Wednesday, 5 August 2015

The can't-can-can't-can of variable conditions

I saw the recent news article about a girl who gets called a 'fraud' because sometimes she uses a wheelchair and sometimes she doesn't - see here for the BBC News article.

I've experienced this first hand too. It's really frustrating and upsetting. (And I happen to have the same condition.)

But to make it worse...I can understand why people think that...and I'm not sure I wouldn't think that too if I didn't have personal experience of variable, invisible conditions.

So I decided to make a simplified version of my decision process in case it helps people understand why I can do something one time and not another.



This doesn't take into account my balance issues, which mean that things moving in my line of sight are likely to make me lose my balance.

Nor the consideration of whether to use crutches, wheelchair, knee braces, or try using just my legs - which is affected by which joints are playing up in which ways, coordination levels, fatigue levels, what I need to do tomorrow and more.

Nor that walking and keeping all my joints in line is like tightrope walking - and equally fragile.

Nor the 'lycra factor' - am I able to wear my lycra compression stuff (helps with my poor proprioception and reduces blood pooling and POTS symptoms) - and am I likely to manage to take it off again at night without injury.

Nor the fact that the situation may change half way.

Nor whether help is available if it goes pear shaped.

Nor a load of other things.

So yes, you might occasionally see me walk 5 metres looking absolutely marvellous, or get out of the car and walk to the boot and  but you won't see the concentration and effort, or the after effects.

Similar decision making processes apply to all sorts of everyday activities.

And I suspect that people with a range of conditions causing chronic pain and fatigue go through variations of this decision process.

So if you see someone 'looking fine' one minute and 'looking disabled' the next, remember it doesn't mean they are 'faking it', it might mean that they have a complex condition that they are doing their best to manage.

[1/5/2016 Edited to add: Due to popular request, a more generic version of this image (see below) is now available as a poster from Stickman Communications ]



6 comments:

  1. yes, yes yes another awesome blog post.

    I'm much better off than you are physically, but I still go through this process as to if I should use my wheelchair or walk it.

    I confuse the hell out of my neighbours who some times see me put my dog in the car boot and sometimes a wheelchair.

    But walking on soft ground is a totally different experience to hard ground for me!

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  2. Fantastic post...I often get the very same, living in a bungalow and varying days of using varying aids I am sure my neighbours think I am a fraud- but I hold onto to the fact I know myself and my condition which goes a long way to helping me feel ok about it- even on those rather tough days when people make thoughtless comments I remind myself, they don't know me, my life or conditions...and have something chocolatey whilst I wipe away the tears and cuddle my cats lol xxx thanks again xxx

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  3. Awesome post. Absolutely brilliant. Will be sharing everywhere.

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  4. Oh yes - this is absolutely true for people with ME, too, especially the bit about the situation changing halfway! And there's never a bench, so I end up sitting on the ground waiting for my partner to go and get the car and pick me up.

    Normally I'm mobile enough that I don't need my own chair but I often borrow buggies when I go to visit gardens, and then I want to get up and take photos, which always gets me funny looks from passers-by.

    In fact, I've been wondering for a while if you could do a card along these lines? - something like
    "Like many users of wheelchairs and mobility buggies, I can walk a little way, so please don't be surprised if you see me get up and walk about. I need my chair or buggy because I cannot sustain the ability to walk over any distance, I cannot manage slopes or hills, and if I try to stand still I tend to fall over."

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  5. Yes! Then there's the 'am I going into a large, crowded place lit by fluorescents which will rob me of the ability to think coherently if I am also trying to walk?!' Supermarket shopping was my first reason for getting a wheelchair. Thankyou for your wonderful graphic clarifications, Hannah!

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  6. That's a big question for me too, Sally-Ann - and all the stimuli in shopping centres make them even worse for me than supermarkets. I can walk for 2 miles in the countryside, I can just about totter round a supermarket if I don't need to think coherently for the rest of the day, but if I go in a shopping centre I get about 2 yards and then my legs turn to jelly and suddenly I'm sitting on the floor wondering how I'm going to get out again ::)

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