Well, MS Awareness Month 2018 has come and gone, and I hope everyone enjoyed my daily conversation starters on my social media as much as I did! The response across all platforms was great, and I intend to continue this from time to time in the future!
One interesting pattern I noticed while doing this was the volume of feedback to questions being the largest when I asked questions with easy answers, and the ones we find ourselves having to answer most often–like what our first symptoms were, how old we were when we were diagnosed, or which diagnostic tests we’ve undergone. Questions about what we love about ourselves or the ways in which MS has impacted us in a positive way yielded fewer responses.
And that saddened me a little because MS is more than just cold, clinical terms. It affects us in so many ways, and it is so, so important to talk about this invisible disease and shove it into the spotlight. I encourage you, no matter the chronic illness you may live with, to look beyond the sickness and the label. This disease…it doesn’t define us or make us who we are. There is far more to us than a list of our symptoms. Life, and who we are, does not end with MS.
Another trend I noticed was that of MSers, particularly veteran ones, playfully ridiculing the idea of MS Awareness Month because we, as MSers, are already very much aware of it every single day.
And that’s so true! Having MS is exhausting and it’s a cross we must bear for the rest of our lives. Yuck! How can anyone else possibly understand?
That’s a funny thing about MS and other chronic conditions–that Honeymoon Phase. When people announce things like cancer, a bad car accident, a death in the family, or a heart attack, supporters are kind and gracious enough to rush in to offer their prayers, assistance, and casseroles. And we get all of those things, too! But with chronic illnesses, that burst of support and empathy has the tendency to quickly dwindle, leaving us exactly where we began, with the rest of our lives ahead of us, fighting against uncertainty and loneliness. Double yuck!
But what do those comments about MS Awareness Month, although made in jest, say to those who are newly diagnosed? What do they say to the people who know very little about this disease?
MS Awareness Month isn’t really for us, is it? No, it’s for the people around us who we keep lamenting over for not understanding what we are going through every day.
So help them. Remind them. Clarify. Explain. Describe. Allow them into your life, if only just for a taste.
You might be surprised how ready they are to listen.
*shameless plug, incoming* (If you haven’t already seen it, check out my article in Momentum magazine, in which I discuss how I see myself through the eyes of MS.)