The Pressure to Be Extraordinary When You Live With a Disability

Recently I have been seeing a counselor with my husband. He began talking to us about the need to plan. And as soon as he said that, my heart sank. I could feel the tears well up in my eyes and that all too familiar lump in my throat.

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

I don’t plan. That’s all I could think. He went on and on about needing something to look forward to, and that having goals to aim towards was especially important given my “situation.” I just kept sinking and sinking.

Truth is, I used to be a meticulous planner. Every part of my life was planned out to a T. Then my health spiraled out of control and I couldn’t face planning anymore. By now I should be finishing up university. When that plan didn’t work out, I should’ve been working part-time. When that didn’t work out I’d be a housewife. Now I’m lucky to cook one meal a week without help. Planning literally makes me feel sick. That, on top of the constant worry that the government can take my money away at any moment, doesn’t really make me feel like planning anything in my life.

He then continued to tell me stories of people he found inspirational; a man with no arms could write with his mouth, a lady who was blind could play four instruments all by feel and sound alone and a few others I probably blanked out of my memory. He kept on and on about how it amazes him every day that people can be going through unimaginable situations and still be so inspiring.

This counselor wasn’t the first and certainly wont be the last to compare all
disabilities under one umbrella, but it got me thinking about how little most people understand about disabilities and how they affect people in so many varying ways. I have Ehlers-Danlos syndrome on top of a few other conditions, and if I play an instrument for more than five minutes I usually dislocate something or become so fatigued I need a nap.

It is sad that in 2019 we still live in a society where people hear disability and think everyone will be the next Stephen Hawking. There is such a pressure on people with chronic health conditions and disabilities to be inspiring and extraordinary. Sometimes just getting out of bed in the morning is an extraordinary achievement.

Just because one person has the capability to do great things does not mean you are obligated in any way to do anything other than live the best life you are able to. Society needs to change, not you! This doesn’t mean you should try and live the “easy way.” You should always try and push yourself to be the best version you can be, but that doesn’t mean you need to be a CEO of a multimillion pound company or running marathons. Do your physio, try to get your body into the best place it can possibly be, but more importantly than all of that, just be the best you that you can be.

Always remember that in this life with so many misconceptions about living with a disability, it is OK to be ordinary.