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I’ve had it up to here with… “I’m not drunk, I have MS”

People within the MS community are rightly quick to point out when others say or do things to offend us – I’m thinking about the frequent lists of Things Not to Say to Someone With MS.

But I often think that some of the things which WE (people with MS) say and use in our everyday dealings aren’t exactly helpful.

Firstly, in this series of posts I’m in no way out to cause offence – as has been noted before, I’m an old hippy and I’m not trying to tell people how they should be managing their own condition. And I’m certainly not perfect, and I’m not trying to pretend that I have all the answers.

But we should definitely be considerate in all our dealings with those around us.

And like it or not, we are each of us an actual real-life representation of living with MS.

We need to be the best Person With MS we can be in order to advocate for our condition and to get people to care. And we should all think about how the way we are can reflect on all people with MS.

Think of the following as a provocation or an op-ed piece.

1 – I’m not drunk, I have MS
(not the UK-based website specifically, just the phrase itself)

On a nit-picking level, by linking being drunk (a temporary, mostly pleasant experience) with MS (deeply unpleasant at times, no cure at present) aren’t we belittling ourselves and the condition we deal with on a daily basis?

Some people could see this slogan and think that, if being drunk and having MS are so easily confused and interchangeable – even on the most basic level – well, what’s the big deal?

I’m not denying that this has a certain cathartic power – but when you spit it at a work colleague / family member / random stranger, what does it achieve? Did it make you feel better for a few seconds?

Here’s the thing: a couple of hours later, that person in the street you shouted at? They still don’t have MS, and now they don’t care about people who do.

My frustrations with this phrase came to a head recently when the UK MS Society started using it as a major campaign slogan, putting it on beer glasses and T-Shirts which are being sold through their Christmas catalogue.

I get that this kind of thing might spark a conversation which might allow you to educate someone.

But it’s not as if a t-shirt is going to alter the perception of someone who makes a silly comment when we’re staggering down the street – that level of education is somewhat bigger than a bottle opener.

And I don’t really buy the theory that people will be more inclined to engage with someone if they appear to have a sense of humour. The laugh this catchphrase provides is snarky and not-a-little passive aggressive and might be seen as outright confrontational.

I know my close family members / friends / work colleagues wouldn’t be laughing if I turned up wearing a hilarious MS-themed T-shirt. They’re on my side so it’s not as if they are going to forget.

Aside from people writing articles like this one, what are the things which you’ve seen in the MS community which you don’t approve of?

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Comments

  • Barbara
    5 years ago

    Thanks for the article. I understand your approach to the statement and that MS is no fun and definitely not a laughing matter. I tell people that walking for me is like being drunk and not in a fun way. I let them know that I don’t drink alcohol and if they see me walking like this, just to lend a steady shoulder or offer to sit with me for a bit.

  • opirnia
    5 years ago

    with stacy on this. sadly once when in DC I barely made it back to the hotel–only to then have security escort me to my room! Which they then searched for drugs. Since then I have a collapsable cane in my purse at all times. whatever.

  • traci
    5 years ago

    Yes old hippie, I see your point , however, the people around me are the ONLY ones I would wear a shirt that said thid around. They have chosen to never ask me anything about my ms and are rarely around me. I do not choose to inform them at holidays about why I am not helping wash up the dishes. They should look it up on the internet instead of fulfilling their discography check lists and such. I would nev er wear an I’m this way because of this shirt for strangers.

  • Benb
    5 years ago

    When I was younger (I’m 36, and have had MS symptoms for 30-or-so years, although I went undiagnosed until 2002), I experienced wildly unpredictable physical agility. Because they didn’t identify pediatric MS until recently, all sorts of conclusions were drawn about me. Not one to suffer this like a doofus, I integrated my physical surprises and strangenesses into my public character; the resulting slapstick ensured my enduring popularity as “the life of the party.” It was only by way of divorcing myself from my manifested symptoms that I could render myself approachable to others, even if my self-aware incorrigibility was somewhat nefarious.

    Now, things are different, because I have children. In the U.S. (where I reside), there exists more than a little fear at that which is unknown, and the response is not only to draw conclusions/make assumptions, but also to react as if it’s a threat. (This is a recent cultural phenomenon as much as anything.) If I don’t make absolutely clear that I have MS and am not intoxicated, I will be ejected from (or barred entry to) any given premises, attract police attention (whether first-hand or phoned in), get my arse kicked, and/or expose myself to the ravages of the Child Protective Services system.

    (Needless to say, this has taken every bit of fun out of drinking itself, and I very rarely partake.)

  • Stacy
    5 years ago

    I tend to laugh at myself…because I DO walk like I’m drunk more than just occasionally. It wouldn’t bother me at all if I heard a total stranger say, “Wow, she must be drunk.” I could very calmly & assertively say, “Yeah I wish I was drunk – I walk like this sometimes because I have multiple sclerosis.”
    If they asked what that meant…perhaps I would explain it in simple to understand terms. If not, who cares?
    There have been times, especially at the airport when I WISH I had a T-shirt on that made some kind of reference to having MS! And those times are usually when I should just suck it up (my vanity) and ask for a wheelchair.
    I don’t think being drunk is a laughable matter. However, I do think the “I’m not drunk, I have MS” saying – eases a lot of embarrassment for the person with MS as well as the person that may not know.

  • Paula
    5 years ago

    I’d like to get some feedback on accomodations employers have made…does this look reasonable???

    http://www.pharmaciststeve.com/?p=4584

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