The Lifelong Task of MS Disclosure
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I recently did something I hadn’t done in a long time: I told someone about the fact that I have multiple sclerosis (MS).
This occurred in a small bakery-café, new to my town, where I’d gone to collect a loaf of focaccia and down a café allongé (but I just call it a long espresso, so as not to sound like I’ve notions).
One thing led to another as I was talking to the proprietor, and the topic of my MS came up.
We were discussing my upcoming trip to the United States to record the audiobook version of my next publication. Questions were made about whether this was another in my Dinners cookery book series (which so far includes Dingle Dinners and Burren Dinners), and I explained that I was back in the world of MS with this book.
Anyway, 30 minutes passed, and then I headed off toward home with the dogs, trying to take advantage of a break in the rain.
A Timely MS Disclosure
As we made our way, it dawned on me that I had effectively just disclosed my MS to this woman. And as luck would have it, disclosure was the topic of the webcast I was hosting that very night.
My experience brought to light one of the aspects I had hoped to touch upon that evening: We don’t just disclose our disease to people in the few months after we are diagnosed. It can be a lifelong experience. It can also be re-traumatizing if we’re not ready for it.
I live my life with MS pretty loudly. That’s to say that I don’t hide the fact (it’s pretty difficult to hide), as I’ve been writing and speaking about it for over two decades. I don’t live “under” the disease, I try to live with my MS.
The experts on the webcast talked about the importance of timing when it comes to disclosing at work, the emotional toll that not telling can take, and the perils of oversharing as well. All pretty standard stuff for those who have lived with MS for a while.
But the understanding of what disclosure can do to our mental self along the way was important to note.
Who We’re Telling, and Why, Makes a Difference
I took the opportunity of telling that day at the bakery-café as one of education and interest. Sometimes, however, telling someone new (or telling someone you’ve known but who doesn’t know about it) can bring us right back to those early days of disclosure. The reactions we receive and the questions we get can tear off the old bandage and the self-preservation scab we’ve developed over time.
Disclosing to a new romantic interest on a date, preparing to tell your children after a number of years when you deemed them too young to know about it before, or interviewing for or starting a new job can all be as stressful as the first times we had to or decided to tell those close to us.
There’s Always Something New to Learn
I found our discussion with two professionals (one an employment law specialist and the other a psychotherapist) and two women living their best lives with MS to be one of the best Unspeakable Bits webcasts that we have done to date — and we’re a year into them.
I wrote the program and was hosting. I also learned much from our panel, and the fact that I’d just disclosed that morning seemed important to share. We all have new experiences with MS every day. Some are better than others, but they are our experiences, and they’re all part of living with MS.
Wishing you and your family the best of health.
Cheers,
Trevis
My book Chef Interrupted is available on Amazon. Follow me on the Life With MS Facebook page, and read more on Life With Multiple Sclerosis.
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