Sam sitting on her sofa with a laptop

There’s more to me than meets the eye – #100days100stories

Sam recently wrote an open letter to the lady who tutted at her for using a disabled loo, which went viral.

This blog has now moved to our online community.

Join Sam on our online community where she explains why she’s started raising awareness for people living with an invisible disability.

15 thoughts on “There’s more to me than meets the eye – #100days100stories”

  1. A MUCH needed article and perspective. I too have disabilities and some of them are invisible. I have worked with people who have invisible disabilities as well. This is a very REAL issue. Thank you for putting it in the public eye and raising awareness of it!

  2. Reblogged this on Chaos, Cats and Chronic Pain and commented:
    This should be read by everyone. As the letter itself points out “kindness and compassion to a fellow human being is a choice”. It is just such a shame that this whole issue needs to be campaigned for at all, but as it does, and because there are so many of us with invisible illnesses – please read this, and follow the link to the open letter, share it with others.
    Maybe one day those two traits will be second nature instead of a choice.

  3. I remember reading about this story. People can be so cruel and heartless. If they were in the same position, they would want to receive the same respect that you deserve. Hoping things will get better…

  4. Well done for bringing this to the fore. Incidently, my view is that disabled toilets are toilets firstly that happen to be available to disabled people. Sometimes I don’t understand why we all politely stand in a queue while no one will use the disabled toilet? I have worked all my life with disabled people so I understand their needs. The toilet’s accessible and that’s brilliant…. but it’s also just a toilet!! Now if it was a disabled parking space. . .. That’s a very different discussion! Keep up this great campaign.

    1. I agree 100%. Use any loo if it’s free and you need to, you’re not going to be long anyway. Same goes for gents and ladies where these are just single loos; at my dentist’s surgery ladies will queue up instead of using the “gents” which stands clearly empty!

  5. I have multiple autoimmune diseases including ulcerative colitis and crohns aswell as some more life threatening ones. I can’t walk far but I like to try on good days, or leave my wheelchair to go to the toilet whilst waiting for an appointment but because of bowel issues need the sink n water to clean myself up in privacy plus the rails to help me get up but I’m only in my 30s so get evil looks so take my walking stick even when I could probably cope the short distance just incase I get those tuts ect as I also suffer severe depression due to my illnesses, I’ve lost all my friends, I have no family and it ended my very long term relationship so I’m all alone and the last thing I need is someone judging me for using a disabled loo when they don’t realise I’ve probably been in agony, passed blood or had an accident, have to be careful my ankles don’t dislocate due to a collagen condition I was born with, struggled to clean myself up as I have carers to help, taken more morphine to cope, checked my blood sugars, taken my meds as I take a lot and get looks for taking so many, but it’s ok to judge.
    I’m sure I was probably guilty of it when my daughter was young and disabled and I was ignorant as had no idea, people don’t question a child.
    Good for you for speaking up and hope you are as well as can be 🙂

    1. So sorry to hear of all your health problems, and that you’re coping on your own. Sending all good wishes to you x

  6. Yeah I want to make my story I want to move out of
    My care home house as I don’t want to live here anymore
    As they don’t understand me and they never will
    As I have hidden problems witch makes life at
    Chaldon road very very hard
    I use disabled loo sometime or
    Find ways to still,show that I am disabled too
    Life is Harded as people don’t want to see my
    Disabity and my problems
    Sometime I want to be put
    To sleep too die as some time
    I feel,no one cares

  7. Hello Sammy I know the feelings
    I have dyspraxia OCD autism
    Koone ves disorder
    Broken left hip,
    One kidney heart problem
    Anxiety mental Heath
    Hearing aids
    Child side kids side autism
    10 to 11 problems
    Walking stick
    Witch I use every day when I go out and about
    But only time I am with other people with mobity problems
    Is at lunch club but want to spend more time with
    People with mobity problems in there 30 age group I
    Want to join the Tuesday club in September
    And go on supported holidays and make DVD cd
    Video movies booklet information packs lots lots of ideas of
    Things I want to need to do to vist the lown wing centre in Kent
    To get the help care and support that want feel need
    For so so long want to have kids baby pets
    Disabled dog or kitten lots of love too all
    Love from Rebecca comment friendship advice tips
    Support wecome by all

  8. Not sure if it’s already been suggested as I haven’t read all the comments but something like this should be stuck on the door of the disabled toilet so that the ‘tutters’ are aware. Wishing everyone all the best 🙂

  9. Hello Sammy
    I know how it
    Feel I use an walking stick
    Outside and inside somtime
    I have dyspraxia aspers disorder OCD heart
    And one kidney anxity and mental health problems
    I broken my left hip 3 years ago as when i lost my
    Social services funding to whole world feel apart
    As feel I could not be the same Rebecca
    My life is not the same know but friends and social services
    Won’t see that my life is not the same anymore I want to
    Move out of supported living in to an care home or an group home
    As I have an lot of problems 10 or 11 in total sometime people
    Don’t Realy that I am disabled witch makes life Harder
    I am try to get an disabled loo key and an blue bade
    And bite and bobs to help with my life
    But not getting very far it hard going to day serve and stuff
    Know as at my day service and in my house I am
    The only one use an waking stick I want to go on hoiday
    Move to an new house home an pet cat or dog
    Group where other younger people use or have mobity aids just like me but I am not very good at saying how I feel how I see things
    Sometime on bad day or months I want to be put to sleep
    I think a lot about that part I want to make DVD cd
    Video movies booklet information on my life all about me
    And if i want to sit at day service or use my wallking stick
    Or bits and bobs not be judged or feel worried and un happy
    As one of my day service Is for moderate active
    But I am not Moderate active know I am but not In the same way
    There an club in Bournemouth that I Would like to go to
    But don’t want to live my friends but can’t get them to see my
    Problems witch is why the booklet pack is specal to me
    I am hoping to go to Kent soon to go
    To an assmment centre to help me
    Get the care help support that I want and need
    To feel good happy again feel younger again
    Have an laugh an joke an giggle
    To see the world as an safe fun happy place
    To be me the Rebecca that I want to
    To make choices live the life that I want to live
    The child side the kids side too
    Any nice Tips comment advice Would be good bril
    Thank u love from miss Rebecca Nichols

  10. Hello Sammy , I lived with ulcerated colitis for about 40 years , really understand the looks you get for using disabled Loo’s and the smell,unless people are educated about our complaint they will never understand . I had a ilyostomy 5 years ago , and that is when my live changed . keep up the good work . from Yvonne

  11. It’s funny, I have Asperger’s, a hidden disability (most of my own family don’t really believe-in despite my diagnosis being via DWP who don’t give such things out willingly!), but I would – obviously – never dream of using anything other than the able-bodied lavatories.

    It seems to me that some sort of badge might help, although I can see it being abused in the same way the parking discs have been over the years. However, if it were an expensive (to produce) badge, like an cast, enamelled medal, that should make it not worth the cost/effort of knocking-off, for what can only be the odd queue-jump!

    If the design was easily recognisable, and was widely disseminated through social media and activist organisations like 38degrees upon launch, it could be worn hidden inside lapels, only to be revealed (with a flourish!) at those who tend to intervene? Only a thought.

  12. I completely understand this situation but for me the worst moments of my day happen on London Underground journeys. Sometimes my Crohns attacks suddenly as I’m still learning to manage it and although I look like a fit and healthy 28 year old, my legs can go to jelly with the intense pain. Occupying the only available seat and then being stared at when a woman with children or an elderly person stands near by can make me feel unbelievably guilty. I always want to explain myself but it all sounds so pathetic. How do you make people understand it’s not just a tummy ache?

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