Woman with glasses smiling

Lazy? No, just disabled… life with an invisible impairment – #100days100stories

Guest post by Carol, an administration manager from Leeds. Carol has Ehlers-Danlos syndrome, an invisible impairment, and has shared her experiences as part of our 100 Days, 100 Stories campaign. Last year, she worked with us on a film raising awareness of the extra costs disabled people face.Head and shoulder shot of Carol dressed in black

I was once in a lift with a very, very senior manager at a company I used to work for. I was going up one floor, but I needed to take the lift because I struggle to manage the stairs.

I pushed the button, and he looked at me and said: “Only going one floor, are we? Aren’t we lazy?” I smiled and said: “No, just disabled.”

To be fair to him he was mortified, and it made me laugh more than anything else. And he was always extremely considerate of my needs after that. But it struck me that that’s exactly how the world often sees disability.

No middle ground

The assumption seems to be that either you’ve got a wheelchair, or have some other very obvious impairment, or you’re not disabled at all. There’s no middle ground.

It’s present even in the symbols we use. The universal symbol for disabled facilities is a person in a wheelchair, but that’s not necessarily what a disabled person looks like.

I have something called Ehlers-Danlos syndrome hypermobility type, which affects your connective tissues. Among other symptoms, it means your joints are very prone to injury. I have also had something called Perthes’ disease, which means I now have osteoarthritis and need a hip replacement.

I can’t walk very far, I can’t carry heavy things, I get tired very quickly and sometimes my joints partially dislocate.

Sometimes I limp, occasionally I have to use a walking stick, and often I’m wearing joint supports under my clothes, or taking a lot of painkillers. But often, you can’t tell that I am disabled.

People’s reactions

Because I don’t look particularly “disabled”, people are surprised that I need adaptations at home and at work, or that I might have extra requirements.

There have been lots of times where I’ve said something like, “Actually, can we get a taxi because I can’t walk that far?” and had blank looks back in return.

On a good day, I can walk about 160 paces without too much pain. That doesn’t get me even as far as the bus stop, so I’m completely dependent on my car.

I have a blue badge that allows me to park in disabled parking bays, which is an absolute lifesaver, but I’ve had some unpleasant run-ins with people who think I shouldn’t park there.

I get stared and sighed at when I’m climbing out of my car, as people realise I’m not elderly or in a wheelchair. People have literally run out of buildings to tell me to park elsewhere.

I know they’re trying to do the right thing, but it’s an awkward encounter that I could do without – especially since I often can’t get a disabled space because a non-disabled person has used it to pop to the cash machine!

Better support

Social faux pas aside, there are bigger problems with the way society tends to ignore invisible conditions. Because they aren’t there on the surface for everyone to see, it’s very hard to get the right support.

Often, I see doctors who have never heard of Ehlers-Danlos and ask me how to spell it, so it’s no surprise when NHS services struggle to help someone with my condition. I’m prescribed lots of  painkillers, but I can’t drive if I’ve taken them and if I can’t drive, I can’t do much.

I’ve had to change career, partly because my impairment was not supported by past employers. I’ve adapted my lifestyle, my hobbies and my expectations of life.

With a bit of consideration and help I’m capable of working, living independently and making a useful contribution to society – as are many, many people with invisible impairments. With just a bit of extra support and understanding our lives could be so much easier.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.

24 thoughts on “Lazy? No, just disabled… life with an invisible impairment – #100days100stories”

  1. Hi, I feel the same way. I have CRPS and Pernicious Anemia both cause fatigue and I have mobility problems and can’t walk far. My ailments are invisible to others, even though I have a walking stick and a blue badge too, BUT I still get stairs rude remarks and made to feel uncomfortable. Its not fair that people look at or speak to us without even knowing us or what is going on with our health. I say you shouldn’t read a book by its cover!!

  2. How true! My son has ASD and therefore “looks normal”, whatever that is. The number of times I was told that when I spoke about his autism…. This would be a good scenario for the End the Awkward campaign.

  3. Sums it up nicely 🙂 it’s even harder when loved ones don’t want to understand or just think it’s made up..

  4. Hi Carol – it was really nice to read this piece, thanks for your honesty! I get asked at work by people why I’m off sick so often and when I reply ‘there’s a hole in my brain’ there’s just silence. It’s also something very rare so when I talk to doctors more often than not they have no clue what I’m talking about. Coincidentally, I’m also from Leeds!

  5. We have Narcalepsy in my family and my father suffered badly from comments regarding him falling g asleep during meeting or social gatherings. People assumed he’d been drinking too much where as he was tea total.

  6. Thank you Carol. This is almost word for word my experience. I feel like I am in disability limbo a lot of the time!

  7. Aye, arthritis, fibro, kidney disease and incontinence. Walking is a killer. Today I was travelling by train and had booked seats, when I asked the people in them to move as they were my seats, they were very rude, until they saw my stick, then they apologised but still didn’t move.

    This came shortly after a ten minute argument with a woman who felt her luggage and empty buggy took precedence over the lady in front of me in a wheelchair in the designated wheelchair space. The lady and her carer were gobsmacked at how rude this lady was, so I spoke up and had to argue and raise my voice until a member of staff came and told her to move.

    Then during the day as I was struggling around on my bright purple walking stick, I was angered by the ignorance of people walking on the street towards me and refusing to move a step to the side out of my way like every three seconds. I don’t mind once or twice as it’s busy, but all day was wearing thin on my tolerance, especially as I had my children with me who also seemed to be invisible and were nearly knocked over several times. I was stopping dead and refusing to move by the end of the day, which makes me cross because I hate feeling rude or entitled, but when you are simply ignored until you can no longer deal with the pain, you have to get your point across somehow.

    Points went to the staff at Build a Bear, as they brought me a chair, offered me a glass of water, and took my children through the process of getting their bear while I rested. And the the one gentleman and one lady who moved out their seats on the train on different legs of the journey.

  8. Wonderful article. The only thing I would change is the word “impairment” to something more neutral such as “status” or “life situation.” Why? “Impairment” carries the connotation that there is something wrong – that the person is flawed. “Status” is just that – the way in which one is found. Take it or leave it, like it or not. It asks no apology and needs none. It simply *is.* Attitudes will change when people learn to see other people as people first, and not objects to label as fit/unfit, able/disabled, etc.

  9. “especially since I often can’t get a disabled space because a non-disabled person has used it to pop to the cash machine!” – The writer has herself made the same assumptions people make about her. She has no way of knowing if these persons themselves suffer from similar disabilities.
    As a mother of a child with a hidden disability I know too well the temptation to sometimes play to the gallery because of societal pressure (the snide remarks and looks). It’s sad and people shouldn’t have to live with such attitudes.

    1. Hi and thanks for your comment. I judge whether someone is entitled to use a disabled parking space by whether or not they have a disabled parking badge. I therefore have no need to “judge” their abilities. Carol.

    2. We once had to park miles away because some guy in a Merc without a badge took the last disabled space. He appeared to walk away normally, but my dad checked his dashboard for a badge before complaining to security, because we know that mum and myself (she has arthritis and fibro, I have fibro) don’t look disabled to look at us.

  10. Great article! I have a hidden disability too even though people cannot see it they define me as not disabled.

    I find it tiring if I am standing for too long and it can affect my muscles as I have bad muscle tone.

  11. >> I’ve adapted my lifestyle, my hobbies and my expectations of life

    That completely sums it up for me
    I also have EDS and other oddities.
    It’s nice knowing someone else understands!

  12. I too have had to adapt accordingly after the results of a brain tumour in 1978! My reaction these days to such
    totally “thoughtless” remarks is …. I didn’t order it by Amazon! it just happened! Unfortunately, I tend to be considered “tipsy” and that 24/7 – c’est la vie – keep smiling 😇

  13. I have a rare illness which means i cannot walk very far and so many people judge me as sometimes i walk and sometimes i go in a wheelchair.

  14. I have EDS alongside other disabilities and I am heartened to hear that you got a blue badge, as I intend applying. I have the PoTs that goes alongside EDS and there have been days where I could barely stand due to dizziness and extreme fatigue.

  15. I too can totally relate. At 34 and crippled with arthritis, I was recently told by some old cow to move my car as I was a too young for a Blue Badge, I got out of the car to give her a piece of my mind, she took one look at my condition and drove off!! Ageism works both ways, just because not 90 and knackered, doesn’t mean I don’t need a badge!!

  16. I’ve recently been diagnosed with Chronic Fatigue. I feel I’m one of the lucky ones though, it’s not so severe that I’m unable to keep going.
    I’ve found a job where the hours are suitable, it’s not too taxing and it’s fairly easy to get to.
    I do struggle with doing anything with my free time though as this cuts into my “recharge time* which is something that does get to me. Travelling I find very tiring and I have quite bad joint aches, something which isn’t great when you’re resistant to all but the stronger painkillers.
    Also I find I mix up words/stutter when I start getting tired and the more I get tired the more my cognitive reasoning suffers, something that’s equally frustrating and embarrassing 🙁

  17. Wait a minute. “I often can’t get a disabled space because a non-disabled person has used it to pop to the cash machine”?? How do you know they’re non-disabled? Because they’re not in a wheelchair? You’re just as guilty of judging people as the people you’re complaining about!

  18. I have Marfan Syndrome which is a very close disorder to EDS. I have had 2 major thoracic and cardiac surgeries in the last 10 years and suffer debilitating back pain and fatigue. Despite this I work full time (suitable adjustments have been made) and look like any other 25 year old (maybe a few more stress lines). I regularly encounter the same treatment mentioned here and it’s so frustrating. I’m so glad to see these stories raising awareness and really hope they are noticed by the right people who can offer the help and support the disabled need. Thanks foe sharing!

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