I'm struggling with pains. Mostly head and stomach pains which are getting worse by each day. They bring with them a feeling of utter lousiness and it’s just ugh I don’t know how much more I can take. I’m all for living life and waiting for things to get better but I believe this is part of my asd and actually may never get better and that is an alarming thought for me. I can’t live life in pain and discomfort not forever. I’ve been having distressing and negative thoughts for a while and have also considered not living for much longer like planning things out. I love my family and I love life but I don’t see the point in being here if I’m unable to enjoy life and currently, the pain and discomfort is making life unpleasant for me and my loved ones. My mood is all over the place. I’m not able to keep it in check and have outburst because of the pain.
I work in a hospital and have seen people die before and I feel envious of those people. The dying process can be unpleasant but the actual dying bit is like switching off a light. At times I dream of that happening for me because there would be no more pain, just peace and bliss. It’s wrong to think this I know but really the pain and feelings I go through every day are getting unbearable and no one seems to be able to or want to help. I've had the pains for the last ten years and now they are so much worse they are making me feel really bad most days.
I don’t see myself being here much longer but I thought I would try this place as you guys are all likely to have experienced this or similar I hope.
The pain has been bad today, but eased up this evening so now I’m just relaxing to some music. The bad thoughts are still with me but I’m trying to be as positive. I’ve been thinking about things which might help me with the pain, relaxing to gentle music helps but I’m wondering if I should start eating breakfast as well? I used to eat breakfast but I stopped in the end, eating often results in me feeling bloated and sick, and this feeling lasts to the next day as well so I stopped that. The pain is really getting to me now. It’s always there, like an itch that won’t go away or get any better. I’m also tired, so tired that I feel like I could fall asleep at any moment, I’m feeling so bad. It’s horrible. It maybe could be a migraine or something related. My sister, she suffers from migraines a lot, and she’s also Autistic though we’re not that close anymore. I really want to call my gp or the 111 number but I’m scared of what will happen or what I’ll say. I’m not good talking to people about things like my health, especially if they turn nasty towards me which has happened before. Just don’t know what to do anymore, feel lousy and in pain all day long and waking up in the middle of the night in pain can be annoying as well as afterward I don’t feel well. I’m tired and want to sleep forever, it’s getting harder to get through each day now. Life is agony and I feel like my body is starting to give up on me, physically and mentally. Mentally my life is shutting down or that’s what it feels like. As I said before I don’t think I’ll be around for much longer, this is hard to live with and I feel like there’s no one who can help me. The trouble is, as I found out with my gp last time, they didn’t understand Autism so weren’t very helpful and turned quite nasty at one point which put me off.
1) If at all possible, write. I think this is the key. Have you tried that? I always do that myself. Explain to your GP in the letter that you're not good at talking on the phone due to your autism which is why you're doing it in this unusual way. If she remembers what happened last time then she'll probably be pleased you did do it this way!
Even if she wants to speak to you at first hand afterwards, if you can manage to write her a letter first, getting as many of the facts over as possible, then you can be sure of giving her those facts at least. Hopefully if it's clear from the letter that something is seriously wrong, your GP will be worried enough that she'll be prepared to take a bit of trouble listening to you, instead of brushing you off thinking you're wasting her time.
I have problems with talking to people in person or on the phone too, although possibly for different reasons, and my parents and I have always found that writing to any medical practitioners ahead of appointments, from GPs to specialists to blood-test nurses, is absolutely essential. First, to tell them as many of the basic facts as we can think of to cut down what we need to get through at the time, and second, to explain about my problems talking to them and warn them to take it slowly.
If you like, I could check the letter for you, or even write it for you if you send me scribbled notes. I've had a lot of practice over the years at writing doctor letters about complicated things, and I'm told I'm pretty good at getting things across both clearly and politely.
2) Tell them in advance what your difficulty is with talking to people. The one rule my mum always tries to impress on all professionals when she writes to them ahead of the appointment is "She can't sort herself out while people are talking, so if she starts to get into a state, or if she asks you to, stop talking completely for a minute until she sorts herself out. Don't try to jolly her along, that or anything else you say at that point will make things worse, just stop talking. This is important, if you remember nothing else remember that". This has saved our bacon more times than I care to count.
Might that be a thing for you, too? If what you have is the autistic person's usual problem of just-too-many-words-at-once-can't-think, that would apply. The other thing you could say to them is "don't go too fast".
When I say I have "problems" with talking to people in person or on the phone, I mean there've been phases when if things went too badly wrong I would fall to the ground screaming uncontrollably. So if with these precautions I can manage to successfully see a GP and get medical attention, so can you.
3) Bring lots of notes. Did you have plenty of notes with you last time you tried to speak to the GP? If you have to speak to anyone in person or on the phone at any point, make sure you have plenty of notes. Ones you can pretty much read out from, not ones that require coherent thought! In fact, what I do is write a sort of script, listing the points I need to get across, numbered. Then I can check the list as I go and do my best not to ring off until I've told the doctor all of them. My mum does this for complicated phone calls and says it makes the world of difference and she's not even on the spectrum.
4) PALS. Don't know if you've tried PALS (Patient Advice and Liaison Service). They're supposed to provide help if patients are having trouble negotiating the medical system in any way, and they're pretty good, they've been useful to us a couple of times. They might have something to offer. https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/
5) Is there anyone who can go with you? In this case I suppose they'd have to be in the room with you and use the speakerphone function, or do a conference call. You know, someone who doesn't lose their head as easily when talking to people and can step in and explain or stall them if you can't keep up. I expect you've thought of that though.
6) Is it a group practice? In that case, you could ask to see a different GP? Probably it isn't or you'd have thought of that, but I thought I'd ask.
Hope any of this is some use to you. Please do see somebody about it, if you can find a way to get your point across to them at all. It might be hard work but if it's worth topping yourself over, it's worth enduring a hairy GP appointment over.
Hi, thanks for the list of tips, this is really helpful and I’ve noted them all down. At appointments I usually go very quiet and find that I’ve lost my voice until after the appointment. Writing down about my pains might be the best thing for me to do here and see if that will help. Things are starting moving here again now so I should be able to get a gp appointment sooner rather than later.
Pain has been extremely bad since yesterday. Yesterday it was unbearable at times, so bad that I couldn’t actually move and spent most of the day in bed just waiting for it to subside. I was in tears at one time and was near a point where I thought of calling 999, but luckily it never came to that. Today it’s bad but not as bad as yesterday. Right now it’s just an ache of pain which keeps shifting all over my body. My head is quite painful as well but I didn’t sleep well so I think its lack of sleep causing the headache. Worst of all, I have to get some food in today but I’m not feeling too great, I’ve been feeling very faint for the last few days and I don’t want to pass out in front of a shop full of people, so I have that to worry about. I’m going to leave it a bit and hope that the pain and feelings of unwell ease before I head out.
Very best of luck to you! Do let us know what happens.