There will never be a more awkward encounter than running into an old friend that you’ve lost contact with and dancing around talking about your MS. In my experience, there really is no easy way of approaching the subject. Personally I don’t like talking about it for fear of letting my disease of define who I am, but at the same time it’s something that you just have to do, I’m just never gonna get used to it myself.
99% of these encounters that I have had result in two things;
- The dreaded unsought pity reaction- “ooohhhh… awh I’m so sorry to hear” with the wince of sympathy, followed by-
- The ever apologetic “erm… I’m sorry but what is ‘MS’ exactly?”
More often than not, that is often accompanied by “my great aunt has MS and she’s fine” insert eye roll here! As much as I’d like to believe that your great aunt is fine, I’m more inclined to believe that she’s not, but she couldn’t be arsed with the formalities involved with discussing ones health (another post for another day!) But these responses are completely understandable, there really is no right way to react to hearing that someone you care about is ill. That is why helping them understand is so important in the fight for a cure, the more people understand- the more awareness there is!
ANYWAY this is the speech I have found most useful and easy to explain what MS is to people that aren’t as familiar with myelin and neuro terms as you may be, and it all starts with a kettle!
An electric kettle specifically!
So bear with me here.. for a kettle to boil it has to be plugged in right? So when it’s plugged in, the electricity runs through the wire, which is protected by the rubber insulation (the black wire in the picture) and lets say you, for some reason or another, peel back the insulation- it’s gonna leave the wires exposed. If the wires are then damaged they can’t carry the electricity to the element that boils the water. Well that’s MS. the plug is the brain- sending the signals to the rest of your body. The insulation is the myelin that is the protective coating that surrounds our central nervous system. In MS our immune system attacks the protective myelin layer exposing our nerves. when our nerves are then attacked it can stop the signals from the brain getting through and, well, broken kettle!
This metaphor has proven to be the easiest method of explaining what can be a very complex disease, and although every persons MS is different this explanation covers the basics of everything. I hope this comes in handy the next time you find yourself struggling to make your loved ones and close friends understand without overwhelming them and yourself!
I also hope my ramblings made sense!
let me know if this helped in the comments and let me know how you explain MS to others!
Thank you so much for sharing this. MS is one of those diseases that you hear about but you never really know what it is or what it does.
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I really like how you explained MS. Using the electric kettle was a great way to demonstrate this disease that many don’t understand!
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I super love the metaphor, I never really understood MS before now, thank you so so much, this is great. I think i will be using the same metaphor from now on.
Chad
http://www.mosaicslab.com
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Awww, i’ve got a good friend with MS and it’s a struggle. Thanks for being raw and sharing your story.
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Thank you for the explanation. I think most of us never know how to respond because we don’t really understand.
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I knew some people who had MS, but never really understood exactly what it was. This sheds a lot of light on this disease.
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Keep fighting the good fight, Jewels.
If you ever need someone to talk to about what you’re going through, I’ve been there myself and still am on a daily basis.
#mswarriors
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Thanks John 🖤 we got this! #fuckms 😅
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❤️❤️ very interesting read Jewels, you have a great way with words. The kettle used metaphorically was great for describing your illness. Much love to you x
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Thank you so much liz! You’re such a star 🖤
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Thank you for sharing your story and explaining MS in your own words.
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that metaphor is the best way I’ve ever heard MS described. Thank you for sharing
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Thanks for sharing and shedding some light! I didn’t know much about MS, but understanding is really a big deal!
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I like how you described it. It does actually made sense. Thanks for sharing!
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That is such a great way of describing it, thank you making MS make sense
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