Using Mobility Aids When You Have An Invisible Illness

[I wrote this piece for The Huffington Post’s new ‘EveryBody’ campaign; see the original post here!]

“What happened to you, then?”

There’s no ideal time to acquire a long-term chronic illness, but becoming disabled halfway through your undergraduate degree has to be up there in the Least Convenient Life Situations list. Adapting to the student experience whilst learning to live with a painful and debilitating neurological condition isn’t a walk in the park, especially when your illness is invisible. At times, looking like every other person around me was a blessing, but more often than not, it led to some really problematic encounters. Like others in my situation, I’ve experienced all the usual judgments: people telling me I don’t look ill, I’m too young to need a seat on the bus, I shouldn’t be so lazy… the list goes on. Sadly, I was prepared for these comments. Those with invisible conditions have been facing these attitudes for years.

What I wasn’t prepared for was facing similar situations once I became a wheelchair user. Accepting that I needed a mobility aid at the ripe old age of twenty was difficult, but I naively consoled myself with the thought that at least now, maybe people would take my physical health needs more seriously. What didn’t cross my mind at this time, however, was that the person sat in the wheelchair still didn’t look ‘ill enough’, to satisfy the curiosity of the general public. During my first trips out of the house with George (the wheelchair; you always have to name the wheelchair), I was hyper-aware of the people around me. I felt people’s gazes on me as they slowly looked me up and down as if trying to identify my ailment, and I felt their shock and disbelief as I crossed my legs and they realised that no, I wasn’t paralysed. The thing that really baffled them the most though, and continues to baffle people today, was when I stood up from my wheelchair to transfer to a seat. The impulse to make light of it and exclaim ‘I’m healed!!! It’s a miracle!!!’ tempts me every single time.

Finding humour in these kinds of instances is my coping mechanism, but often this gives rise to its own problems. I recall one situation where I was viewing flats with a letting agent and my parents. I’d stood and talked to the agent for a few moments without my wheelchair and without mentioning my disability, but then climbed in my wheelchair that my dad had brought around, ready to view a property. Afterwards, I found out that the letting agent had been utterly taken by surprise by the wheelchair ‘because I seemed so cheerful’. They couldn’t get their head around the fact I was silently suffering, because I talked and laughed and smiled like any other person.

Another time, my best friend and I were out shopping, and laughing our heads off about something or other as she wheeled me around a gift shop. The shop owner took this moment to approach us and exclaim loudly ‘what happened to you then?!’. Now, this is a question I get a lot, and there’s no doubt in my mind that this is because people expect a funny story: I don’t look ill, so people expect a drunken fall on a crazy night out, or maybe some sort of temporary waterskiing accident. The problem is that I still haven’t found a way to answer this question without making the other person feel awkward. So when I replied ‘haha, long-term illness!’ with a polite little laugh, they looked like they wanted the ground to swallow them whole. ‘Well’ they replied, gingerly patting my arm and trying to salvage the situation, ‘at least you’re still smiling!’. Because obviously, people who are ill aren’t supposed to be smiling or laughing or having a good time. Unless, of course, they’re one of the inspirational sob stories that healthy people use to make themselves feel better. But that’s another issue for another time.

The point is that invisible illness is an ongoing issue that there can never be enough awareness of. Even when visible mobility aids are added into the equation, if you don’t appear to be miserable and suffering, or have an obvious physical impairment, people are inclined to doubt your condition. I hope with everything in me that one day this won’t be the case, and those with chronic illnesses, including those without mobility aids, will be able to sit in reserved disabled seats, or move their legs in their wheelchair, or God forbid, laugh and enjoy their life, without judgment from others. But for now, we need to do all we can to help the healthy population to understand; just because somebody doesn’t appear to be ill, it doesn’t mean they’re not suffering.

Are you an invisible illness sufferer who uses mobility aids? I’d love to hear other people’s views/experiences!

Find out more about my chronic illness story here!

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15 Comments

  1. August 9, 2017 / 7:02 pm

    I don't know if my disability is totally invisible as I do spasm but compared to when I was younger and used a power chair full time, I have found social attitudes much more challenging now I am sometimes ambulant and sometimes using crutches/ a wheelchair. The worst thing is how ashamed I feel thinking that people believe I am 'faking' or 'putting it on.'

  2. February 10, 2018 / 8:51 am

    I enjoy your writing Pippa. I hope you don’t mind me adding a link to your article from my site at http://www.York-ME-Community.org. Having had ME for nearly 12 years now, no real invisible stories come to mind, except that having bought a walking stick to hel with my balance, it took me 3 months before I got the courage to use it. Once I did, I found people so helpful in opening doors etc. Now I need a mobility scooter, and most people are still as helpful,, apart from parking over dropped kerbs ! Keep up the writing and hope you pay a visit to my site sometime soon !

    • Pippa
      Author
      February 22, 2018 / 1:21 pm

      Not at all Bill, thank you for sharing and for your kind words! I can definitely relate to the parking over dropped kerbs debacle, it’s one of those things that you don’t seem to realise how problematic it can be until you’ve experienced it for yourself!

  3. ChroniclyCurly
    April 27, 2018 / 5:19 pm

    I use mobility aides when I need to. I’m 45 and have had “Rosie” (my rose red wheelchair) for four years. I’ve been using a cane even longer. I get all kinds of grief for using the chair at concerts, amusement parks, festivals, anything that would require being on my feet for very long. I even had a lady comment once that next time she would rent a chair so she could get a good seat. Needless to say, my response was not very ladylike. Most days we struggle to get up and get out of the house, we don’t need to be reminded that we need a little extra help to do it.

    • Pippa
      Author
      April 28, 2018 / 10:45 am

      Very well said! So sorry to hear about your experiences with ‘Rosie’, but as you say, where would we be without them?! Thanks so much for reading, and hope today is as kind as possible to you xx

  4. April 27, 2018 / 9:29 pm

    I enjoyed this, it’s all so true! I was diagnosed with MS at 21 and now 26 and still struggle to deal with the hardships of an invisible illness. Loads of things can be annoying but I’d say my most regular and infuriating one has to be disabled parking!!!! lol I’m lucky I can laugh about it after though.

    • Pippa
      Author
      April 28, 2018 / 10:46 am

      Thank you so much for reading, Kim! Oh I totally feel you, if we didn’t laugh we’d just cry! Hope today is as kind as possible to you xx

  5. Kate
    May 2, 2018 / 10:17 pm

    I’m about to visit Disney World with my husband and kids and I suffer from CFS. The only way I will survive is by using a mobility scooter and I am apprehensive about the judgment I may get but I have to choose not to let it worry me. I almost want to get a big sign declaring that I have an invisible illness but then I figure I don’t owe anyone an explanation. I owe my kids an amazing time in Florida and the only chance I have of doing this is by accepting I can’t possibly walk miles (I can barely walk 100m) so I will be gratefully accepting the help of a scooter and maybe getting to cut a few lines 🙂

    • Pippa
      Author
      May 3, 2018 / 10:36 am

      Oh I hope you and your kids have the BEST time! I recently went to Disneyland Paris in my wheelchair and they couldn’t have been more accommodating: make sure you have good medical evidence and get yourself an access card, they’re absolutely fab. I can totally relate to your concerns though- I wrote a piece for Scope about how Disney made me question my disability: https://community.scope.org.uk/discussion/37004/disney-made-me-question-my-disability

  6. May 5, 2018 / 11:49 pm

    Love your writing 🙂 I struggle to understand why strangers think it’s totally OK to ask personal questions of disabled people – I think I’m going to have to come up with some great one liners, involving alien abduction or super hero punch outs! Thanks for explaining why people in wheel chairs can sometimes move about. People have set ideas about things they don’t understand and it’s hard to break them out of it.
    Lowen @ livingpositivelywithdisability.com

    • Pippa
      Author
      May 20, 2018 / 1:53 pm

      Thank you so much Lowen: I may have to try out the alien abduction route some time in the near future! Hope today’s been as kind as possible to you xx

  7. Jenna
    May 8, 2018 / 12:17 pm

    I have ME and it’s increased in severity over the past year, to the point that now I feel too weak (in a muscular sense) to walk around much in public, like I don’t trust my legs not to collapse underneath me. It’s rendered me housebound. I’m thinking of getting a wheelchair, but I’m so new to this- would you recommend an attendant type, or the self-propel kind? Neither of my parents will accept that I want a wheelchair, because they don’t want me to be stigmatised as “disabled”, especially when it comes to job-searching. I think it’s the only way I might get some life back.

  8. Colette Morgan
    June 28, 2018 / 11:20 pm

    Im 27 and have Complex Regional Pain Syndrome in my leg and walk with crutches, I’m so fed up of the ‘what have you done then?’ Or ‘how much longer on the crutches?’ Questions. I tend to say it’s post surgical complications, but it’s so hard, it’s non of their flipping business.

    I’ve recently picked up a wheelchair, but an yet to use it. I’ve agreed to try a trip out on Sunday, but I don’t know if I can stand being stared at and more questions.

    I hope the new power chair is working out well for you, happy adventuring!

    • Pippa
      Author
      June 30, 2018 / 9:41 am

      Thanks for sharing this Colette. I can definitely relate- ‘what happened to you then?’ is the one I seem to get the most! I really hope the trip on Sunday goes as well as possible and that above all you’re as comfortable as possible and have a good time- regardless of what anybody else thinks, that’s the important thing. I’d love to hear how you get on!

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