I didn’t cry when I got the diagnosis. Initially, I reasoned this away. My GP and I had

basically come to the same conclusion approximately seven months before, and I’d had

suspicions for God-knows-how-long before that. But the diagnosis, instead of being a

relief, seemed to sink into my bones, weighing more down further into the mental pit I

was descending into. Everyone kept telling me that it was great I had a diagnosis now,

because that meant I could get answers, but the only thing I took from the appointment

was the words ‘we can’t fix it’ reverberating around my head. Researching did not good,

as I read everything I could find on the condition, every webpage confirming the rarity of

it, and the lack of research that had been done. HSD, or Hypermobility Spectrum

Disorder, is not considered to be as severe as Ehlers-Danlos Syndrome, and lots of

people kept telling me how lucky I was. But for me, the diagnosis was too little, too late.

“It’s easy for you to say, I haven’t had a pain free day in six years!” I would roar inside my

head. Even internally, it hurt too much to admit to myself that I would never have a pain

free day again.

***

I didn’t know who to turn to, so I found myself calling out for help on Reddit. I wrote an

overlong, rambling post expressing everything I felt like I couldn’t say to anyone around

me. Somehow, strangers from all over the world reached out to me, sharing their

experiences and sending well wishes, telling me this wasn’t the end. One redditor’s

words stuck with me.

“You've had a diagnosis for 2 weeks but you have lived with HSD for 30 years. Look back

and see how much you have done, experienced and achieved in spite of that. :)”

***

The diagnosis had come at completely the wrong time. I had been made redundant from

a job I loved, with an understanding team, just months before and I’d only been in my

new job for about a month, but I knew I couldn’t stay there. It was bloody awful, nothing

like the job description or interview had presented, and I was working in a team of two

with a charismatic misogynist who found it funny to mock my condition. I had a plan;

find something else while I’m in probation, and leave at the end of the period, before I

would be trapped there. But then I had an easily preventable accident, and neither my

manager or his manager would tell me where to log the accident, or even if there was an

accident report log. It was the latest red flag in a long line of them, and after a job

reference was ‘forgotten’, i.e. ignored, I left after three months with no other job in sight.

I’d been there too long anyway.

I struggled with job hunting with this newly confirmed disability. I didn’t know how to

bring it up in interviews, or how to ask about accommodations. Due to my chronic

fatigue presentation, I was primarily looking for part time, or hybrid work, but I noticed

this turned a lot of people oZ. ‘I’m not lazy, I just need help,’ I would grumble to myself

after every interview, just knowing I’d been rejected in my gut.

I contacted Scope for advice, but they were overworked, and they weren’t always the

most helpful. Their advice was usually to follow my gut when it came to bringing up the

disability, but I had just done that, and it had ended terribly. I understood why so many

disabled people were either unemployed or self-employed, and it made me even angrier

at the government, who were yet again trying to cut disability benefits such as PIP.

***

Things started to speed up regarding my disability quickly. It felt as if my body was

disintegrating around me, even though everyone I spoke to told me it was just likely I

was just noticing it more now. I was acutely aware of my tight muscles holding my failing

skeleton together, and my heart would pound at the thought. The pain and fatigue were

normal, but suddenly I couldn’t sleep on my side for fear of my shoulder slipping out,

and I oscillated between desperately trying not to cry and sudden, intense rage. I wasn’t

healing well, I suddenly noticed a myriad of bruises appearing all over my body, and my

head was suddenly so, so heavy. To add to all of this, I was in the worst mental state I

had been in for years, although it wasn’t until I found myself absentmindedly walking

towards a tram that I realised how bad it was.

***

I decided if I was going to get better, I was going to get everything sorted out, so I set up

appointments with a private specialist physiotherapist, my GP to be referred to

Orthopaedics, and the self-referral mental health service. I didn’t even necessarily want

to get better, but I knew if something happened to me it would absolutely devastate my

mum. She’d been the reason I hadn’t done it a decade before hand, and she’d be the

reason again, but she didn’t need to know. The self-referral process was drawn out, and

was more annoying to me more than anything. It took weeks of assessment before

actually moving onto treatment, especially because they had to emergency assess me

for schizophrenia after I mentioned my hallucinations and the voices in my head. To be

completely fair on my part, I had no idea that other people didn’t usually have voices in

their head, and a conversation with a family member revealed they only heard thoughts

when they chose to think triggered a genuinely disgusted response in me. I had six

weeks of cognitive behavioural therapy, something I had tried before and knew didn’t

work for me, but rationalised that it was the cheapest option for the NHS.

The GP referred me for mental health support and to orthopaedics, appointments that

would take months to come.

“Good thing I’m not in crisis!” I would joke, painfully aware that I was in crisis, and that I

was screaming out for help, but didn’t know how to verbalise it. The orthopaedics

appointment came in a letter labelled ‘Your TRAUMA and Orthopaedics appointment’. It

made me laugh, thinking ‘mate, you have no idea’ to myself.

***

Even now, months after diagnosis, I am still struggling. Everything feels like it is hurtling

past me, and I am trapped in treacle, desperately trying to catch up. My once legendary

spelling skills are fading rapidly, and my increasing brain fog feels like it is eroding part of

me away. But things are better, in their own way. I understand my body a lot more. Since

starting the physiotherapy, my pain has significantly decreased, and my mobility has

improved so much that I can now straighten my damaged kneecap for the first time in

years. I still don’t know my limits, but I do know that I don’t want to walk in front of a

tram anymore.

Sarah R. New has been writing since she was 6. She specialises primarily in horror or fiction with horrific elements, but also writes speculative fiction and non-fiction. Her self published travel memoir, The Great European Escape, was released in 2023, and her Gothic horror novella, Amissis Liberis, was published in 2024. Sarah lives in the U.K., but frequently travels internationally. She can be found on Bluesky, Instagram and Twitter under the username aldbera.