What I Wish People Understood About Having Hypermobile Joints and a Chronic Illness

For a decade and half now I have been sick, and for the same amount of time I have been constantly asked “What is wrong with you? You seem fine.”

The answer I have always wanted to give to this specific question has always been the same: How can you tell me that my sickness is what you call ideal? Nobody can see the copious amounts of medication I am on, the constant pain I am in, nor the countless days (and nights) I spend just crying because there is no relief from the awful pain or the stress that having an invisible illness gives to you.

I meet so many people who ask me, “Isn’t that just being double jointed?” followed up by a, “I would love to have that, it’d mean that I could bend into weird positions!” But no one stops to think about the limitations it can cause for us.

Five percent of the “healthy adult population” has one or more hypermobile joints, which means nearly 400 million people are able to move their joints out of a normal range – but most of the time they won’t notice because it doesn’t cause them any pain. That is where being hypermobile and having a chronic and debilitating illness is completely different.

Many famous people have hypermobile joints which work in favor of their professions – including Olympic swimmers, dancers, gymnasts and even musicians. (Honestly, just take the two seconds to Google it!) But just because I am unable to work or do seemingly “normal” things, doesn’t mean I am lazy. I can barely walk down my own road because my joints are popping out all over the place, yet everyone I meet seems to be fascinated only with what weird positions I can get myself into.

I wish somebody would just take the time to listen to my screams and cries for help.

I wish somebody would ask me how they could make me more comfortable instead of telling me to feel better.

I wish that I could tell myself I will one day be magically cured.

But one thing I will never wish for is recognition; we have to make that ourselves. If anything, I hope every person reading this no longer feels as defeated by their illnesses or limitations – and that you are slowly becoming your own advocate because no one else is going to be.

Use your experiences as a sick individual to educate somebody else, continue telling people what you can and can’t do, and spread as much information about your illnesses as possible. Nobody can ever be sure about how well something they are doing will be received, but you deserve to let the world know about what you are going through – you have the right to voice your story.

One day I hope to be a part of a world that understands chronic and invisible illnesses, especially those that can affect younger generations too, but for now all we can do is share our own experiences.

Keep going. Please.

Image via Thinkstock.

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