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A little lost

xiv

I am  feeling a little lost and have no idea what to do.

I was diagnosed as an adult after going through a difficult time about 5 years ago, the diagnosis came out of the blue and was a bit of a shock but having had time to reflect it makes complete sense. It seems I have masked through childhood into adulthood but after diagnosis I am struggling to mask, it is like I have become more autistic now, i question myself all the time and beat myself up for behaving this way but I continue to struggle.

I am also in the process of getting an adhd diagnosis which again is making things fit into place but I amd finding that I am causing more problems for myself and life is just hard. At times I feel i don’t want to be here and have discussed suicidal thoughts with my GP but sometimes I think its more that I would like to reboot ie turn myself off and on again like a computer but the lines have been blurred and I feel the GP always goes back to when i was suicidal and assumes my problems are mental health related. I have a physical disability too but since my autism diagnosis this seems to be ignored but also I feel the fact I am autistic is also been ignored.

I am sick of feeling like I do and also not having the energy to mask and from looking online I think that I am going through what people describe as autistic burnout but I am not sure if this is something that lasts as longs as it is for me, so maybe I am wrong.

I find I struggle to advocate for myself in almost all circumstances and the more I get misunderstood the worse it gets. I am currently having a get issues with HRMC, water company and the GP which has gone on for ages, simple things have grown into bigger things and its like nobody understands me. I don’t tell people I am autistic as felt it was like i was playing some sort of card but in the 3 scenarios mentioned I now have to see if i can get some help. Unfortunately whats happened is that it seems to have made things harder, the GP for example obviously knows about my autism but wont make any adjustments for me. I am not asking for much or I dont think I am - I just want the same GP (when possible) I want them to explain why I have all these hospital appointments and what they are for and just listen to me and actually check back I have understood. Since I have actually asked for them to take my autism into account they have said I will ahve to see a different doctor each time, the doctors i have seen are not aware of what the hospital letters are for, they have given me medication that if I had taken I would have been seriously ill and on the last visit the doctor locked the door. She never said she was doing it but I saw her and started to panic. She said it was clear i was distressed and said it was okay to leave so that meant it was a wasted appointment. The issues with Water and HMRC are getting me so stressed and I just feel like I am stupid because I don’t understand and they wont explain anything to me.

Not sure what I am really asking here I think I just want to know if anybody else felt more autistic after diagnosis and did this change?

I honestly feel like I cant cope with day to day life which I managed until diagnosed, will life get better or is this me now 

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  • I also feel "more autistic" since diagnosis (nearly two years ago). I think it's about being more aware of our traits and perhaps less willing to mask. Also, being on this forum has let me realise that a lot of what I thought were personality quirks are actually autistic traits.

    The way the doctors are treating you seems very wrong. My GP surgery seems to have become less responsive to patients since COVID. Maybe that's a more widespread thing. I don't know why they have the rule about not allowing you to see the same GP each time, although I suspect they don't want good GPs to be oversubscribed and bad GPs to be undersubscribed. My surgery is the same. I'm not sure what you can do to change it. Did you speak to the GP or the receptionist about it? Is it possible to switch to a different surgery (although things may be the same there too)?

  • in reply to Luftmentsch

    Hi

    It is about 5 years for me now. I am lucky compared to some and have a really good life compared to some but  even though I am 5 years down the line I don't really tell people. The ones who I have told have all said that it makes sense, makes me wonder what they thought of me before the diagnosis and just didnt say anything.

    My GP surgery has been fantastic over the years with my physical disability and then after my autism diagnosis they gave me a new GP which I found really difficult so a family member came with me until I felt comfortable with her. I was struggling with lots back then so had quite a few appointments but I now maybe have 4 a year max, so I know that I am not one of those causing problems by going all the time. I thought the new GP would talk to me about my autism but she never really mentioned it and I felt it was brushed under the carpet, I also felt that I left appointments still unsure about things because she didnt check back I understood. When I think about it she changed nothing to help really. Now they decided I have to have a different GP each visit which in my opinion would lead to more appointments due to confusion but I have decided to try and manage things myself.

    When things got too much at the gp surgery I paid to see a private GP and he felt they were not treating me well and also felt they were missing something that was obvious. He suggested ADHD, he thinks that some of my Autism traits are fighting with the ADHD ones and visa versa - Well thats if I understood him right. I am on the list for an assessment if I have ADHD there is some medication that could help apparently 

    You could be right in what you say about me been more aware, I don't think I am less willing to mask its more I don't have the energy to do it. Prior to getting ill 5 years ago I seemed to manage really well and sometimes wish I hadn't been diagnosed.

    Thank you for your response it helps knowing others understand 

Reply
  • in reply to Luftmentsch

    Hi

    It is about 5 years for me now. I am lucky compared to some and have a really good life compared to some but  even though I am 5 years down the line I don't really tell people. The ones who I have told have all said that it makes sense, makes me wonder what they thought of me before the diagnosis and just didnt say anything.

    My GP surgery has been fantastic over the years with my physical disability and then after my autism diagnosis they gave me a new GP which I found really difficult so a family member came with me until I felt comfortable with her. I was struggling with lots back then so had quite a few appointments but I now maybe have 4 a year max, so I know that I am not one of those causing problems by going all the time. I thought the new GP would talk to me about my autism but she never really mentioned it and I felt it was brushed under the carpet, I also felt that I left appointments still unsure about things because she didnt check back I understood. When I think about it she changed nothing to help really. Now they decided I have to have a different GP each visit which in my opinion would lead to more appointments due to confusion but I have decided to try and manage things myself.

    When things got too much at the gp surgery I paid to see a private GP and he felt they were not treating me well and also felt they were missing something that was obvious. He suggested ADHD, he thinks that some of my Autism traits are fighting with the ADHD ones and visa versa - Well thats if I understood him right. I am on the list for an assessment if I have ADHD there is some medication that could help apparently 

    You could be right in what you say about me been more aware, I don't think I am less willing to mask its more I don't have the energy to do it. Prior to getting ill 5 years ago I seemed to manage really well and sometimes wish I hadn't been diagnosed.

    Thank you for your response it helps knowing others understand 

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