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A Zebra's Battle: Living With a Rare, Invisible Illness

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One of the first things medical students are taught is, “When you hear hoof beats, think of horses, not zebras.” Put simply, the most obvious answer is usually right. This often is the case, however, as rare as zebras are, they do still exist. Not only does this make getting a diagnosis of a rare condition a long and difficult process, but the view “only the obvious is possible” can spill into public perceptions.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Is it all in my head?

Despite experiencing symptoms from childhood, I was 18 before I was diagnosed with Ehlers-Danlos syndrome – hypermobile type (EDS-HT). I had been experiencing pain along with partial and complete dislocations my whole life, however, every medical professional played it down and described it as just being part of who I was. Not only is EDS-HT a rare condition, but for the most part, the symptoms are invisible. When you combine a lack of awareness amongst medical professionals with a lack of visible evidence, you can feel like you are fighting a losing battle. I began to question whether the symptoms were all in my head.

But you don’t look sick!

This is one of the most common things people say to me when I talk to them about EDS-HT. This statement has often puzzled me. What does sick look like? Surely it looks different in every person. So where does our perception of what sick should look like come from?

If you think about the images of disability we see on a daily basis, they are usually the same – whether it is a parking space, an access door, or council-issued disability badges, their logos are all of a person in a wheelchair. Without realizing it, we have had a picture painted for us of what a person with disability should look like when in fact the image only represents a percentage.

Just because you can’t see it, it doesn’t mean it isn’t there.

People often don’t show compassion towards someone with an invisible illness. They can’t understand there is a real problem. As a result they question the reality and severity. Repeatedly stating, “I am in pain” leaves people feeling uncomfortable or thinking you are looking for attention.

So what is the solution? My solution to this situation is actually be part of the problem. I adopt the role of a healthy person, I act the way people think a “normal” person should act and make little or no reference to being in pain. This avoids any awkwardness or need for me to defend my condition or my right to be in pain. However, this in itself can be extremely exhausting and isolating.

Having an illness which is largely invisible does come with some advantages. With an invisible illness you can avoid a lot of common misconceptions. Unless I choose to disclose my diagnosis people are unaware of it, so when I discuss carrying out an activity nobody, questions my ability to do it. It is possible for me to paste on a smile and get through a day without anyone realizing I am in any pain at all. I can even usually manage my dislocations without drawing any attention to them.

There is a substantial lack of knowledge and awareness surrounding EDS-HT, not just across society but also within the medical profession. Despite being diagnosed for over 10 years, I still see doctors now who try to dismiss my symptoms and my diagnosis. The development of social media has opened up a whole new community to me. A community of other zebras fighting the same daily battles as I am. There are thousands of people with similar experiences to me, who have fought for diagnosis and support, who are not acknowledged by the people around them as having an illness. Being part of this community helps to deal with the isolation that comes with.

People with illnesses are wrongly seen as being weak and incapable. Those with invisible illnesses are amongst the strongest people I know. It takes a strong person to go about their everyday lives while dealing with numerous symptoms nobody knows about.

Awareness is key.

The most important thing you can do is to educate yourself, learn about EDS-HT and invisible illnesses.

Thinkstock photo by Peerajit

Originally published: April 24, 2017
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