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The Anxiety That Comes With Using a Wheelchair for the First Time

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My birthday is coming up this weekend and I’m terrified. Not because I’m getting older, which is scary enough on its own, but because my boyfriend wants to take me to an amusement park – and for the first time I need to publicly defend my invisible disability and stand up for myself to get the assistance I need.

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

I’ve never used a mobility aid in public before because I am able to walk, but I get fatigued very quickly. Typically I only go places where I know have plenty of seating and minimal walking, but an amusement park is all walking and standing (most of the time with no shade cover or personal space) which triggers a flare-up for me. I don’t look disabled, and most of the time I have a very hard time referring to myself as disabled, even though that is my situation.

I’m having so much anxiety over the logistics of visiting a theme park with Ehlers-Danlos syndrome and fibromyalgia. I keep stressing over whether or not I should bring a wheelchair to keep myself from becoming fatigued, or if I should bring a walker and stand in line with everyone else even – though I know l will be fatigued within an hour or two and have to leave.

The thing is, I know that none of this should matter. I know that I should do what’s right for me and not worry about what strangers are thinking about me. This is my first time having to make this decision, as my symptoms and pain have been only increasing to this level within the past year, and I honestly never understood what was so difficult with going out in a wheelchair if you need it. My grandmother has needed one to leave the house for extended periods of time for years now, but she would rather stay home than go outside and be seen in a wheelchair. I finally understand the anxiety of not knowing how to be yourself in this new situation, and how to deal with people who stare – and even harder, the people who decide they need to step in and ask why you’re in a wheelchair and become judge and jury on whether or not you are “disabled enough” for assistance.

I’m still not sure if I’m going to go to the amusement park. My boyfriend said it’s completely my decision, whatever I’m comfortable with – he will back up 100 percent. I’m lucky to have someone there to support me, even when I don’t know how I need to be supported. I know this is just the first of many outings I will need to use a mobility aid for, and I need to get used to standing up for myself and doing what I need to do for my body and my health rather than worry about the judgement of strangers. Here’s to being “zebra strong” and doing what I feel is right for my body.

Getty Image by Halfpoint

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Originally published: June 10, 2018
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