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Struggling to get over block in visiting GP services

Crys
2 months ago

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

  • 2 months ago in reply to jamjar

    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 :) 

  • 2 months ago

    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

  • 2 months ago

    Thank you for your responses so far, currently digesting what you have said. C 

  • 2 months ago
    Crys said:
    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.

    Support is very limited. This site is possibly one of the best resources you will find (the search button on the top right lets you search previous discussions) although there may be local autism support groups in your area. If you are ok to let us know the town/city nearest you we can let you know what is there.

    As for going to the GP, I would recommend writing out a letter explaining your symptoms and requirements - keep it as brief as practical while including the info (dates/ durations / severity are important) so you don't need to answer many of the questions from your GP.

    Start the letter by saying you have issues in interacting and answering questions which is why you gave this letter to him with all the info you have. They will probably still ask more questions but there should be few. It is probably worth saving your energy for these that hoping you have explained enough to your friend to answer on your behalf.

    Crys said:
    Second Question: How can I, as a younger woman with a mostly disguised presentation of Autism, advocate for myself,

    Inform them in writing about your selective mutism and why you need to write to them with the details rather than face a grilling when you cannot be sure to advocate successfully.

    If you are systematic and thorough in explaining everything to them about the reason for the visit then it will be more effective than them trying to tease the info out, so they are likely to accept this.

  • 2 months ago

    Hey Crys, unfortunately I dont have any tips or solution to give out to you, but feel like I should leave a comment anyways because I resonate so much with what you described. I have so many health issues that I dont even know where to start, as a late diagnosed womxn as well I feel so lost and calling them up triggers a lot my anxiety. Lately I've been thinking a lot of getting someone that knows me to advocate for me as well during GP consultations or even phone appointments. Hopefully we can find a way out of this situation and something that works for us, just want to make sure you know we are not the only ones going through this, as on top of it all it can leave behind a feeling of despair and loneliness. 

  • 2 months ago

    I haven’t used an advocate no. I would just go myself personally because that’s what I am used to. It depends what you want an advocate for. Do you want the advocate to speak on your behalf etc? If you think it will help you should go for it! There is a lot of support out there. It’s about knowing exactly what you need or even think you need.