When Your Invisible Disability Becomes Visible

I have been working for over a year, and only a select few know of my disability. This is not because I have tried to hide it in any way, but when there are few hundred people working at your organization and you have an invisible disability, it is kind of hard to make it visible for everyone — unless you start using a mobility aid.

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

A few weeks ago, I subluxed my left hip and it has caused me a lot of problems. Since then the joint itself continually moves when very little pressure is applied to it, and at random times too. So sometimes I could be doing something and it could be fine, but the next time I try it subluxes again. Not only is this causing me a lot of joint pain, but it is also causing me nerve pain in my left leg, sciatica, ankle instability and difficulty walking. After a lot of deliberation and seeking advice from people with EDS on Instagram, I decided to give a mobility aid a try.

I sent my parents up the attic to get my crutches as I haven’t used them in a few years, to see if they would help. Safe to say, it made a huge difference. After a few weeks of struggling I could finally walk around work with little pain in comparison to what I had before, and felt more stable in my walking. I could come home from work and found that I had more energy than previous weeks, and didn’t feel like I was going to fall over all the time.

On the plus side, I have some amazing colleagues who weren’t afraid to joke here and there with me, and I am now known as “Hop-a-long.” Although some people may be sensitive to this, I actually love it! I have explained my condition in great detail and they are aware of what I have to deal with. They are not afraid to see the funny side or have a sense of humor. Overall, it has been such a positive experience for me and it helped my condition so much! I definitely won’t be resisting using a mobility aid to work in the future — whatever that may be.

However, what I don’t particularly like is when complete strangers come up to me and start asking questions. Even though I work in the same place as them, I still find it slightly intrusive when people ask personal questions and I don’t even know their name! I try to remember that it is usually out of curiosity rather than rudeness, but I find it so hard to explain, as they are usually expecting me to say something like “I’ve sprained my ankle.” How do I explain I have a debilitating genetic condition that causes my joints to dislocate at random times to someone I have never met before? The response I usually have is an awkward “Aww.”

I struggled for weeks before finally using a mobility aid, and it was the best decision I could have made. It made my life so much easier, the pain and fatigue eased and it also made people realize I am disabled. When you have an invisible disability, I think it’s very easy for people to forget you are chronically ill and it’s so easy to feel like they don’t understand. For anyone who is struggling and is considering using a mobility aid — just go for it!