Living Like You blogger Aoife reflects back on our Facebook Live to share a few expert tips for the loved ones of those with MS.read more
There’s no denying that a chronic illness like multiple sclerosis is not pleasant. There are days when it all seems overwhelming and I just want to stay in bed, but even though I try to always stay positive, sometimes there just really isn’t anything good to pick out, right? Not so fast! I recently realized that besides being stressful, overwhelming, and generally a huge pain in the butt, MS can actually be a pretty powerful means of bonding.
In my daily life, I’m an actor, director and singer in a drama club in our local community. I work with a bunch of very dedicated and talented people and, as it happens when you work closely together with a group, you learn a lot about others and their lives. When our latest addition, Hugh, joined us, he mentioned that he was battling a chronic illness. It seemed like he felt the need to warn us against anything that might impair his productivity. And obviously, I could relate. So I smiled, and said “join the club.”
I could tell that was not the reaction he had been expecting, but most of the other members of our crew already knew about my MS, and most of them also knew that one of my favorite fellow actors, Landon, also suffers from chronic fatigue syndrome. There has always been a wonderful bond of mutual support between Landon and me because we understand each other on a much deeper level than those who do not face the daily challenges of a chronic illness ever could. When we ask each other how we are or if we got through the latest phase of intense rehearsals well, we both know the deeper meaning: “Did you manage to get enough sleep? Did old symptoms flare up or did new ones surface? Did you have to take extra medication? Do you need time off from setting up or taking down the stage? Do you need anything? Can I help?”
With the unpredictability of MS and CFS always lurking in the shadows, this mutual understanding is so, so precious. And here was another human being battling similar demons to those Landon and I were facing. I had always been intensely grateful for the connection Landon and I felt due to our chronic illnesses, and now I wanted to offer a similar haven to Hugh. So I explained: “Don’t worry, you’re not the only one here battling a chronic disease.” And then the three of us went on to tell each other about our lives with their respective lumps and bumps. Hugh suffers from narcolepsy, an illness I had heard about, but truthfully knew very little about. I learned that just like me, he often spends his days hoping for the best, but fearing that the symptoms narcolepsy can bring on will finally manifest. It was a warm, open and tremendously uplifting talk. Because if you tell a fellow fighter what you’re dealing with and they reply with an ironic grin, “Oh, jackpot!” you can’t help but laugh.
So, yeah, MS is scary. MS is crap. And yes, there are many times I wish I didn’t have to deal with it. But with all the issues and challenges it brings, it sometimes also leads to the funniest, most unexpected moments of joy and also some very strong friendships. Thank you, Landon and Hugh, for this one.