ID: Photo of people in a work meeting
Growing up, I knew I was flexible.
I could do the cool party trick of clasping my hands together and somehow getting my arms all the way around my body without letting go. I could do the splits without practice. I could place my hands flat on the floor without bending my knees. My fingers are all double-jointed, which made for some pretty freaky-looking hand tricks.
At first, it felt fun. Different. Almost like a talent.
What I didn’t realise at the time was that my body was quietly trying to tell me something.
May is globally recognised as Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder awareness month – a time to shine a light on conditions that are often invisible, misunderstood, and difficult to diagnose.
For me, the signs were there long before I had a name for any of it.
When “Normal” Isn’t Actually Normal
In high school, I started getting migraines. In Year 12, I developed a shin splint. I was constantly finding bruises in random places with no memory of how they got there. Joints would dislocate easily – and by easily, I mean sometimes I’d simply sit down and my knee would pop out of place. Rolled ankles were practically guaranteed during PE.
And then there was the fatigue.
Not “I stayed up too late” tired. A deep, relentless exhaustion that followed me everywhere.
If I was sitting still for too long, staying awake became a battle. Uni lectures were especially difficult. I lost count of how many times I fell asleep in my seat – not because I wasn’t interested, and not because I hadn’t slept, but because my body simply shut down when stationary for too long. Snacks during lectures became a survival strategy. The hour-plus drive home afterwards was awful. I used to keep my mum on speed dial because talking to someone was often the only thing that helped me stay awake.
There were other symptoms I couldn’t explain, too – like air hunger, that unsettling feeling of not being able to take a full breath no matter how deeply you inhale. For many people with HSD, connective tissue differences can affect the way the ribcage expands and moves, making something as automatic as breathing suddenly feel like work.
The strange thing is, for years I thought this was normal.
I thought everyone’s joints hurt. I thought everyone felt exhausted all the time. I thought everyone bruised easily, rolled their ankles constantly, or felt breathless for no obvious reason.
The Long Road to a Diagnosis
Then I was rear-ended at a traffic light and experienced whiplash.
What followed were months of appointments with different healthcare professionals. Physiotherapists. Chiropractors. Osteopaths. I’d get temporary relief, but nothing lasted. One chiropractor would realign my spine only for it to shift again almost immediately.
Eventually, I was diagnosed with HSD.
The diagnosis itself was strangely anticlimactic. I was handed an A4 piece of paper with a little bit of information and sent on my way. No real explanation. No roadmap. No support network. Just a label for something I barely understood.
But at the same time, it finally made sense.
The joint pain. The instability. The bruising. The fatigue.
Unfortunately, my experience of waiting years for answers isn’t unusual.
Recent global research involving almost 4,000 people found that, despite affecting as many as one in 500 people, those living with HSD wait an average of 17 years from symptom onset to diagnosis, while people with hypermobile EDS wait even longer – 22 years on average. Most reported experiencing symptoms in childhood or adolescence but were often misdiagnosed or dismissed before finally receiving answers.
That statistic stopped me in my tracks when I first read it, because it reflects what so many of us already know: the symptoms are real, but recognition often comes far too late.
Later in life, I spent years seeing specialists trying to work out ongoing gut issues, only to eventually learn that this too can be connected to HSD.
That’s one of the hardest parts about invisible disabilities and conditions like HSD and EDS – symptoms don’t fit neatly into one box. They affect multiple systems throughout the body, not just joints. Research now confirms what many people with lived experience have known all along: HSD is far more than simply being “double-jointed.”
The Problem With “Just Exercise More”
Most of what I’ve learned since my diagnosis hasn’t come from the healthcare system. It’s come from lived experience, online communities, and social media – from other people with HSD and EDS sharing what has helped them navigate daily life.
And along the way, I’ve also learned how frustrating misconceptions can be.
“Just exercise more.”
“Just stretch.”
These comments are usually well-intentioned, but they completely miss the reality of living with hypermobility.
If you’re hypermobile, exercising the wrong muscles or moving in the wrong way can cause more injuries. I was constantly pulling or pinching muscles because my body was compensating in ways it shouldn’t have to.
And stretching? My muscles are already overworked. They’re tight for a reason. They’re trying to hold my body together.
I used to explain hypermobility to people by saying, “My muscles do the job my ligaments are supposed to do.”
Even though I know it’s a lot more complicated than that, it’s still the simplest way I know how to describe it.
Invisible Doesn’t Mean Imaginary
The reality of invisible disability is that people often only see what’s on the surface.
I “look fine”.
But what people don’t see are the joints slipping out of place, the constant fatigue, the pain, the muscle tension, the migraines, the air hunger, the digestive issues, or the way everyday tasks can take more energy than they should.
That’s why awareness matters.
Not for sympathy, but for understanding.
Because there are so many people living with conditions like HSD and EDS who are still searching for answers, still trying to explain symptoms nobody else can see, or still questioning whether what they experience is “normal”.
Invisible disabilities need the same recognition, compassion, and support as visible ones.
You really can’t judge a body by the way it looks.
