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The Reality of Wheelchair Usage in the Chronic Illness Community

Updated: Aug 9, 2018

By Michelle | @EhMichelle | August 4, 2018

The Reality of Wheelchair Usage in the Chronic Illness Community

When I was given my first wheelchair prescription a year ago, it was an exciting time. It meant freedom. It meant I would be able to do so much more of the mall when my legs didn’t want to. It meant I didn’t have to feel like I was going to pass out when I was done shopping. When a wheelchair is prescribed as a tool, it feels like a victory in a way. Life is going to be easier now. Your fellow chronic illness friends tell you not to be embarrassed, and that this is a tool you deserve. That’s what it was like when my first custom wheelchair was prescribed. 

But what about when you’re sentenced to your chair? What if you don’t have a choice? What if you can’t say “Meh, I don’t feel like using it today”? That feeling of gratitude for your chair can quickly change into resentment. 

Recently I began having full body spasms that have caused me to fall over multiple times and hit my head. It was determined it was no longer safe for me to be ambulatory for the time being. And I was prescribed an electric wheelchair. Only this time it didn’t feel like any sort of tool or thing to be grateful to have. I felt angry at the thought of it. And then life was different. For the moment, I am a wheelchair user. And unlike before, I feel a bit of a sting in the belly when I say that. 

I’m going to be real. I’ve looked at wheelchair users and admired their courage. But I never really thought about the other type of wheelchair user. The type who doesn’t have a choice. The people who are stuck to their chair. And I didn’t realize that in that situation, you need a period of time to grieve. To grieve your previous life, and to slowly accept your new one. And I’m not saying that life in a wheelchair can’t be just as amazing as life standing up! But going from standing to being forced to sit all the time; it’s a huge change. 

Things hit you in the face when they happen for the first time. Trying to try clothes in the fitting room of a store on while you’re stuck to your chair when you’re shopping. When you’re in a bathroom for the first time and realize that there’s no wheelchair button, that there’s no way for you to open the door, and that you’re the only one in there and you’re stuck. Yes, this happened. A kind lady who worked at the market I was at saw me looking for a wheelchair button on my way into the women’s room. She graciously held the door open for me. But little did I know she was locking me in there unintentionally! (At least now I can laugh about it.) I went to the washroom, washed my hands, and went to leave, only to find out there was no button to automatically open the door. The design of this bathroom had me trying to open the door, while sitting in my chair, and trying to turn a tight corner.

So though I didn’t stop trying, I ended up having to wait to be saved by the next person who had to use the washroom. Thank you to the kind lady who accidentally stumbled upon my rescue.  A humbling experience if anything. 

So right now I’m in between the stages of mourning and acceptance. And I’m hoping with everything I have that soon I will no longer be a high risk for falls and my health improves. But for now, this is life. 

And so here’s a note to myself: You didn’t ever expect to be here in this situation. Things will be a little different from here on out. So take your time to grieve the health that you’ve lost. Take time to be angry at where life has taken you. But also acknowledge the new opportunities this chair can give you. Know that your life can change for the better now. Know that this doesn’t mean the end. It doesn’t mean you’re giving up on anything. It means you’re moving forward despite what life has handed you. Look at the stories you post on Chronic Love Club by people who are not only living, but THRIVING, in their wheelchair. This is going to be an adjustment, but it in no way the end. 

Michelle was diagnosed with Type 1 Diabetes at the age of 12. After being stuck in the nightmare of being a mystery for several years, she is now finally being treated for a rare neuromuscular disease called Stiff Person Syndrome. This blogger also lives with Dysautonomia, Endometriosis, and a few more, and loves raising awareness. Co-founding Chronic Love Club with Derek has been the highlight of her year, and she truly believes that we’re better when we stick together.



Instagram: @ehmichelle

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