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!