My invisible illness and disability are just as valid as a visible one… so why do I feel as though I have constantly validate it to complete strangers?

Since being diagnosed with Ehlers Danlos Syndrome I’ve had to overcome a lot of challenges and massive lifestyle changes. It’s been really hard for me to go from the girl who works/studies full time, runs several times a week and goes skiing, to needing assistance with day to day life and requiring the use of mobility aids. It’s taken me a long time to adjust to needing crutches to get around and a wheelchair for longer distances, but as it turns out, self acceptance is only half the battle.

I’ve recently got back from a holiday to Kefalonia in Greece, flying from Manchester Airport. I received an invisible disability lanyard on arrival, this signaled to staff that I needed extra help. Personally because of my hip pains and my PoTS I struggle standing in queues, I get really dizzy and have previously had to sit on the floor so I don’t risk falling or even fainting. The lanyard also meant that I could get a wheelchair to get me to the gate as some of them are a long distance away from the lobby hall and shops. This was amazing, the staff were so on the ball and I would recommend one to anyone with an illness/disability.

Me in my sunflower lanyard waiting for the plane

As I’ve said previously I couldn’t fault the staff at either airport, other passengers however are a different matter entirely. Being pushed through the airport by my Dad while carrying my smart crutch, people showed complete disregard and awareness for me sitting there. Barging in front of me with prams and cases, at one point I almost took a handbag to the face. Like hello, human being down here. Apparently some people have clearly never seen an ambulatory wheelchair user, as I got shot a few looks as I got out of it and dared to walk a few feet with my crutch. News flash: I’m not faking I only need a certain level of assistance. This was all nothing in comparison to the trouble I had waiting for my return flight.

Kefalonia airport is only small and so upon check in I put my lanyard on and walked with my crutch into the terminal. The rep seen me and took me to one side to the assistance desk to get checked in. On arriving to the assistance area, all the seats were occupied and I was clearly struggling standing. The rep asked who was there for assistance and half of them obviously were not. On being asked to move to some different seats outside, one man gave both her and us a glare and said it was too hot outside and he’d rather sit in there. Eventually he moved after some grumbling and groaning and looking at me like I’d threatened his family or something. Such an inconvenience to have to move for someone with a disability, when maybe your common decency should already be hinting for you to do that.

As usual people in the queue are not happy when our bags get checked in first. As the airport is so small and crowded, I thought I’d leave getting a wheelchair, find a seat in the departure lounge and just walk with my crutch. My Dad was going to get us some food from the cafe while me and my Mum waited, not one single person had the common decency to offer me a seat. My crutch isn’t small, it’s big, bulky and near impossible to miss. To add insult to injury a seat in front of me became available, as I hobbled over a woman about my age ran in front of me and took it just turning the other way. Now while I may not look that sick, I am and constantly in pain, surely having a crutch is an obvious symbol that I might need to sit down more than you. My Dad did make a comment, but she just couldn’t care less.

Finally boarding the plane, anyone with pushchairs or needing assistance to board is called first. I go over and join a queue of wheelchairs/walking sticks, as I get to the front, a woman shouts the queue is over here. She’s signalling to a sea of fully abled bodied passengers in a line. She half laughs sarcastically, at which point I start panicking and questioning myself as to whether or not I need to be in that queue. Do people think I’m faking and pushing in? I start showing her my crutch, but really why is any of this anyone else’s business?

I’ve had people make comments and question me previously if I actually need my crutch because I’m young or don’t look sick enough, but this genuinely made me feel the most uncomfortable I had in a while. It was to the point I wanted to leave the queue. You wouldn’t question someone who was older, so why do you find it acceptable to question me? Just because I don’t look like the image of a sick/disabled person you incorrectly have in your mind. Disability comes in all shapes and forms, we all require different levels of assistance, please stop making us feel like we have to justify ourselves to you.

I’ve lost count of the number of times I have been asked what I’ve done to myself to injure my legs. It’s frustrating being asked by the same person on more than one occasion when you’ve explained to them you have a medical condition. Different days require different aids, I have bad and better days, I’m not any less sick for not needing my chair, maybe my pain levels are just a bit more manageable. No it’s not miraculously going away, so will you please stop asking me when I’ll be well again. I’m not too young to have this condition, it didn’t ask me for ID. I am happy to discuss my medical ailments with people to some extent, I’m always trying to raise awareness for Ehlers Danlos, but at the same time it’s my body and my business. Especially when it comes to how much I’m willing to share with you. I shouldn’t need to talk in depth to strangers, discussing my issues to get your help, understanding, a bit of compassion and human decency.

2 thoughts on “My invisible illness and disability are just as valid as a visible one… so why do I feel as though I have constantly validate it to complete strangers?

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