With two diagnoses under my belt, a ton of research plus medical input, all the mysteries of my life have been solved. Yes! Solved! For years I was visiting the doctors, presenting with several issues over and over, asking them repeatedly for what I sensed had a definitive answer. Not one of those highly paid professionals joined the dots, drawn by me, right under their noses. That is until recently.
So it’s done and…
Ehlers-Danlos Hypermobility symptoms explained, ASD traits explored, questions asked and addressed. I’m glad I understand what has been going on since childhood. Yes, there’s still stuff to learn, but I have the important answers. And, guess what, I was not wasting the doctors’ precious time. What a relief!
Or is it?
For years I floated in limbo where it was my time that was being wasted. Now, all I can do is grieve for a lost life that is almost over.
Drowned under a sea of health issues, it feels too little too late. The youth party is over; career paths overgrown.
Life ruined by professional ignorance.
Knowing has certainly given me tools to navigate the next few years, be understood by some (not all) medics, get several needs met along with an ability to explain to those around me. Yet… yet… I find myself in another sea of limbo where fear of the future threatens to pull me under.
Grappling with EDS Hypermobility is a daily task. Add to the mix a gamut of ‘symptoms’ from what I thought was Asperger’s. Until, I listened to a recent interview with Kieran Rose, The Autistic Advocate who made an amazing statement. Something that had been swimming in my subconscious for a while surfaced. Kieran said:
“Autism has no symptoms.”
Of course! The traits of ASD are not symptoms. Traits are who you are as an Asperger person. Symptoms come from living in a world that does not cater for us nor match our ways of being. Our symptoms are the result of a vicious cycle of stress.
Having been given the gift of insight, where is the support? Yes, they offered 20 weeks of CBT tailored to Autism just so I can recognise my autistic traits. Helpful, but now that has ended – what do I do? Speaking for my situation, I want more.
They – the medics/educators – have left me coping with disability, unemployment and struggling to be in this world alone. Had this diagnosis happened when I was much younger I may have stood a chance.
Are there any possible routes to a better life at this stage? I thought with support I might be able to contribute something by using my ‘special interests’.
But the system says,
Many Autistic people do not cope with the NT world and with a physical disability on top, my only choice is being indoors. But what little I could do would be considered ‘self-employment’ where the system cuts you off.
I can only ever manage tiny amounts of time, but I would love to be given the opportunity to try, without being judged or forced into health damaging situations, to develop my strengths. The system does not want to give back to those it failed and I have been told I would lose everything if I even tried.
How negating is that? They destroyed my life, gave me all my answers then told me to go away and live with the isolation they created.
I’d love to ask the powers of the NHS and education system:
Ultimately, “I blame you for ignoring several generations of men and women who repeatedly asked for help.”
Sadly, at this point in time, I fear one outcome:
Yet… Pandora’s Box is open and I grasp at one last thing.
Written by Arty Auty