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Video I made about Invisible Disabilities at Work

I’ve had a really bad experience at work since I got my first symptoms of MS. I don’t have a wheelchair or a walking aid, so even though I had Occupational Health confirming I have a genuine disability, there were unfortunately people who had a lot of institutional power over me who made assumptions that I was “putting it on”. One of my managers referred to me as “playing the disability card”. He really did say this (more than once) and a lot of worse things as well, which has been kind of heart-breaking, especially at times when I was really struggling with flare-ups of MS and was already feeling pretty low.

Anyway, I made this video about how invisible disabilities can affect people at work. I think it’s something that is being talked about more nowadays, but still probably not enough. Some people still have a stereotypical idea of someone with a disability as being a “person in a wheelchair” - not even a person who a wheelchair, but someone who’s just “in” one, as if disabled people come with wheels attached. A lot of people on this forum will be wheelchair users some of the time, and some might be wheelchair users most or all of the time. Others might use various types of walking aids, sometimes or often, and some might not use anything at all. Whatever our situation though, I think many of us have the experience of symptoms which are not visible to someone looking on from outside.

That’s what this video is about. It would be great if people can watch it and let me know what you think. I’d be grateful for any feedback. Criticism is ok, but please make it constructive, i.e. suggest improvements, or if you don’t like something or disagree with the way it is said, then let me know, but try not to be too harsh!

I am not a film-maker and this is only the 2nd video I have made. It is also text-based, because I didn’t have the confidence to do a voiceover.

*** Epilepsy warning: video contains some flashing sequences and flickering images.***

Here’s the link:

https://vimeo.com/280159517

You won’t need a Vimeo account to view it.

Thanks

space-monkey

2 Likes

excellent video!

i love the visual representation of the buzzing feeling in the legs.

i went to the tate modern last summer and was inspired to paint the way ms makes me feel.

which is that my legs are dissolving from the feet up.

i have given it a lot of thought re technique but haven’t yet started it.

new years resolution is to dig out the paints and get it done.

so you have inspired me to begin what was originally inspired by the tate modern!!

thank you space monkeey!

Thank you catwomanCarole58!

I can really relate to your feeling of your legs “dissolving from the feet up”. That’s such a resonant description.

The challenge of communicating the experience of MS is, I think, really important. I sometimes get quite an urgent need to think ?

Your idea of painting how MS feels is an excellent one. Dig out those paints in the new year! I think you will create something very vital and important.

Yes i liken the leg tingling and buzzing to a bottle of lemonade which has been shaken up and full of bubbles. I often tell people i am in pain 247. it never stops you may think i look ok today but my legs are constantly buzzing, tingling, vibrating, phizzing, burning, feel like i have been in a nettle patch. its non stop. my head when i am tired is buzzing, hissing, whistling all day even with the music on loud.

I went out yesterday exciting morning i signed my life away on a sheltered flat. I looked disabled as i had my wheelchair electric. i only use it as to walk is agony in my brain the fatigue its like walking through concrete or quick sand. I am not paralysed.

i sat there chatting and my legs were just buzzing, painful, my back was aching so bad i could have cried, but all you could see was me sat in a wheelchair, the idea is i am paralysed i am not.

during the night i woke up constantly in terrible pain in my worse leg nerve pain ugh ugh ugh.

going out for me is hell on earth.

Yes i look disabled but know one knows why. My disability is different then yours but your still able to walk and function long may it last, but it doesnt mean you are not disabled or designated to follow me. MS is a crap illness. everyone has it different.

what makes me cross is. someone can have cancer say breast and no one can see it but they never treat them as though they are lying. People are sympathetic and supportive. Say you have MS and are stood there they just say oh dear well hope you feel better soon…god i wish.

can i share you video i belong to several MS groups and i would like your video to go viral.

xxxxxxxxxxxx MERRY XMAS. thank you for taking the time to be an advocate for us all. x

hiya#

bravo-i really enjoyed that, thanks.

i am lucky to be obviously disabled now (thats not sarcasm!) i remember the earlier days and totally understand what you are saying.

2 examples from me re trying not to judge… once when i was at a hosp appt an nhs worker strolled out the disabled loo. another time a manual worker with work boots and hiviz jacket strode out the disabled loo. my first thoughts were ‘they were maybe dealing with a catheter’. i had re re-train my thinking to this! it is not easy as humans we are very judgemental but the only person we can really influence is ourselves. one at a time, one at a time! and u are showing a fab effort by showing this!

thanks again, ellie

I like your shaken-up “bottle of lemonade” analogy, Crazy Chick! That captures it really vividly for me. A lot of people would likely be able to conjure up an impression of lemonade fizzing away so it’s a good way of getting it across.

It must be so tough to have that constant pain and people having the expectation that being in the wheelchair means you’ve got to be paralysed. I think we can all understand that people don’t necessarily know straight away about all the different ways that MS can affect different folk differently, or even how the same person can be affected differently at different times. That’s just a matter of not yet being informed and if people are open to listening and learning then it shouldn’t be a huge obstacle. It’s when you do inform them and they still want to hold on to their assumptions anyway that it gets really frustrating. I’ve had a line manager try to tell me that my MS should get better in the heat, when were having a bit of a heatwave in the summer, and it was making me feel much worse. He said “doesn’t joint pain gets better in the heat?”. Well that might be be all very well if my problem was arthritis, but it’s MS, so… But he knew best!

Like you say, there are some illnesses where people are generally sympathetic and supportive, so it’s really hard when you feel like you have to explain yourself or when people seem suspicious. Mentioning MS to that manager always made me feel like I’d claimed that “the dog ate my homework”. It’s painful just remembering it.

I’d be happy for you to share the video with anyone in your groups. I’m glad that you think it’s worth sharing

A very Merry Xmas to you too Crazy Chick x

Oh, that’s really great. I’m glad you enjoyed it and thanks for watching it.

Yeah, you are right. We can all be guilty of rushing to judgements sometimes. There’s so much you just can’t tell about what a person’s got going on from first impressions. I’m sure I’ve made some pretty dodgy assumptions in my time, and I suppose the experience of being on the receiving end of unfair judgements has been good motivation for me to be more careful about things like that.

1 Like

Oh my that was a damn good read, I could relate to it. I had to go back and read over again as unfortunately as I was going through it I had forgotten what I had read. Your right about the judgemental thing. It does make you really think about how we assume things.

Thanks

Izzyx

ok, spacemonkey i will share it on my wall too on facebook as a lot of people suffer now with invisible illnesses.

I was going to have a tshirt made. I AM NOT ILL I AM NEUROLGOICALLY CHALLENGED! after been told so many times well you dont look sick. I am not sick, like i said i am neurologically challenged. then on the back would be a wire all frayed.

so many people just dont understand MS. My husband did he is an electrician so i explained it like it would be a faulty wire lol…he got it straight away.

i dont get joint pains. like you said i dont have arthritis.

I hate the heat it is my worse enemy.

People are so close minded. they just dont want to know. Maybe they are scared they may get it. Mind you some doctors are also guilty of it.

I wrote a blog you can use it if yo like it explains some of the issues we have.

I really get your post. Its like hitting your head against a brick wall.

big hugs; xxxx

Thanks Crazy Chick. The frayed wire thing is pretty much what it is, isn’t it? I think you should make that t-shirt!

Thanks for sending me your blog link. I love the images you’ve used, like the computer dialogue box with “Not enough memory to complete this operation” - that’s brilliant!

Also, that information on Uhthoff’s syndrome is great. I’d forgotten the name of it, but that’s exactly the thing I was talking about when I had that incident with my line manager, trying to explain that heat can make everything worse and he didn’t believe me. Just having a name for things can really help with that sort of thing, even if it’s just to keep yourself sane, because you know that what you are experiencing is real and backed up by science.

Loved the graphic depiction of nerve pain. I’d love to put that on a t-shirt and wear it to work!

Also… I am so sorry to hear about your husband. My words can’t do justice to such a loss, so I can only say I am truly sorry and my heart goes out to you. He sounds to have been a wonderful man and your soul mate. I hope you don’t mind me saying this, but I read the part that he said he didn’t want to die because he would miss you too much. Some years ago, my mum died from a glioblastoma (brain tumour). A few months before she died, she said something very similar to me, my sister and my daughter. We were watching Charlie and The Chocolate factory on TV, and she said “I am going to miss you all so much.” This memory has been with me ever since and when I remember it, it makes me feel her with me too. Even though I miss her so much, it brings her closer. You said you have felt comfort in dark times from Mike’s words. It’s good that you have his words and his love to keep with you.

Lots of hugs and have a wonderful Christmas season xxxxx

Thanks Izzy. I am glad I was able to say stuff that you can relate to. I get what you mean about having to re-read stuff. It is a lot of written words, which I think is harder for people to remember.

If I was more confident that my voice wouldn’t “squeak” I might have tried to do it as a voice-over instead, maybe I will brave that some time! I’ve heard that a lot of people say they don’t like the way their voice sounds in a recording (something to do with the position of our ears or something like that, so our voice when we speak sounds different to us than when we hear it recorded). I think I sound like Mickey Mouse when I hear my voice recorded. It is disconcerting to think that is probably more accurate than how I hear it when I’m speaking!

1 Like

Glad you found the blog useful. send it to your line manager lol…maybe we should get some t shirts made.

Yes its words like that which keep me going. sorry didnt mean to make you sad. there are two stories in amongst that lot i wrote. its really odd as suddenly my brain has an urge to make me write stuff lol…never written stories in my life, and i will wake up with one in my head and have to put it down on paper.

Have a lovely Christmas sorry about your mum i lost mine too in 2016. Life still moves forward though doesnt it. i think its the memories that keep us going, and i talk about my hubby all the time as it keeps him alive still in peoples minds.

Dont let your work guy upset you. he is an idiot. not worth the hassle. The point is your trying to help others with your experiences which shows you are a very caring person. I have shared it on one of my groups already and very positive comments.

One of my favorite parts of my blog is the EMPTY CHAIR.

MERRY XMAS, have a lovely time. xxx

Wow, what a great video you’ve made Spacemonkey! It’s great and really explains the feeling.

You should definitely keep making videos and I promise you EVERYONE dislikes the sound of their own voice on recordings!

But great video well done you :smiley:

Thank you Roarylion. Your kind words are very encouraging. Happy New Year, by the way! Can’t believe we’re 4 days in already!

Good work space-monkey, it is tough to covey information in an engaging way. Your use of imagery is good and your timing duration and size of text also shows a good understanding of your intended audience.

I think video can be a good medium, I found the films on the Shift MS site really good at explaining complex stuff that would otherwise require loads of reading .

Keep up the good work

I also think that with the right kind of interview a vast amount of credible stuff can be shared. I know someone who does this commercially, if you would like some info, contact me via a private message.

Mick