‘You Look OK to Me’

‘You Look OK to Me’
4.6
(33)

“You look OK to me.”

He stood, towering over me, his big belly billowing from his shirt as he straightened up and lifted his chin, glaring down at me over folded arms. 

I swallowed. Anxiety rushed through me. What am I going to do? I was desperate for the loo, and if he didn’t let me in, I was about to pee my pants! 

“You look OK to me,” the bouncer said again, looking me up and down. 

I sighed.

“Look,” I said firmly, getting frustrated but trying to keep my cool, “I just told you, I have a condition called multiple sclerosis. I’ve walked from the train station to this bar so I can write an article for the MS Society. I’m here with them for the Masta Ace gig [he was performing that night]. My legs are very weak from walking, and the regular toilets are down a load of stairs. Stairs I will struggle to walk down and not get back up again. I’m worried I’ll collapse. I need a wee. Please let me use the accessible toilet. I’ll be two seconds.” 

“Nah, I don’t know, I mean, you look OK to me,” he snarked in his London accent.

I could not believe this was happening.  

“Are you serious?” I exclaimed. 

“The regular toilets are downstairs,” he replied bluntly. 

“I know! Oh, for God’s sake, what do you want to see? My MRI scans? My disabled badge? I just need a wee, or do you like mopping floors?!” I shouted angrily. “Let me speak to your manager.”

“Fine, I’ll let you in this time, but next time I might not be so nice.”

I shook my head and muttered under my breath, “You weren’t so charming this time, mate!”

Who does he think he is? 

My best guess is that he feels like a failure in life for being the appointed “toilet bouncer” of the bar and he was probably taking it out on me. I always try to analyze why people do the things they do; it’s just who I am and it gives me a better understanding of people. 

Why else would he act so entitled? I understand him having to swerve abled people who use the disabled toilet instead of walking down the stairs — everyone can get lazy sometimes — but actively saying no to a person who’s just told you they have a medical condition? That’s a big no-no. 

The thing is, something like this has happened more than once. I get it: I don’t “look” sick and appreciate that people don’t know any different. We need more education on how to treat others because it affects us mentally. 

I often have mild symptoms, fatigue being one of them. I don’t always use my disabled permit or an accessible toilet, only when I really need to. Even then I’m scared someone will say something. 

Have you ever experienced judgment like this? 

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.
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Jessie Ace is host of the DISabled to ENabled podcast. A podcast that aims to inspire people living with chronic illness. She’s interviewed everyone from Paralympians, radio DJs, chronic illness bloggers, and marathon runners. She’s also a writer and illustrator for the biggest MS charities worldwide such as the multiple sclerosis today, National MS Society, MS Society UK, shift.MS, MS-UK amongst others and she has also written articles and illustrated for Momentum magazine, MS Matters and New Pathways. Jessie was diagnosed with MS at 22 years old and says MS makes her feel blessed every day to be able to live a new life and to connect with so many amazing people. Her own experience of being newly diagnosed so young was negative and scary – she wants to change this for other young people and support them through the process by being a patient advocate.

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6 comments

  1. Cyn says:

    Yes ….I found a very nasty expletive filled note left on our windshield when we parked in a handicap spot , even though I had my parking banner in plain sight. I would not have even been able to walk into the store if I had not held my husband’s arm.
    The note said “you don’t look disabled ”
    It was written on the inside of a cigarette package !
    I got upset , but my husband said that the person that left the note was more disabled than me …. mentally disabled !

  2. Panos Lambis says:

    For someone who has never felt anything but what is considered normal I don’t understand why they shouldn’t they be skeptical when someone acts outside their awareness. In general I found most people to be considerate, but it certainly is not a revelation to find a hard boiled doorman.

  3. Kim says:

    Oh yes….. The “ you don’t look sick to me”. My most gob smacking hurtful experience of a version of this was towards the end of a sunny family day out. It had been a long day and I was too warm, my foot drop symptom and dramatic foot- dragging limp had returned and my vision was blurry. We were on our way home so I could recover when my son suggested ice cream might help cool me down (I have good kids but I’m not a fool, I didn’t, for a moment believe his suggestion, was merely concerned with my welfare, but it was thoughtful of him and potentially helpful). We pulled into a disability car park across the road from the ice cream shop. I rarely use the disability parking pass but in that moment I was so grateful the option was available to me as every ms symptom I ever had was piling on top of me and even crossing the road was an overwhelming proposition. I was leaning against our car when a car stopped beside us, the driver clearly assessing my rights to the spot. The woman’s inaudible shouting and furious glare was upsetting my children and led me to wave my disability parking pass towards her, at which point she wound down her window and her shouting became clearer “you look ok to me”. Excellent. Thanks, I’ll alert my neurologist.

  4. Cori Walker says:

    Fortunately, I have not encountered miserable people like this. At least not yet. Of course, I hobble with 2 canes, so there is no questioning that I am, in fact, disabled. Do you have a “crippled parking” tag to hang on a car’s mirror? I always carry mine so that closer parking options are available if I’m out with a friend. If challenged on my abilities, I can easily produce it as a form of proof. If you don’t have such a permit, you might look into getting one and carrying it with you.

    • Corryn Jenkins says:

      I’m pretty sure almost all of us have had the “You don’t look sick!” comment. Yay, we have an ALMOST INVISIBLE ILLNESS!!! I tend to think to myself “what a moron!” cancer is invisible for a long time too, My best friend (Aged 42) passed away during lock-down in New Zealand, meaning I could not be with her or even say goodbye. And she looked fabulous through most of it, she got the same comment, though she was dying she didn’t LOOK very sick! I totally agree that the public need to be educated better about various serious illnesses, that don’t neccesarily show on our faces or bodies.

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