A number of years ago I listened to a Fresh Air interview with the author Nathan Englander about his book What We Talk About When We Talk About Anne Frank. It’s a great book, if you haven’t read it, and it was a wonderful interview as well.
For all those years, the idea has stayed with me about what we talk about among a group of like people — in this case, those who have multiple sclerosis (MS) — as opposed to what, or more specifically how, we talk about it with people who don’t. Although it’s the same umbrella subject, my experience with these two conversational cohorts falls into two quite different topics.
What We Talk About With Those Who Don’t Have MS
For those who do not have MS themselves, I find that we talk about what I refer to as the scaffolding of the disease itself.
These conversations usually consist of me answering questions about what MS is, what it does, how it manifests itself for me versus someone they might know with the disease, and how they might have thought differently. There are also those (very short) chats in which someone tries to tell me about my disease and how they know someone who cured themselves or how I should live to make my disease better.
Those are very short chats, indeed.
I don’t mind the first, more educational, set of questions and answers. I’ve done my research and have learned to be gentle with my responses if the questions come from a place of caring and real desire to understand. They aren’t fulfilling chats for me. They feel more like my duty as a person living with a difficult-to-understand disease to perform on behalf of our entire community. We are all, after all, ambassadors for our MS brothers and sisters, even if we didn’t seek out the posting.
What We Talk About With Others Who Have MS
The back-and-forth with someone else trying to get on with the business of actually living life with an incurable, degenerative, oft-debilitating neurological disease … those conversations feed the soul.
The funny part is that we seldom talk about MS — the disease — when two people with MS sit down and talk about multiple sclerosis. We talk about living with the disease.
We share life hacks, we talk about challenges, we discuss the healthcare system. It’s not uncommon to talk about the people with whom we talk about MS (the first group above, as well as those “short chats”).
We are looking to one another for commonalities as well as diversities. We commiserate and share our fears. We celebrate and relish our triumphs, no matter how minor they might seem to others.
A Sort of Shorthand Can Be Used With Others in the ‘Club’
When those of us who have MS talk about its difficulties with others in “the club,” we use an implied version of a phrase I’ve become accustomed to here in Ireland over the past several years: “Yara, sure. You know yourself …”
We mightn’t use those words exactly, but that’s what we’re saying (and not saying) in our response. It’s a code only members know.
There are other Irish phrases which, I’ve found, fit into these conversations as well. “Tipping away,” “Getting on with it,” “Look, sure …” They all say what we know they mean without having to say it all out loud.
It’s something of an MS shorthand, and it doesn’t need an answer that will fix it. Those of us with MS know that’s not what we’re looking for, so we don’t offer it up.
It’s Important to Have Others With MS to Talk To
I suppose the most important thing is that we have someone with whom to have this second set of conversations. Someone who knows without us explaining.
Not everyone has that person or those people in their physical lives. It’s why online forums and social media pages, like our Facebook page, can be an invaluable resource when you don’t have or can’t get together with someone with MS whom you trust.
What do we talk about when we talk about MS? Well, I suppose it depends on if we are talking to someone about the disease or we are talking with someone who has it. And what we say is sometimes more about what we don’t say.
Wishing you and your family the best of health.
Cheers,
Trevis
