Hi all
Thank you for letting me join your community.
I have recently been diagnosed with Hypermobility Spectrum Disorder (Ehlers Danlos Syndrome) with several traits of autism following a lifetime of allergies. It was a consultant Allergist how diagnosed the HSD. Massively interesting because I went privately to see him as the NHS response to my many allergic issues was not helpful. The consultant spent 4-5 minutes looking at the allergic symptoms, then spent around 15-20 minutes describing my healthcare history, my clumsiness, poor digestion issues, personality and my habits and behaviours, and my Brother's, to a tee. It was as though for the first time in my life someone has seen "beyond" what I was saying for the first time in my life - I am 53.
For as long as I can remember I have had a lot of minor health issues, diagnosed on many occassions with Migraine, Irritble Bowel Syndrome, Hayfever, Anxiety Disorder, stress, depression and I have been told I dont listen to or follow the advice of the doctors, when the reality is that their advice has not worked for me, pretty much every medication I have ever taken causes a variety of fairly horrible side effects, and I got to the point where it wasnt worth turning up because it was too stressful, too owverwhelming and too upsetting being ignored and told there is nothing wrong with me. I dont think it has helped that I have a high IQ, I am highly qualified and have a senior level job in a local authority. So I basically dont fit the profole of someone who needs help, and when I have asked for help and the advice hasnt been right, I have struggled to articulate this. I have always felt different, I dont "get" things that others are saying, I hate noise and crowds, I need to know everything about a subject almost obsessively, and I struggle to function at times whenI get overwhelmed. I have had several "shutdowns" over the years, where i have needed to take take off work and have been completely unable to do anything - distressing for me, and inexpicable to thiose around me, particularly as I have had no idea what was going on. The only thing that really works for me is controlling anxiety through talking therapies, yoga and meditation and avoiding a vast array of allergens (Soya, Dairy and an array of plant proteins). I cannot take antihistimes, as they make me really poorly.
Over the course of the consultations, the Consultant diagnosed HSD, Mast Cell Activation syndrome and a number of associated behavioural traits. He asked me to research a number of things, and during the follow up consultation he very gently suggested that I have many autistic traits, which he said are consistent with what would previously have been considered Aspergers. He also said that the NHS's policies for diagnosis for ASD is based on the observations of young boys and men, overlooking the research on the links between HSD and Autism and presentations of autsim in women.
I firmly believe I dont need "fixing", but it would be good to be understood a lot more.
My question is whether it is worth even bothering to pursue a formal assessment / diagnosis?
