There’s nothing more awkward than running into an old friend that you’ve lost contact with and dancing around talking about your MS. It’s a real conversation stopper, never fails! In my experience, there really is no easy way of approaching the subject. I despise telling people about it for the first time because I feel like it’s all that defines me. Unfortunately it’s something that you just have to do, Over and over and over again!
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” which always inspires a well timed eye roll on my part! As much as I like to hear that your great aunt is doing well, I’m more inclined to believe that maybe she’s not completely fine but she doesn’t have the energy for 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!
You can get into the immune system speech and do your best to explain the in’s and out’s of brain lesions but usually once you get to the myelin you’ve lost them! I have found the most useful and easy way to explain what MS is to people that aren’t as familiar with neuro terms as you may be, is to start with a kettle.
An electric kettle specifically!
We all know that for a kettle to boil it has to be plugged in to a wall socket. When it gets 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, 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 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 the immune system attacks the protective myelin layer exposing the nerves which are then at risk of further damage. When our nerves are damaged 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. And if you don’t have MS but know someone with it then I hope this has made it easier for you to understand too!
Nobody knows what causes multiple sclerosis and as of yet there is no cure. Spreading awareness is the first step towards a breakthrough in this disease that effects almost 3 million people worldwide. Over 5000 people are diagnosed with MS each year and no two patients experience the same symptoms. It can be scary but if there was a nap olympics we’d win and that’s pretty cool.