12th/13th/14th May; Making Our Invisible Visible: Why Awareness is SO Important.

I didn’t come up with the title for this one, ‘Making Our Invisible Visible’ is the tag line for the charity EDSUK. I think it’s a very important statement and something that needs drawing attention to; not all disabilities are visible. 

I am lucky in the fact that, so far, my EDS hasn’t affected me so much that I need to use a wheelchair, or walking sticks (often anyway) to get around. I do however have to wear othotic insoles and regularly need to tape up a combination of ankles, knees, hips and shoulders to enable me to go about my daily life. Unfortunately, unless you have x-ray vision and can see through shoes and clothes, these things aren’t obvious, and a lot of people presume that I am a perfectly fit and healthy 23 year old. And they (including some medical professionals!) often don’t believe me when I tell them I’m not.

In my day-to-day life this causes some difficult, draining situations. For example, last year, when I was studying at Keele University, I had just finished playing at the Lymelight Festival with the Keele Big Band and got on a bus back to campus. I was tired and sore and had my (quite heavy) saxophone with me, so I sat down. The bus was quite busy and soon there were no more seats. On gets a slightly older woman, no more than about 50 but still older than me. Now I was brought up well and, had I been having a good day, I wouldn’t have thought twice about offering her my seat, but I wasn’t having a good day and I needed to stay sat down. Unfortunately this woman decided that she was entitled to my seat. She didn’t even ask politely, she just came up to me and demanded that I give her my seat. I explained about my condition and that I needed to stay sat down, I even showed her my medic alert bracelet. Her response was something along the lines of “I don’t believe you, you’re just a lazy, disrespectful youth”. It was at this point that the gentleman behind me stood up and said that she didn’t deserve it but she could have his seat. I (obviously) thanked the man and spoke to him for a while, it turned out his sister has Lupus, another invisible condition. If it wasn’t for that man offering up that seat that situation could have easily escalated quickly. It also made me feel even worse than I already did.

This is in example of the kind of attitude those of us with invisible conditions have to deal with daily, not what we need on top of managing our conditions, and a lot of us just take it on the chin, but we shouldn’t have to.

This attitude can also have some more severe consequences. I can’t speak for others, but there are several occasions where I have had to fight to get the medical support that I need. It the main reason it took me around a decade to get a diagnosis. Some medical professionals didn’t believe me that there was anything wrong. Again, I see myself as lucky that I haven’t had many experiences where medical professionals didn’t believe me, but the EDS community is full of these stories, and this scares me. EDS is often misdiagnosed, leading to people having the wrong, or even no, treatment.

So next time someone tells you they have an invisible condition remember that they probably just want you to believe them! The more awareness people have of invisible conditions, the less we have to hear “but you don’t look sick!” (you won’t believe how often I hear this) and the easier it is for us to manage our condition.

Awareness is key, please spread it!

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