When I started working for MS-CQI, the very first thing that I had to learn was what ‘MS’ even stood for! See while my expertise is in research it’s actually in the wildlife and conservation areas of research; not clinical. I also never ran into the term in my own life bubble. My family didn’t have a history of ‘MS’ nor did any of my friends.
I did what many of us now do when we don’t know something; I googled it. I typed into my address bar “What is MS?” and hit enter. The over 3.7 billion results quickly filled me in. I could see ‘MS’ was short for Multiple Sclerosis. Furthermore, MS was a rare auto-immune system disease in which the cause of it still isn’t fully understood. I read over the systems, the types of MS, and the affected population estimates.
I thought I understood MS after doing an internet ‘deep dive’ on it. I realized how wrong I was. It takes talking to people with MS, to their families and friends, and to their clinicians. MS may be a disease, but it has different meanings to different people. Some clinicians will read verbatim the clinical definition of MS when asked. Even the National MS Society will first explain MS as an “an unpredictable, often disabling disease of the central nervous system…”. Some patients will tell me it’s “an incurable disease”. Others affected individuals will say “it’s a condition I live with”. Friends of MS patients will say it’s just “a medical issue that requires monitoring”. Sometimes I even get the definition that MS as “just an alphabetical soup label that I refuse to let wholly define me”.
The most unique answer I’ve received so far is a from a young lady I met at an MS conference in Stowe, Vermont of 2018. She told me “MS is just a bridge to connect with others”. I had to pause at that. After hearing all these clinical terms, definitions, and symptoms, there was a person that was looking at her condition from an entirely different perspective. She told me that before she had been diagnosed with MS, she lived mostly in her own bubble. Like me, she hadn’t even heard about the disease before. However, when she was given the diagnosis of MS, her doctor immediately referred her to a local MS community. It was then that she felt her world had opened up. She started going to meetings, having lunch with others who had MS, and connecting with people in a way that she previously never thought of. She told me she has a much more diverse friend group and view of the world than she did before. While she is saddened by the diagnosis and the symptoms that she has, she is grateful for the chance to connect with others and to now share what MS is to her.
I admit that I did tear up a little when she told me her story but I also nodded along as I realized thought of the various definition of MS. My take away is that MS is a condition that shouldn’t be taken lightly but it is a condition that can also offer a chance for people to come together in ways they never realized before. MS provides a chance for us to open up to one another, to stand beside someone, and to help someone. You don’t have to have MS to connect with someone that does, but you can use MS as a social bridge.
Ultimately, the definition of MS is what you make it.
Written by
Troi Perkins
