I'm a zebra!


No, really, it’s true. I don’t mean I eat grass, live in Africa and I’m covered in stripes, I mean people with EDS are called zebras.

It supposedly comes from a saying used in teaching doctors. When you hear hooves think horses not zebras. Look for the common cause for the symptoms, not the exotic. And in most cases it’s true - a sneeze will be hayfever or a cold. It won’t be a rare tropical disease unless you’ve been near an outbreak of it.

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But people with EDS are the exception. We are the zebras. Our illness is thought to affect one person in every 5,000. Although being genetic it runs, or is that gallops, in families. If a parent has it, most likely so will the children and grandchildren and cousins and…

It means there is very little research done, there are pretty much no EDS specific medications, aids or anything else to help us with our particular problems. There are also no skincare or makeup brands specifically aimed at us. We have to adapt things from elsewhere to work for us.

There is another reason to call us zebras, though, a vivid one that I later came to embrace but that crippled me in my teens.

As we grow our skin stretches. For most people it does it seamlessly, leaving not a mark. With EDS it means you start your early teens with a bright red or purple set of stretch marks on your arms, legs, back, bottom, anywhere that expands or lengthens gets them! It’s horrifying to be 13 and covered in these tear marks that shouldn’t happen until you get pregnant. They are normally associated with sudden weight gain or weight loss, but for EDS children it is simply growing bigger, and although they mostly arrive in the teens with a growth spurt they can start earlier if the EDS is really bad.

It’s heartbreaking. No shorts or short skirts, sleeves all the time, high collars, all trying to hide the marks. You end up looking like a Victorian not a modern teenager ready to have fun.

It may seem frivolous when you have a disorder that leads to cancers, amputations, arthritis, severe chronic pain, disability, life limiting and sudden death to spend time thinking about skincare and makeup, but these are two things we can do to make ourselves feel better and improve our self confidence very easily. They add quality to what can be very difficult and unhappy lives from an early age, and especially during the teen years when those stripes turn up.

Self care and self love when you are struggling with an invisible disability that even your doctors don’t know about are incredibly important. They can be the difference between carrying on with your life or deciding to step out of the picture completely.

EDS affects the structure of our brains, too, giving rise to depression and much higher instances of autism and ND. These are all things that include an increased risk of suicide. Put the pain and stripes on top and life can seem like too much of a challenge. If looking after your skin, learning to cover up marks or being able to paint a better picture on your face can help with our state of mind, give us a lift or make us feel better about ourselves then we absolutely deserve to give it a go. It becomes the opposite of frivolous, it becomes essential. ♥️