How to make your MS easily understood

”What is MS?”, “What happens when you have MS?” You have probably found yourself in situations like this many times before. People asking you questions about your MS or perhaps you have experienced episodes where you have had to explain your MS (questions or no questions asked). Language is an interesting concept. This post is about language and coping with MS through humour. Please stay tuned to the end of this blog post – you don’t want to miss out. In this post, you will discover insightful and unexpected analogies of MS and MS symptoms from other people with MS. Give a shout-out to Dominic, Martin, Heather, and Mark for their contributions on how to make MS easily understood.

The development of language in different groups

On a daily basis, most of us participate in various groups/communities. This becomes a part of our identity. You might associate yourself with e.g. us physios, us parents, us football players, us political active, us climate supporters, or something completely different. In these groups or communities, you will often find words, expressions, and ways of communicating being developed or learned along the way which make sense for the particular group/community only. But it might not make so much sense for other people!

You probably have lots of examples of this already in the groups/communities in which you take part.

Is there such a thing as a language of MS?

When you live with MS you will quickly learn and familiarise yourself with many new words. There is most certainly a language of MS.

Unfortunately, many of the words used can be difficult to understand or relate to. The words do not tell a person much about how it is to live with MS. You might wonder how to make MS easily understood. 

The thought of a language of MS first came to me during a physio course. The teacher was talking about her friend with MS. The friend was eminently describing her MS and in particular how it was to live with MS.

”Touch your ear”. A right-handed person without MS would most likely bend the right elbow to touch the right ear with the right hand without hesitation. But that was not the case for the friend and maybe not for some others with MS. The prompt to touch the ear might cause a diversion. In this case, the friend might lift the right arm above the head, bend the elbow and try to reach the top of the left ear with the right hand. Not exactly a shortcut! Nevertheless, it is a great example of planning and execution of a movement when someone is living with MS. 

It may be that you are also experiencing diversions like this? 

Perhaps your MS is a bit like the picture below? A part of you doing it’s own thing – just like the branch that broke on the tree?

 

 

The blogger Martin Baum provides us with an excellent analogy of living with MS.

“I have a relationship with MS that makes me feel like I am a hostage to fortune. Imagine living with a partner that doesn’t take no for an answer no matter how much you plead, beg, cajole to leave you alone but will not, no matter how abusive and harmful it gets.”

“If it was a marriage that was interfering with my life I would have divorced it years ago but MS doesn’t work like that.  Citing irreconcilable differences to an illness you cannot see doesn’t cut the mustard which means we’re stuck with each other whether I like it or not and I don’t.”

 “So in an attempt to make this relationship work I have decided to live with it by making compromises to accommodate it; what choice do I have, despite knowing MS will never accommodate me.“

 

What is MS?

It can be incredibly difficult to explain MS. There is a number of reasons for this. Some  people have many symptoms and some people have few. The same symptom can vary from person to person. Some symptoms are invisible to the outside world and some symptoms even vary over the course of the day. Unfortunately, there are still some prejudices surrounding MS, which makes it hard to navigate when trying to explain MS to others.

We can use many big words about MS.

• MS is a chronic and degenerative condition.
• MS is a neurological condition.
• MS is an autoimmune condition.

– but maybe that is not exactly the words you would use in front of your friends, your partner, your colleagues, etc. 

How do I talk about MS easily as I experience it?

In connection with writing this post, I was asking on Twitter for symbols and analogies used to explain MS. 

One person described MS as the difference between an old car with heavy mileage and a newer car with limited mileage. 

One person described walking with MS as walking on a sandy beach. On less good days, the sand was wet and even more difficult to walk on. 

Some people described the sensation of being drunk yet sober – or the feeling of being constantly hungover. 

Many use analogies of electric cables or wires when they explain MS. Using everyday symbols makes it easier to understand and relate to. It makes sense to relate nerves to electrical wires for most people. Dominic from themsguide.com elaborates on this analogy in his own way:

“I explain that it is like wires in a computer. Randomly and intermittently stripping insulation off. May be harmless, may short the entire thing. May be intermittent, may be permanent. The only repair is wrapping electrical tape around them. Never as good at the real thing.”

 

Keeping MS a secret

There are still some ignorance and prejudice surrounding MS in our society. This can create an environment with discrimination especially when it comes to working environments. It may be the fear of discrimination that causes some people to want to keep MS a secret.

It is understandable and only you can decide who (if any) you want to tell about your MS.

However, I would encourage you to spread awareness of MS! That way you can help break down prejudice and stop discrimination. The more people who know about MS and may even know someone with MS the better chance of stopping prejudice and discrimination.

Humour as a part of coping positively with MS

In connection with my own blog, I often read blogs from people with MS. On these blogs, the language is often full of humour and positivism. Some bloggers use writing as a kind of therapy. Expressing feelings and experiences in writing can be a way of coping with a chronic condition.

In a previous post I covered humour as a part of positive coping strategies for MS. Positive coping is important in terms of increasing quality of life. Humour may absorb impact, liberate you, reduce your stress and promote your general wellbeing. This can be the case for other chronic conditions too.

Living with MS is not easy. It can be very stressful. It can be exhausting mentally and physically. You could probably add a whole lot more adjectives….

Nevertheless, humour may help you if/when you experience stress due to MS. Using humour as a part of coping with MS may help you to take away some of the stress. You might even be able to minimize the impact of the stress. The opposite pole of humour is catastrophizing and having a negative outlook, which is not helpful when it comes to MS.

Examples of humour and MS

Through my work as a physio, I have met a lot of people with MS. At my previous workplace in the UK (Berkshire MS Therapy Centre) there was a lot of laughter in the gym. Humour was most certainly a part of coping. Just like the sense of community and belonging was a part of coping.  

During Covid-19 we have learned (even more so) that communities also can be online. Many people online play a great part in spreading awareness and positivism around MS. Here is Heather’s take on how her MS behaves: 

“MS is like constantly carrying around a very temperamental toddler, who is on the edge of having a huge tantrum at any moment. With MS (the naughty toddler), everything seems to make it grumpy, which results in an increase in symptoms or a full-on relapse. This means I am constantly telling my toddler that everything is fine (even if it’s not…) and that there’s no need for any big tantrums – definitely not. 🙂 Unfortunately, the toddler doesn’t always listen, but I like to think we sometimes come to an understanding. :)”

 

Mark Webb is a great example of someone talking about diversity and MS awareness in a fun and uplifting way. This is how he describes his MS pain with a dash of self-irony:

”My very first symptom was intense pins and needles down my entire left hand side for three long days. But that description does it an injustice. I call it ”nails and needles” in retrospect, and the sensation sometimes returns, happily not for three days.”

“Of course, being a young, carefree man in his 20’s, I ignored it and wrote it off. And later decided I had had a minor stroke. Ridiculous not to have been to the doctor, or indeed hospital, if that was the case!”

 

How about you?

• How do you talk about MS – how do you describe your symptoms?
• Did you get any new ideas or inspiration on how to make MS easily understood?
• Are you a part of a community? Perhaps even one with a sense of humour! Otherwise, I encourage you to find one!
• Please share this post, so we can create MS awareness together.

 

P.S. A great analogy from the MS Trust – MS attack as being inside a treacle sponge budding!

P.P.S. Thank you so much Dominic, Martin, Heather and Mark as well as all the twitters. Remember to visit Dominic, Martin, Heather, and Mark via the links in bold in connection with the quotes.