Hidden disabilities are no joke (Picture: Getty/amana images RF)

If you were anything like me at school, you were probably praised for being incredibly bendy or double-jointed. We were the gymnastics teachers’ dream, those who could do the splits well into our late teens.

But, what happens when this supposed super power becomes a problem?

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As I got older, I started to trap nerves in my neck and shoulders, which resulted in almost monthly trips to the hospital.

And I experienced nasty but seemingly unrelated symptoms, such as severe gastric issues and partial hip dislocations.


None of this made any sense to me or the doctors, until I met my friend Cleo*.



Cleo, a healthcare professional, was also a bendy kid, though far more of a high-achiever than I ever was.

She was a semi-pro gymnast with clean sweeps in national competitions until one day, she realised that what was helping her sport might be what was hindering her in everyday life.

Cleo had been diagnosed with Ehlers-Danlos Syndrome (EDS) and later, so was I.

But, what is this strange illness and why is it important that we talk about it?

There’s more than one type of EDS

EDS comes in many forms – 13 variants have been discovered so far – but the common factor for all of them is something called connective tissue.

Think of this connective tissue as the glue that holds your body together; we have it in our joints, between organs, and anywhere we need to bind our bits into place.

EDS causes that connective tissue to become fragile or weak, which means parts of your body aren’t as strong as they should be.

To put it simply, for a person who doesn’t have EDS, this tissue is as tensile and durable as a rubber band, whereas the connective tissue for people with EDS, such as myself and Cleo, is more akin to that of three-hour-old chewing gum.

Cleo and I have Hypermobile EDS (hEDS), which means the area most affected in our bodies is our joints.

Far from being just extremely flexible, Cleo is so supple that her joints will often painfully dislocate without warning.

You’ve never had a proper night out until you’ve witnessed her shoulder pop out, and then watched her push it back into place, against the bar.

Jokes aside, EDS dislocations can be serious, if not very painful.

Those who suffer from the condition have to be constantly aware in crowded spaces, in case someone knocks their arm out of place or a bus takes off too quickly, causing a hip or knee to pop out.

Being super flexible has its downsides (Picture: Getty)

What are the symptoms?

Are you bending your thumbs back and forth, wondering if you might have EDS too?

Though diagnosis of this disorder is on the rise, it’s more to do with us being better at spotting the signs now, than more and more people having it.



It’s generally thought that you must have some genetic predisposition to the disorder for it to occur, for instance, if a family member has also been affected.

As I mentioned earlier, there’s a whole host of symptoms and people may experience all or only some of these, including joint hyper-mobility, joint pain or clicking joints, extreme tiredness or fatigue, and fragile skin.

Patients may also present with extremely soft skin, which is much more stretchy than the average person’s skin.

Something that isn’t discussed enough is the chronic pain that can occur. One in 10 people present with this particular symptom and Cleo is one of them.

Her particular diagnosis was fibromyalgia, a linked illness where nerves are sent confusing signals, which cause them to fire off as though they’re constantly getting pinched.

This can lead to days or weeks in bed, with only short trips outside, as even the wind can be painful.

How do you get diagnosed?

EDS is still relatively rare, and getting a diagnosis can sometimes be a long path.

If you are worried and feel that you’re experiencing symptoms, you should first speak to your GP. The doctor will most likely refer you to a rheumatologist or joint specialist, who will then rule out other disorders first.

Once that has been done, you could either be diagnosed or asked to attend a genetic screening. Every case varies.

It’s important, however frustrating it may be, to stick with your appointments and chase up results until a diagnosis has been reached. Then, you can start taking steps to care for yourself.

How do you treat EDS?


Like many chronic illnesses, EDS treatment is more about management, than a quick fix.

With proper management, most people with EDS can live fulfilling lives, but it may take time to find out what works best for you.

Try using a foam roller, which is great for working out kinks and sore backs. A hot water bottle or heat pads can help joint pain and ice packs can help sprains from overstretched muscles.

A transcutaneous electrical nerve stimulation or TENS machine, can be used for severe pain; small pads are stuck to the affected areas, and deliver electrical impulses to block the nerve signals. These can be bought from your local pharmacy.

Kinesiology tape can be applied to joints or problem areas to help strengthen them and give support when you need it.

Symptoms from EDS can change from day to day, from moderate to severe. If you’re friends with or caring for someone with EDS, checking in on their symptoms may help.

If you’ve just been diagnosed, self care and listening to your body can go a long way to help ease some of the symptoms you’re feeling.

We need to talk about the condition

We also need to start talking about conditions like EDS, because people with these hidden disabilities rarely get the help or support required, as the symptoms are not outwardly visible.

Comments often thrown at people like myself and Cleo are ‘you’re too young to be disabled and in that much pain’ or pithy remarks like ‘suck it up’.


Far beyond being just unhelpful, these comments can be downright damaging and could put sufferers off from seeking help for fear of not being taken seriously.

We can all make a change to this though, by listening when someone explains their issues and taking a few minutes to look into it, so that we can better care for them.

Hopefully, with more education and compassion, people like Cleo – and every other person with a hidden disability – will be able to live a happier, more supported life in the future.

*Cleo is a pseudonym.

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