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50shadesofsun

News and Opinions about MS, Health & Disability

Looks of disdain but I’m not drunk, I have a disability

on July 26, 2016

A few years ago now, my then wife and I travelled back to where we used to live in London to spend the festive season with relatives and was met by looks of disdain by people not understanding about invisible illnesses.

On Christmas Eve we visited the church where we used to go and took part in the midnight service which included the blessing of the crib. Now, we were sitting towards the front of the church and were supposed to walk to the back, in procession, singing as we went. Because that is where the crib was situated.

At that time, I had been diagnosed with multiple sclerosis but was still walking fairy normally although my balance was not perfect. And when I say ‘walking normally’, I already had foot drop and had to think about every step that I was taking.

how good i lookThat’s what many people just cannot understand, just how much effort it takes to achieve that state where they can utter those thoughtless words “Oh, you don’t look ill,” or the equally abhorrent “You’re looking better.” No, we’re not. We might be putting on a good face on the outside but on the inside it’s a different matter.

Anyway, back to the church. And here it is necessary to consider several factors: I was trying to think about walking so that my foot drop did not make me fall; I was walking in a procession and had to be sure not to walk into someone; I was trying to sing, looking at a hymn book; and I was trying to keep my balance. Now those are four things at once and I was never good a multi-tasking, let alone with MS.

Well, the inevitable happened and I stumbled. I didn’t fall but caught myself on one of the pews which moved considerably and noisily before I regained my equilibrium.

People spun around to see what had happened and I noticed a few disapproving looks of disdain from worshippers who had joined the church after we moved away. They had no idea who we were and no doubt thought I’d been enjoying too much of the Christmas spirit, the bottled variety that is – although nothing could have been further from the truth. Not only was I sober, I had not touched a drop.

This was one case of my then invisible illness, my invisible disability, bringing those looks of disdain from people who do not know me or my situation and are too quick to judge.

We meet people like that all the time, don’t we?

 

 

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2 Responses to “Looks of disdain but I’m not drunk, I have a disability”

  1. Linda says:

    I can see your journalistic talent. Who with MS cannot identify with your story? I never would discuss my MS while in RRMS because I didn’t want it to impact my job security. I was lucky to be in RRMS for 20 years with episodes that I worked hard to minimize or at least concentrate on what I could do…not what I couldn’t… before it crossed into SPMS. That is when I started feeling embarrassed at my lack of balance and walking “normal”..I did look drunk. I started pointing out my MS and I felt so free of not having to cover it up, or at least minimizing it, anymore. I am now retired and have been so pleased with how kind everyone is when they see me riding in my scooter to shop. They offer to open doors or reach for an item for me in the grocery store. I hope it is that way for you, too, in England.

    • ian0811 says:

      Hi Linda, these days I need to use a wheechair if I need to travel more than about 15 yards or stand for more than a couple of minutes and so, I agree, the days of being embarrassed by MS awkwardness are well behind me. As for help and politeness when out and about, whatever it may be like in England (the land of my birth), it is nowhere near the level of helpfulness shown by the people of Spain which is where I live now. (And that’s how I came to be photgraphed enjoying the January sunshine. That would not be possible in the UK).

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