression he thought I was exaggerating the pain I am in.

If I get a diagnosis I am going to explain my reactions to being touched at my next appointment. Also, if diagnosed, I am going to ask for a letter I can use while I am waiting for the report to be written. 

I spend a lot of time in hospitals - I tell the people booking the appointments of my problems and they try to get me the first appointment of the day - this minimises the time I have to spend in the environment.

It also depends on the type of appointment - whether it's a 'talking' one or a 'doing' one. I find the talking ones difficult because I overload quickly so if it is going to be important decisions being made, I take someone with me to be my memory and advocate.

If it's just an annual update, I'm ok on my own.

If it's a doing appointment, I go with someone who can talk for me as I shut down with too much stress and am not able to communicate in a timely manner. (I realise I'm not the only patient they have to deal with so I try to make their lives as easy as possible while they deal with tricky patients).

The whole touching thing - I've given up caring - they have seen it all, done it all, to all types of people - probably a lot worse than me - so I step out of the situation.

I have problems with needles - I'm only interested in the second of the needle going in - I explain that to them so I can relax up until that point.

I can then control myself for a short period while they do the neccessary. I'm absolutely shattered afterwards.

I then need time at home to decompress and mull over what has happened to process it and make sure I'm happy with the future direction of treatment.

Thanks for your reply. I've been so recently diagnosed I haven't even had the report yet so I don't have anything to tell them I'm on the spectrum.

I can like you say deal with being touched in context when they examine you etc but this has only ever been for a few seconds. But I think with the nature of the appointments it will be significantly longer than that. I will tolerate it but it just makes me so uncomfortable. I'm worried about one in particular as it's an ultrasound and I don't like the idea of that jelly stuff they put on you.

I know I'm probably over thinking the whole thing but I just hate not knowing exactly what to expect.

Do you have an alert card? I have an extreme sensitivity to flourescent lights. I also don't like being touched, I'm not too bad if there is a context to it though such as a doctor's appointment. If there isn't a context I can be pretty nasty.

I've found that when I present my alert card they are pretty accomodating on the day. Last time I went they found me somewhere to wait without the lights, my X-ray was called quickly, and they asked me if I was OK with being touched. Surprisingly prepared for Autism, quite refreshing!

As for appointments I always need a pretty long advance, say a month or so to prepare myself, I'm pretty much agoraphobic, so it always helps to have advance. If it gets sprung on me I do find it daunting.

One thing I don't worry about is if they find something wrong. They are as likely to find it's nothing to worry about, and if something is making me feel ill, I will be on the way to getting it sorted.

As for ringing them to ask, why not? That's their job. If they think I'm silly, it really doesn't matter. I don't know them and they will have forgotten my name within the hour. If you are polite, and not ringing 3 times a day, you will be the least of their worries. They deal with total arseholes, and pests. A polite phonecall probably is a good thing to them!

Hope you have an easy time of it all. Remember you'll probably be better off at the end!