Published on 12, July, 2020
Hi there,
Apologies if this has been covered already - I figure its not a too unfamiliar exception that some additional views couldn't hurt. Don't feel obliged to answer all of the questions. TIA
Getting to the point - I am writing to see if any ND/Autistic folks have been able to use something like an advocate for when you want to visit the GP, arrange appointments?
First Question: I am recently late diagnosed Autistic womxn, and so unsure what support is available. Unsure if it is better to try and recruit a friend as a advocate while visiting GP. (Not entirely sure how possible that will be for me.)
Personally, I struggle just to book an appointment, probably based off of years of painful interactions and dismissals, that either felt like I was being gaslit about potential issues, or like I was trying to fit a square peg in a round hole. (couldn't think of a better analogy.
One of the last experiences I had, the GP said I needed to forget about having previously been diagnosed a Hormonal Disorder in relation to pelvic pain- despite it being something that can develop into further complications if untreated...
I know this isn't an uncommon experience, but it's got to the point I feel I have too many potential issue's I should visit the GP about, I do not know where to start.
Things around not breathing well, also loss of smell, (followed by appetite for around a year)
Severe fatigue
Constantly feeling unwell
To me, if feels it makes sense to mention these things together, but its possible, because I have scripted beforehand, I do not feel I have said all I needed to say, and get caught off gaurd by random questions from the GP.
Second Question: How can I, as a younger woman with a mostly disguised presentation of Autism, advocate for myself, or speak to the surgery about this issue, as I know as I get older, it could be even more important. - It took me 2-3 years to build up the courage to suggest to a GP I think I am Autistic, just as an idea of where I am at.
Last question: What solutions, techniques have other folks tried with some success?
Thank you in advance for reading.
Crys
i cannot book appointments for myself but i find using the NHS app to make an appointment (if your surgery allows it) helps me. i find it impossible to call the surgery and follow all their rules - "it's now 10am, we're full but we can't book thursday afternoon until 4pm" - it was hard enough to pick up the phone.
i am terrible when i get to the appointment too and just agree with the doctor. when i have stood up for myself and brought a letter that i have written with what i want to discuss, i'm dismissed and the gp won't read it.
i now take my husband in with me to speak for me and that seems to work.
i also had to find a gp that i could get on with, maybe that's the biggest one.
i find starting conversations with "i am autistic" generally makes gp's/receptionists pay attention.
hope this helps
Thank you Phil.
You may have stumbled across the reason I find it so distressing, when you mention ''i also had to find a GP that I could get on with, maybe that's the biggest one.'' - I realised (again) that initial meetings with professionals like GP's, feel like a big deal to me, and so yes, If I could find a doctor I feel comfortable with - and go back to again - maybe the experience would feel less excruciating.
Thanks again, I am pleased your husband is supportive and that is working for you :)