Stairs or stares? Obstacles to using a wheelchair with invisible illness

Ella Sumpter talks about fluctuating mobility levels and reactions to her wheelchair use

I have been given a power wheelchair that used to belong to my wife’s grandfather. I am very grateful. It will be very useful when I have to go to the local shops, or be somewhere where I am expected to stand around or stay on my feet a long time. It will also mean that I can go to protest rallies which I have so far been left out of.

An empty power wheelchair waiting to be used

I have a problem though. I have a very large psychological barrier to actually using it.

So what is the problem stopping me using it? Put simply, fear. Fear of what people will think and say, and embarrassment at people seeing me in it. I’ve already blogged about using a walking stick and my fear of abuse as well as fear of people thinking I use a stick to look more ill and claim extra benefits.

With the powerchair I have an additional fear that people will think I am trying it on because they have seen me walking. My neighbours will have seen me in various different levels of health; on my best days they have seen me stand for a couple of minutes talking, and stroll across to the car park, get on my motorbike and ride away. More often, they have seen me walk using a stick, sometimes leaning on it more heavily than others. Now, they will also see me leave the house in a chair. To people that know me it is obvious that I have a variable condition that leaves me less able to move or stay upright the more tired I am or the more pain I am in.

To people that see me away from the house, I worry that they won’t understand this and will simply think that I am faking my illness to get money from the government. I also worry about abuse if I stand up from the chair for a bit – I don’t have to stay in it all the time, but some people seem to think if a person can walk at all then they should always walk.

I also have a problem using the wheelchair, and, indeed, the stick, because I tend to be stubborn about what I can do. I start out in little pain and able to stand and walk, so I insist on going out without mobility aids. It doesn’t take long for me to start falling over because of exhaustion and pain though. Sometimes I can manage more than other times, and so I can quite often be capable of walking to the village shop, perhaps with a stick, and maybe walk back again too without too much pain, but the payback afterwards is high. I should use a wheelchair in this situation because that way I won’t exhaust myself just from going out to buy milk and won’t have to spend such a long time resting to recover.

Today I took my new powerchair out to the local shops for the first time. It’s not far, just five minutes walk away, but it’s a big step (roll) forward in making myself use the chair. I was worried through the whole journey, worried about what people would think, but I think I am getting there. I intend to use the chair to make local trips a few more times, and then I will take it out to a protest.

I hope I will get over my fear by then.

by Ella Sumpter. Ella blogs at and is on Twitter @latentexistence

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This Post Has 5 Comments

  1. Hi Ella

    I can understand how you feel but believe me from someone in a similar situation the independence and freedom the powered wheelchair gives me is well worth the stares. You are starting the right way with short trips but I suspect before long you will be venturing further. I walk around the house and go out in the back gearden on foot but use the wheelchair whenever I leave the house. This response may amuse you. The postman asked me if I had a twin when I answered the door (on foot) as he had seen someone looking just like me wheeling around the town.

    If you are in a wheelchair you get more responses in any case whether or not you use it all the time. Even in London strangers talk to you usually being friendly.

    Anyway good luck and I hope it works out well for you! xx

  2. I to struggle to come to terms with using a mobility scooter
    Part of me does not want to admit to my disabilities
    And as you stated its what people say & think
    They can’t always see the pain you go through to try to stay able bodied & the toll it takes on your body
    And a part of me is pride
    God bless you & all those that struggle like you.

  3. Cannot see much that would count as suspension on the powerchair and shook around counting the cracks in the pavement will not help the aversion with using it. Only by lived experience will what must be done become obvious.

  4. Hi Ella. I sympathise greatly with youover this issue as I too can walk and stand a bit but need a wheelchair for most outings. I actually embrace my wheelchair for the freedom it gives me and I must say have found most people in general to be understanding and helpful towards me when I use it. I always try my best to “give way” to pedestrians if possible, or else apologise if I can’t and it has never been unappreciated in my experience. To overcome the issue of getting out of the wheelchair (I need to stand frequently), I made it a point to carry a walking stick clipped onto the chair itself so people can see that I can walk a bit and no-one has ever commented to me. hope this has helped.

  5. Ella, forgot to add that the walking stick is clipped in 2 places, ie a bottom rail and near a handle (aka cane) top, so it sits virtually verical and is therefore nicely visible.

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