The 'Look' I Get for Being an Occasional Wheelchair User

I have ME and I’ve been using a wheelchair for 15 years. I don’t need it all the time. I don’t actually like using it as I get very stressed: the loss of autonomy really gets to me and the crowds of people looming above me makes me panicky. However, if there is any prolonged walking involved or I am especially ill/exhausted then I have to use it.

Now my legs do work, so I can get out of the wheelchair if a curb proves tricky or there are a couple of steps. I can also get out to walk around a shop for a couple of minutes or walk to a table in a restaurant. But this is where the issue lies.

When I do get out of my wheelchair for any of these reasons I get “the look.” The look that tells me I am regarded as a “faker” or “lazy.” They look at my poor husband having to push a lady in a wheelchair when she can walk.

 

I see the surprise on people’s faces when I turn up for an event in my wheelchair when previously they had seen me standing. If I go to an event where there is seating around me, I am confident with standing as I can sit down whenever I feel like it to recover, then stand up again. If I know there is going to be no seating I will go in my wheelchair, as I need to be secure about my surroundings and my ability to cope.

The other thing is when my husband does try to negotiate a tricky curb, sometimes, just as I’m about to get out of the wheelchair to make it easier, a well-wisher comes along to help and lifts the wheelchair. Of course I am grateful, but also mortified. I’m then too scared to get out of the wheelchair in case that person sees me and wonders, what just happened? Why did I have to lift a lady who can walk?!

I need the wheelchair, just not all the time. I can’t use a mobility scooter as I can’t concentrate on navigating and it would tire me out being in charge of it. I need to always have someone with me looking after me and sometimes they have to push me in a wheelchair. The world isn’t black and white. It isn’t divided into wheelchair users and non-wheelchair users. There are the occasional wheelchair users, and please remember there is probably a very good reason why that person needs a wheelchair at all before you judge.

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