MScommunication: Understanding MS (and helping others understand too)

“I have found that most troubles seem less troubling after a bracing cup of tea.”

-Mrs. Potts

There’s nothing more awkward than running into an old friend that you’ve lost contact with and dancing around the subject of your MS. It can be a real conversation stopper. In my experience, there is no easy way to approach the subject. Telling people about it for the first time can be difficult, I try to articulate myself without letting the diagnosis define me, but it often doesn’t go the way I intend. Unfortunately, this is something that we just have to do over and over and over again!

These encounters usually result in two things;

• The dreaded unsought pity reaction- “Oh… I’m so sorry to hear” with a wince of sympathy, followed by

• The ever-apologetic “erm… I’m sorry but what is ‘MS’ exactly?”

More often than not, that is followed with, “My great aunt has MS, and she’s fine.” As much as I like to hear that your great aunt is doing well, I often wonder if maybe she’s not completely fine but instead might not have the energy for the formalities involved with discussing the ins and outs of life with MS (we’re all guilty of it.) These types of responses are completely understandable, there really is no right way to react to hearing that someone you care about is ill. MS is surrounded by mystery, and without close exposure, it can be quite confusing and complex. Understanding is so important in the fight for a cure, the more understanding- the more awareness and significantly less awkward encounters to navigate.

You can get into the immune system speech and do your best to explain the intricacies of brain lesions, but ultimately once you get to the myelin, you’ve lost them. Thankfully, there is an easy way to explain MS to people who aren’t as familiar with neuro terms, and it starts with a kettle.

An electric kettle specifically!

Let’s stick the kettle on, shall we?

To boil an electric kettle it must be plugged into a wall socket. Inside kettles, there is an element that uses the electric current to heat the water and bring it to boiling point. The electricity makes its way from the plug in the wall through the wire into the element. The wires that carry this electricity are protected by rubber insulation, which protects the wires from damage and protects us from the live wires. If for whatever reason, we peel back the insulation on the wires- the wires would be exposed and easily damaged. Once damaged the wires can’t carry the electricity to the element that boils the water. That in a nutshell is MS.

The plug is the brain- sending signals to the rest of your body. The insulation is the myelin that is the protective coating surrounding our central nervous system. In MS, the immune system attacks the protective myelin layer, exposing the nerves, which are then at risk of damage. When our nerves are damaged, it can stop the signals from the brain getting through and, well, broken kettle!

This metaphor is a simple method of explaining what can be a very complex disease, and although every person’s MS is different, this explanation covers the basics of everything. The next time you find yourself struggling to make your loved ones and close friends understand without overwhelming them and yourself, pop on the kettle and discuss over a nice warm brew together.
And if you don’t have MS but know someone with it, then hopefully this helps make sense of it all.

MS comes with a myriad of additional symptoms and difficulties unique to each patient. The symptoms that one patient has, another may not and vice versa, giving MS the name “The Snowflake Disease” because no two patients deal with the same symptoms. The only thing we can be sure of is the damage to the Myelin barrier.

Nobody knows what causes MS, and as of yet, there is no cure. Spreading awareness is the first step towards a breakthrough in this disease that affects almost 3 million people worldwide. Over 5000 people are diagnosed with MS each year. It can be scary, but if there was a nap Olympics, we’d win, and that’s pretty cool.