Wednesday 14 November 2018

When your "invisible" disability becomes "visible"

I thought that this weeks blog post would be based on using a mobility aid in work, my experiences and how I tackle unintentional ableist comments. So just to give you a little bit of background info, 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 organisation and you have an invisible disability it is kind of hard to make it visible for everyone.....unless you start using a mobility aid.


A few of weeks ago, I had 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, the next time i try to do that it subluxes again. Not only is this causing me a lot of 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 that would help and 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 what I had in the previous weeks, and didn't feel like I was going to fall over all the time.

On the plus side, I definitely have some amazing colleagues who weren't afraid to joke here and there with me, or as I am now known as "Hop-a-long" (which I absolutely love!)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 humour. 


Overall, it has been such a positive experience for me and it helped my condition so much! I definitely wont be resisting using a mobility aid in 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 when in fact 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 what is wrong with me 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 with someone you have never even met before? The response I usually have is an awkward "awhhhh.."


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


Sophie

xx 

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