Member Blog:
Diane - aged 58
Carer | Teacher/outreach teacher consultant -MA (ASC)
I was the kid that attended hospital a lot.
Activity and me equalled frequent A&E visits, and my mother worried that she would be accused of neglect...
It all started with listening to a lamppost; it was making a whirring, buzzing type of noise – it was the 70s, and there were no other distractions.
Times were simpler.
I turned my head to listen; my neck clunked, and then it never was the same.
The pain was intense and continuous.
At some point it was decided I had a weak neck, so the solution was to give me a rigid surgical collar for 9 months (again, it was the 70s) and in the short term, this did provide pain relief – along with the gift of degenerating muscle tone.
Age 9, I went to an Orthopaedic Hospital to investigate my now-wobbly neck.
There were no conclusions as to why my neck hurt, or what had happened.
I was prodded, my joints manipulated by doctors whose names my parents were never given. I was given physiotherapy to wean me off the collar, and given psychologist reports to check if the pain was 'in my head'.
The conclusion was that my pain was real, but no clear diagnosis was given.
I went on to live a life interrupted by pain, more surgical collars, whiplash several times.
The most embarrassing incident occurred whilst riding the dodgems at sixteen years old.
Due to these constant incidents, I virtually missed my primary education.
My only diagnoses to date are fibromyalgia, CFS lurking somewhere, and the not-so-stunning revelation in my fifties that I, too, joined my neurodivergent family with diagnoses of dyslexia, dyspraxia, dyscalculia…and maybe more to come.
So, what made me recall this?
Years of chronically ill children with diagnoses of autism and flexible joints.
A son that fell down a set of stairs, who should have broken his foot, but it folded beneath him; a jaw that partially dislocates, and finally finding that he scored very highly on the Beighton score.
A daughter under the care of various specialists, but no connections made as to where the story was leading. Decades of school attendance being poor. At one point my daughter managed 64% of a part-time timetable, and this was an achievement.
The complete lack of understanding from schools impacting on their mental health, and still no thread seen by the medical profession as to what could be causing physical symptoms. All was put down to autism, not to pain, fatigue or ill health.
The deficit/medical model of autism has not helped: the narrative that autism is a problem, without investigating the wider physical environment that impacts the autistic person.
Could an autistic child be school refusing because they are too ill to attend?
Experiencing illness/pain whilst autistic is a sensory nightmare.
It would seem to be the experience of most autists that nobody asks.
One thing is clear: a deafening silence regarding the experiences of autists falls over most research.
This drew me to start looking for connections for myself, and this is when I found SEDSConnective’s thread on twitter discussing how hypermobility can manifest itself as different symptoms – yet they are all connected.
How these symptoms can impact on a person’s day to day life.
A lightbulb moment happened: autism, neurodivergence, chronic pain, unexplained injury, lost schooling (and now university), collecting diagnoses from various hospitals and consultants… the thread is clear.
So, I have collected all the different letters, all the different diagnoses; armed with information from SEDSConnective, I have been able to discuss hypermobility syndrome with doctors, and a new pathway for support may be possible.
Of course, this hasn’t helped the immediate issues, such as my son’s patella suddenly slipping out of joint when camping, or the complete blank expressions from the workers in a first aid tent when I attempted to explain what had happened and asked if I could I borrow some bandages to stabilise his knees to get back to our campsite.
I can only imagine what we looked like; son borrowing his sister’s walking stick, both leaning on me with little balance, limping and swaying across a festival field at 2am in the morning!
At least though, long-term, I feel that there is a pathway to follow, less wobbly than across that festival field, and there is support and understanding from SEDSConnective.
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If you are worried about your symptoms, are struggling to find diagnosis or just looking for advice - please contact us here: general@sedsconnective.org