I was diagnosed with relapsing-remitting MS in 2019 and handed a bunch of leaflets that didn’t make much sense to me. My experience has been that we, the patients, have to do the heavy lifting to understand MS. There are so many phrases, acronyms, and complicated words thrown around. Often in a way that presumes you already have a concrete understanding of them.
In this blog, I’m going to explore how multiple sclerosis is communicated to us. I'll explore the impacts it can have on our relationship with MS.
(Before I go any further, I should clarify that while I work at Shift.ms, this blog contains my personal thoughts and observations).
A recent MS study from Ireland linked chronic fatigue with poor verbal learning abilities, visual-spatial memory, and information processing speed. (No surprises there I know). Consider this: when you’re diagnosed with MS you inherit a whole new language to learn. I’m talking about words like ‘oligodendrocyte’, ‘stereoanesthesia’, ‘trigeminal neuralgia’ and a host of other phrases and acronyms.
One of the pivotal moments in anybody’s MS journey is acceptance. This can take years and is often more of a fluid back and forth. After acceptance, the next hurdle is regaining your confidence to carve out a life that you love.
To process and accept MS, you need to be able to understand it. Difficulty in learning the MS vocabulary might disconnect you from a sense of ownership of your MS.
The team at Shift.ms recently asked members if they felt that MS language was accessible and easy to understand. 147 MSers responded:
* Strongly Agree: 10%
* Agree: 42%
* Undecided: 16%
* Disagree: 25%
* Strongly Disagree: 7%
It’s dismaying that roughly half of the community is either undecided or disagree. There’s a lot of work to do to bridge the gap between MS information and it actually being understood.
My colleagues will testify to how annoying I am using this phrase. This one is often seen on Reddit. It's used to ask for a simple explanation of a complex topic.
This is what the MS community needs more of. I’ve asked my neurologist to slow down and explain things to me in this manner and it helps so much. When in doubt, think to ask, “how would you explain this to a five-year-old?” - they’ve never had to know that I am in fact the five-year old…
I’d like to give a shoutout here to professor Daniel M. Oppenheimer, a psychologist who wrote a paper in 2006 titled; “Consequences of Erudite Vernacular Utilized Irrespective of Necessity: Problems with using long words needlessly.” Ever had that friend who can’t help but flex their vocabulary? Professor Oppenheimer's research suggests that actually using shorter words makes people seem more intelligent. I think there's something in his research that could be applied to the language we use around MS.
I want to make it clear that this is not a rant aimed at MS researchers, neurologists, MS nurses or other organisations. Everyone I’ve met in the MS world is pulling in the same direction: improving the lives of MSers and finding a cure.
A team of researchers don’t have the time to think about curbing their vocabulary. They’re against the clock and trying to secure funding. I see this MS language issue as something that’s fallen between the cracks.
You know the phrase “you can lead a horse to water but you can’t make it drink”? A clunky metaphor at best, right? MS information isn't disseminated in places where we naturally consume information anymore.
Think about it, when was the last time you read through a 30-page document for literally anything? (I’m happy to be proven wrong here, I’m a mega-lazy reader. If you’ve even made it this far in my blog then props to you). The ages of 20-40 are when you’re most likely to be diagnosed with MS. This makes me think of Instagram, YouTube, TikTok, other Apps, and maybe Facebook.
While there are amazing MS creators in all these spaces, how AMAZING would it be to see more healthcare professionals debuting the latest research on these platforms? Or maybe…
Officially the world’s lamest title. But you get my point. Researchers and organisations are using every minute to nudge us toward a cure for MS.
We, the MS patients, are already juggling symptoms, careers, relationships and families. When we’re not worrying, it’s lovely to forget MS for a while and focus on enjoying life. The people at either end of this spectrum are stretched. So do you think there’s a solution that exists somewhere in the middle?
I see this ‘Robin Hood-ing’ of MS information on Shift.ms all the time. Where somebody with more lived experience distils an overwhelming aspect of MS into easy-to-digest language for someone that is newly diagnosed with MS.
I’d love to know if you have any ideas or opinions that have come from you reading this blog. I’m only one person with over three years worth of lived experience with MS, and nearly two years of Shift.ms experience.
Please feel free to direct message me on Shift.ms here and let’s continue the conversation.
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Hey, I'm Billy from Shift.ms. I'm 30, from the UK and have been diagnosed with MS since 2019. When I'm not working in the MS community, I moonlight as a musician - sort of like batman with a guitar, only far less wealthy and cool. Instagram: @wjsmithmusic