EDS & HSD Awareness Month: My Journey, What We Wish You Knew, and Practical Hacks That Help
May is Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month, and every year I use this time to reflect on my journey, raise awareness, and share what’s helped me manage life with this often misunderstood condition.
I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) in 2016, alongside Postural Orthostatic Tachycardia Syndrome (POTS) and a spontaneous cerebrospinal fluid (CSF) leak — which we later discovered was caused by my EDS. Looking back I can see EDS had caused me huge issues throughout my life but after my symptoms became disabling, it took two years of active searching and worsening symptoms before I got any real answers, and I know I’m not alone in that as on average it takes 10 years to get an EDS or HSD diagnosis.
When You Can’t Connect the Issues, Think Connective Tissues
Looking back, the signs were always there — I was sporty but accident-prone, constantly bruised, always in more pain than my peers. I’d sprain ankles regularly, had constant headaches, and felt exhausted in a way no one else seemed to understand. But I didn’t realise any of it wasn’t normal — not until things escalated and I was left mostly bedbound by my CSF leak.
Getting my diagnosis was the beginning of a huge shift, not just physically, but emotionally too. I went from being told I was “fine” to learning that I had a genetic connective tissue disorder. We then discovered EDS was likely running in my family — my mum had unexplained symptoms too, and my grandad’s brother was apparently famous for his “strange party tricks.” The phrase “when you can’t connect the issues, think connective tissues” couldn’t have rung more true.
At 20 years old, being newly diagnosed, in chronic pain, and suddenly needing mobility aids felt isolating. I’d never even heard of EDS before my diagnosis, and I was told it was rare — something that left me feeling incredibly alone. That’s one of the reasons I started Chronically Jenni — to help others feel less alone and offer the kind of support I wish I’d had in those early days.
What We Wish You Knew About EDS & HSD
Even though awareness is slowly growing, there’s still a lot of confusion around Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders. So here’s what I (and the community) really wish more people understood:
1. EDS & HSD Are Spectrum Conditions
Both EDS and HSD affect everyone differently. Some people live relatively typical lives with only a few symptoms, while others experience severe pain, fatigue, or organ complications and require mobility aids, surgeries, or feeding tubes.
2. There Are Many Complications (and Comorbidities)
EDS and HSD rarely come alone. Many of us live with related conditions like POTS, Mast Cell Activation Syndrome (MCAS), Chronic Fatigue Syndrome/ME, gastrointestinal disorders, or neurological issues. There’s also anecdotal evidence linking EDS to neurodivergence. Our bodies often respond unusually to medication — things like sedation and anaesthetic may not work properly for us.
3. Medical Professionals Are Often Underinformed
It’s not unusual for people with hEDS or HSD to know more about their condition than their doctors. This makes seeking help incredibly frustrating. Many medical professionals don’t understand the nuances, especially for the hypermobile type — and it can lead to being dismissed, misdiagnosed, or even harmed by inappropriate treatments. I’ve had physios put me in extreme pain by manipulating my joints and A&E staff telling me I can’t have dislocated something without trauma (which is untrue for EDS & HSD patients). I recently had a hand therapy appointment with an OT who understood EDS very well and it made the world of difference not having to explain my condition and advocate for what I needed, it was a breath of fresh air being able to just trust in the professional but this shouldn’t be such an uncommon occurence.
4. There Isn’t Just One Type
There are 13 recognised types of Ehlers-Danlos Syndromes — including Hypermobile, Classical, Vascular, and Kyphoscoliotic — and 4 forms of Hypermobility Spectrum Disorder: Generalised, Localised, Peripheral, and Historical. Everyone’s experience is different, which can make diagnosis and treatment a complex process. Hypermobile EDS is the most common type of EDS but it is not the only type so we shouldn’t forget the rarer types. hEDS is also the only type of EDS that does not yet have a genetic marker identified therefore doesn’t have a genetic test for it at the moment.
5. There Is Support Out There
While accessing support can be slow and frustrating, it does exist — through charities, online communities, support groups, and people like me who share their lived experience. If you’ve just been diagnosed and been told “there’s nothing we can do,” please don’t give up. You’re not alone. You just have to find out what is available to you and advocating for yourself to be able to get the support you need!
My Top Hacks for Living with hEDS & HSD
These are some of the most useful tools and strategies that help me manage day-to-day life with EDS — and I hope they’ll help others too:
Ring Splints
Ring splints help stabilise finger joints and prevent painful hyperextension. I use them daily to reduce pain and make tasks like typing, holding cutlery, and using my phone easier. I am currently getting some new ones made by WeDesign Silver Splints so keep an eye on my instagram to see the process!
Cushions & Pillows
Supportive cushions — especially long body pillows — make a world of difference in bed. They help support my hips, knees, and shoulders, reducing joint strain and improving sleep.
Hot & Cold Therapy
Heat eases muscle tension while cold reduces inflammation. I always carry mini heat & ice packs for joint flare-ups or subluxations when I’m out and about. You can find out more about the specific hacks I use for Keeping Warm and Staying Cool on my Hacks page!
DM Orthotics Supports
I use shoulder and hip orthotics from DM Orthotics, which provide gentle compression and support. They help reduce pain and improve stability, especially when I’m on the move.
Biofreeze
Out of all the topical pain relief products I’ve tried (and I’ve tried a lot), Biofreeze is my go-to. The roll-on version is especially handy — no mess, no tingly fingers!
Ergonomic Knife
This adapted knife design uses wrist motion rather than finger pressure, making chopping much easier if your hands are sore or unstable.
You’re Not Alone
If you’ve just been diagnosed or are still searching for answers, know that your experiences are valid and your symptoms are real. EDS and HSD can feel incredibly isolating, but there is a community here — and so many of us are sharing what works in the hope of making life a little easier for the next person.
If you’re looking for more support, tips, or simply someone who gets it, you’re in the right place. You can also head to my Youtube Channel to find LOADS of EDS Awareness Videos to help you learn more and find the management techniques for you.
What do you wish people knew about EDS or HSD? Or do you have questions? Let me know in the comments!
