While that’s not exactly how most of us found out about our multiple sclerosis (MS) diagnosis, at the time, it may very well have felt like our doctor’s words were that vague and uncaring. And then what?
Find Someone Who’s Walking the Same Path as You
Someone asked me the other day, in an interview, for any tips I might have for people living with a new diagnosis of multiple sclerosis. I’ve been at it so long that I had to check many of my comments as I can sometimes be a bit jaded about what the disease has done to and taken from me. I wanted to be as helpful as possible, so I thought about it for a while and said, “Get an MS buddy.” I had to explain further, but I thought back to my first years trying to get my head around MS and how difficult that whole process ended up being. Then I met a few other people with the disease through the National Multiple Sclerosis Society. Whether or not they knew it, those people helped me to navigate my course simply by treading the path along with me.
Be Sure to Check In From Time to Time
It’s sort of like the second-grade field trip where you’re assigned a buddy to make sure you get on the bus, meet up for lunch, and return home safely. You needn’t spend the whole day with your buddy — although you can, of course — but the object is to have someone with whom to check in from time to time to make sure you’re all right. That your MS buddy is also living with the disease can be helpful, since they may have come up with a workaround for one aspect of MS or another, where you might be a bit stuck. They may have a different perspective on the same issue. Or they may just be a sounding board off which you can bounce ideas.
Virtual MS Buddies Are Helpful, Too
Though I’ve had several of these partners as I’ve traveled my time with MS on my back, I also know the comfort of virtual MS buddies (the National MS Society has several ways to connect with someone online). Some of these virtual pals we meet online in the MS cybersphere. Others may start as in-person buddies then become virtual ones as we move around in life. The buddy system is co-beneficial, as we also act as guide, confidant, mentor, and friend to our buddy in return.
With a Buddy, Someone’s Looking Out for You!
A doctor, a friend, a spouse, or a partner can never quite get what it is to live with multiple sclerosis the way an MS buddy can — not that all of those other people in our lives aren’t of utmost importance in a healthy life with the disease. I’m just saying, if you ask me for one tip I’d have for someone who is a little lost on the field trip of a life with MS, it would be to find a buddy, and you’ll never miss the bus again. Wishing you and your family the best of health. Cheers, Trevis