Going to appointments (medical)

I agree, I think also voice notes are good too to play back.

I can relate to you - I have joined a few Facebook groups and it can make you feel very stressed with others opinions/life experiences. Plus some people have access to private care.......

I also have trust issues due to my mums lack of care historically. I have a few tips - write everything down

not all GPs are the same

leave yourself voice notes

email yourself notes

My memory is poor and I zone out when someone is talking to me. As an example I met with my psychiatrist today and forget to take shades with me as the room is so bright. I walked in and the pharmacist was also sat there (unexpected). Then my anxiety peeked and dropped after talking about my medication. I managed to stay focused on what I wanted from the appointment and asked if it will all be sent in a letter, I am just very honest with difficulties. 

The best approach for me has been to compose a paragraph or two when I am at home, clearly explaining what I want to say, then pass it to the medical professional at the appointment. I found that made the appointment much less stressful, I was more in control of the situation because I was communicating on my own terms, and it didn't matter if I couldn't get many words out. Importantly, I knew I wouldn't be misunderstood like other times. I think most doctors find it helpful too because it makes their job easier. They will probably still need to ask you questions, but it's a much easier way to start the conversation. 

I know you said no one can take you to the appointment, but another thing you can try is organise for the medical professional to phone a close friend or family member during the appointment, then they can help with communication without needing to be there in person. My mum did that for me once last year.

Im trying to remember how i was before i had my ovaries removed. I was very emotionally distressed from PMT then the heavy cycle then a week to recover. It was the right thing for me to do. The process for me was fine. Bare in mind  that you would go straight into menopause then, but likely be offered HRT. 

Honestly I want them to take it all away. Although whether I could handle the experience is another matter. They wouldn't let me do it when I was younger in case I "changed my mind about children" . Hell I knew I wasn't having kids from 5yrs old lol 

I suffered terribly with PMS then with the whole cycle that i had my ovaries removed at aged 40. It was such a relief. It was an extreme act but i couldn't cope. I think had i known that i was autistic, and able to understand myself better, i wouldnt do the same again, but i couldnt see another option at the time x

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 

I'm with you on the life threatening only visits. The medication never seems to work properly for me, and I've read many autistics say the same thing. There's some evidence to suggest we respond atypically to medications and illegal substances. My therapist is going to send me her psychiatry magazine when she's finished with the latest issue, it's about neurodiversity and medication.  I'm so affected by periods that I'm giving this one last go but after that I'll probably give up. I'm 45. Menopause can't be far away, surely! 

I love the autism passport. I can't believe the BRAND NEW IT system at the hospital doesn't flag this stuff on the front screen, the old one did! (I know, I worked there). I think I'll look for the passport and send it to the training department. I agree most clinicians at appointments want the information about their patients needs. I got really lucky at my last medical apt, the physio had autistic family and knew what to do. I would definitely need info like you described of I got landed in inpatients. But then again, I used to feed patients when I was visiting mum's ward because the staff didn't have time to help prompt/cut up food. 

I rarely visit the doctor anymore. I now know what is going on with me, since i discovered that i am autistic. I realise that unless it is life threatning, needs specialist service then all a doctor can do is prescribe medication. 

I have and still do take notes during apt or telephone consultations, because i dont remember whatvwas said.

I prepare by making notes to remind myself what i want to say. Its usually a pointless activity though. 

Medical proffesionals can appear intimidating and can make you feel worse unfortunately.

It upsets me how services are not more easily accessible to those that need it x

You are so welcome!

Thank you so much for this - so helpful. 

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.

That part where you have actual knowledge in the area is probably the important part. For anyone who has no medical background you just end up mistakenly thinking that you have a very rare disorder and freaking out.

No matter what time it is I would gain nothing except increased anxiety if I started trying to diagnose and treat myself. 

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.

I think this kind of passport would have been useful for me when I was in hospital recently.

 I found it quite stressful because I would have professionals visit me one after the other on the same day (social workers, nurses, OTs and physios).

I also think that another thing I found stressful was that the majority of the time I didn’t feel in control when staff were supporting me as they didn’t tell me every step of what they were doing. Also I am very literal so sometimes there was some miscommunication about some very important information.

I didn’t disclose my autistic identity whilst in hospital as I didn’t think it would mean very much to staff.