GP appointment; even when we are vulnerable we can shine a light

Hi folks,

Just felt compelled to share today's experience.

I've bored you all enough with how my medical/body anxieties are my nemesis and the catalyst for my diagnosis, after a long traumatic journey through misdiagnosis, to my realisation that I am autistic and my fairy godmothers at the Lorna Wing centre making sense of my whole life.

Well, physical symptoms scaring the b' Jesus out of me and couldn't get support to get over the threshold to the GP and make sense...saga goes on for permanent solution...a good friend from work (who I really can't thank enough) stepped into the breach and went with me today after a few hours of prep to workout how to communicate all this to a time pressed GP...

Got to get through blood work yet, but inspite of the challenges leaving me at my most vulnerable, this turned out to be quite a powerful experience in other ways.

First off, reception asked my permission for two students to be in there too. She was about to tell them 'no' in view of my autism...I said they should stay. They will have autistic patients. They needed to see my reality. Glad I did. I tuned them out; pretended they weren't there.  But my friend said afterward one of them had been really hanging onto my words. I pray God her future autistic patients get something from whatever she saw.

The GP clearly knew b***er all about autism as his opener was that there was nothing he could give me to cure my autism. "Austictic people don't want a cure", I managed to get out. Maybe he learned something too. For all his lack of knowledge, he showed willing to adapt and learn. He was intuitively operating on that equation Autism + Environment = Outcome. He managed to communicate what he needed through my friend. Willingness is all you can ask. He handled it well for all he was on a back foot.

Meanwhile, my friend did a good job of letting me speak when I could and taking over for me when I was mentally disassociating and shutting down.

We still have no permanent plan for my access to health care. That's still in everybody's too difficult to do pile, but at least these guys genuinely want to learn.

The odd thing is I can stand in front of hundreds and teach, to talk to a doctor when I struggle to keep the brain in the room and find words to describe the physical without meltdown or massive anxiety is challenging, but I had never considered that even at our most vulnerable and frightened and overloaded, we can still inform and others can still learn.

I left with some hope. This will never be easy for me. I can't ever go to a GP alone, but it was easier for their willingness to try to understand.

I doubt I could have done all that with that EUPD misdiagnosis in place though. Glad that's gone, but also now beginning to processes that I am traumatised and angry as Hell with MH for putting me through therapies for conditions I don't have and then blaming me when they don't work.  MH were not willing to learn, sadly.

  • hmm. i have to do that periodically.  one fun issue is that i have a big sensory problem with cotton wool! if they every use that, rather than a gauze pad ... i have a bit of a problem.

  • Hmmm....got to face the vampire (I mean phelbotomist) yet, lol

  • Having the correct diagnosis is such a good step forward ... glad to hear you are definitely heading in a better direction.

  • Don't they just.

    So sad these most essential of services don't get it. Methinks once I'm through this my professional trainer's hat is going back on, just as I thought I'd retire, lol

    I hope your daughter is better soon

  • Well done you though. You are doing so well! There's no shame in needing company when visiting the GP.

    I'm 26, have a very young daughter who's been sick and I've had to have my dad come to the GP and hospital to support ME! and I'm not the sick one lol. I have terrible medical phobia and the doctors are sadly less than understanding.

    Now at least you can be happy knowing things are moving in the right direction for you because you were amazing and did thisSlight smile 

    And don't worry about MH they are just the worst! They cause more harm than good in my experiences as well.