Looking back at over the 16 years I’ve written the Life With Multiple Sclerosis column and remembering the thousands of comments it’s generated, I notice one sentiment rings louder than any other: It’s the sense of relief our brothers and sisters with multiple sclerosis (MS) express at not being the only one to experience one symptom or another.
I often refer to it as wanting to be “normal” in our abnormalities. Our symptoms can be so absurd sometimes that we’re almost surprised to hear that someone else is trying to cope with the same manifestation of our malady. The same, too, can be said of social aspects of the disease.
We seem to fit into the world around us on a diminishing order of magnitude as the disease progresses. To know that our hiccups in the “living” part of life with MS are shared by others in our community is as validating as knowing that we are not alone in experiencing a physical symptom of MS.
We Are Comforted by Knowing That We’re Not Alone
In our disease and in our living with it, we are comforted by knowing that it’s not just us, alone and adrift in a sea of experiences.
Like a shipwrecked sailor whistling from a lifeboat in the darkness, in hopes of finding others, our community has, for over a decade and a half, called out into the abyss so that others might find solace in acknowledgment. On occasion, to continue that metaphor, we have found others with whom we lash our lifeboats and form a raft of safety, acceptance, and validation.
It doesn’t cure the disease. It doesn’t lessen the symptoms, nor does it prevent the world’s waves from crashing across our gunwales. It does, however, offer a place to commiserate, to learn from one another’s successes and coping strategies, and to draw strength from like-minded people living with our shared but oh so variable disease.
Sure, there are times when someone with one of the “scary” symptoms comes into our community. Those are the times we face some of our deepest fears. We do so because to turn away from them would be to cast off from the overwhelming benefits of our little floating city.
At All Stages of MS, Community Helps
It may be due to the fact that the anniversary of my diagnosis (21 years this April) comes closely on the heels of the Life With Multiple Sclerosis anniversary (not a month apart) that I’m thinking about this. It’s also likely that the guy blowing that whistle into the night has also found comfort in knowing that he's not alone in his symptoms and experiences either.
Early on in this voyage, we may have second-guessed our medical teams’ assessment of our condition. We may have avoided and denied the subject like it was our job to do so.
It’s not uncommon to wonder if we were on a not-so-slow road to madness, as we remember the process of our diagnosis. And, if we’re honest, many in our lives may have added to that wondering about our sanity. …
But here, with us and with many other communities, we have found validation.
The Pandemic Has Changed How We Meet for Support
The past couple of years have been difficult for those of us who found our validation in the form of in-person self-help groups and meetups. So, too, for those of us who found purpose in volunteering for service organizations that have helped us along the way. With rolling levels of restrictions and personal levels of protection, many of those resources have been put on hold.
Even as groups start meeting in person again, many of us are still not comfortable enough to rejoin, concerned about the next COVID variant on the horizon.
All of the above has made online refuges like ours so much more important to an even larger number of us.
I Know You’re Out There, and I Care
So I guess this is the long-winded (how unusual for me) way of simply saying this: You are seen. You are heard. I’m sorry for what you’ve been through. I’m sorry to hear of your troubles. I know it’s difficult. I know that sometimes it feels like you’re out there and nobody understands.
Well, we do understand, and you are not the only one who has gone through this experience, nor are you alone in feeling the things you have.
It’s not a cure. Hell, it’s not even a treatment. But all the same, it’s nice to get a knowing nod, a virtual hug, and a bit of validation … even if we didn’t know that’s what we needed today.
Wishing you and your family the best of health.