You don’t look sick.
Pain and fatigue can be invisible to others. And because sometimes we have good days, sometimes bad, it can look to others like there’s nothing really wrong. But invisible pain is still pain. I urge you to listen to your own body and not to anyone else.
All your tests were clear – there’s nothing wrong.
Blood tests, MRIs and other diagnostic tests often come back clear so doctors dismiss our symptoms and tell us there’s nothing wrong. But that doesn’t change the fact that you still feel unwell. Not being heard by your doctor can be stressful. Just know you’re not alone and you can still take action to alleviate your pain.
You’re too young to have this much pain.
Pain can start at any age. Hormonal changes in puberty can often be responsible for the onset of symptomatic hypermobility. EDS and HSD cause pain and research shows it is one of the first symptoms to present itself. Knowing this can help you if you’re dismissed for being too young.
There’s nothing we can do for EDS – you’ll just have to live with it.
It’s true, there is no cure for EDS or HSD but there is plenty we can do to manage the condition and improve our quality of life. Being dismissed in this way can be extremely damaging. It doesn’t matter where you are today, there is always something we can do.
You have low Beighton score so you don’t have hypermobility.
The Beighton score measures joint hypermobility but it only looks at a few joints in the body. It does not give a full picture of a hypermobile body. Just because you have a low score does not mean you are not hypermobile.
I’m hypermobile – does that mean I have EDS?
Some people are hypermobile and have no symptoms at all. Gymnasts, dancers and athletes are often hypermobile, and this can help them in their chosen profession. Hypermobility does not mean you have a connective tissue disorder.
EDS is more serious than HSD.
One is not more or less serious than the other. Hypermobility Spectrum Disorders can be just as debilitating as Ehlers-Danlos Syndrome. Both require appropriate care and management.
You’re a hypochondriac – it’s all in your head.
There is nothing worse than being given this label. Our pain and seemingly unrelated symptoms are very real. They’re not in your head. There has been far too little training and research in EDS and HSD. That is why it’s so easy for this to be dismissed. Medical training tells doctors ‘when you hear hoofbeats, look for horses, not zebras’. In other words, doctors look for the obvious diagnosis, not the unlikely one. But our pain can be unlikely. We’re zebras. It’s why I am proud to be an advocate for this community to raise awareness and prevent this misinformation. It’s why I created The Zebra Club app.