Getting to Know hEDS

Growing up, everyone thought of me as a problematic child. I was constantly being accused of making excuses or lying or faking illness. In reality, though, I was going through more than they realised.

What is EDS?

EDS stands for Ehlers-Danlos Syndrome and it comes in many different forms. The form that I suffer from is called "hypermobility EDS" (hEDS) which means the joints in my body are more loose and flexible than they should be. EDS as a whole is a hereditary condition and those of us who have this "rare" disorder like to be referred to as "Zebras". I will be using that term from here on out. I will also be referring to my own experiences with hEDS but please know that most of what I say here can apply to other forms of EDS as well.

I often sublux my hips, ankles, shoulders and other joints while doing normal everyday activities. "What's a sublux?" you might ask. Well, a sublux is when a joint or ligament only partially dislocates. Sometimes it can be painful while other times it's just plain irritating. For example, it's very painful when I stretch and my left shoulder suddenly decides to half pop out of its socket. On the other hand, it's really irritating when my hip decides to slightly pop out its socket while I'm standing.

Living the Zebra life

One of the things that Zebras agree on is that we are prisoners in our own bodies. Picture a 28 year-old stuck inside the body of an 88 year-old. I would love to make plans to go out and have fun with friends, but my body says "NO" to that. Then everyone thinks I'm boring and don't have a life.

Another example of what life is like would be to imagine a tire with an invisible puncture. No matter how much you try to pump it up, it will always be flat. Likewise, Zebras constantly feel "flat" in our energy levels, no matter how much rest we get. I can guarantee you, though, telling us to try things like exercise, yoga, special diets and any other "remedies" you can come up with will just make us mad. Most likely, we have tried all that before, but it just doesn't work for us. This is a condition that no "band-aid" can fix.

Please don't judge us when we have to sit down because standing is too much. Please be understanding when we cancel plans we made on a good day because we're having a bad day. When I say having a "bad day" I don't mean spilling our coffee and losing our keys. I mean a bad flare up day. This is when we find ourselves in more pain than usual. Our joints are dislocating more and have worse inflammation than we do on a regular day.

The Zebra dream

Something we wish for as a whole is that people would start understanding what we are going through and to not try blame our physical state on the way we live. We didn't ask to be born this way and we aren't at fault for it.

I am thankful, however, that doctors are starting to accept hEDS as a medical fact. Even so, too many doctors have no idea how to treat patients who suffer from it. Doctors who specialize in hEDS are few and far between. I hope that will change in the near future.

Being a Zebra has its highs and lows. Over time, I hope to increase awareness on what it actually means to be a Zebra. I long for a world where I can know my friends and family will be patient and understanding and where doctors will take the time to find ways to make the lows more bearable. I long for an EDS friendly world.