Reddit is often a scary place, but sometimes there are people and places that make it hugely worthwhile. One of those places is the Multiple Sclerosis subreddit. There’s often a lot of raw honesty (you can’t be squeamish, because there’s no such thing as TMI when it comes to being honest about MS). But there’s also a lot of compassionate people trying to help others through their diagnosis. Sometimes with honesty, sometimes with grim humor, sometimes with the kind of feedback that’s more usually found on the AITA subreddit (especially when dealing with insurance companies!). But it’s help nonetheless, and given how lonely a life-altering diagnosis can be, any helping hand can quickly become a friend.
One of the most common first-timer posts on the MS subreddit is a variation of the question, “Is it really this bad, or am I going crazy?” I’m well aware of this type of first-timer post because I was once one of those first-timers…except my first big diagnosis was ocular melanoma, and all I had for support was a lonely little backwoods forum run by a tiny non-profit foundation, instead of a massive, slick app with millions of users. I was swapping posts with people literally on the other side of the world, not because the OM forum was so big, but because it takes the entire world’s population to fill even a high school gym with people currently being treated for OM. That made it lonely enough. But even lonelier was the fact that OM can be a death sentence in a way that MS is not.
Horribly enough, I discovered that that’s one of the many ways MS patients gaslight themselves (and are sometimes gaslit by their caregivers!) in a way that cancer patients rarely do. MSers tell themselves that since it’s not a death sentence, their diagnosis disqualifies them from needing therapy.
I am happy to report that most users on the MS subreddit are quick to disabuse the first-timers of that notion. Sometimes just hearing that phrase “it’s okay, it’s not just you” is enough. But sometimes folks need more, and today was my day to help a first-timer over that hump.
So here’s what I wrote.
“Absolutely not a waste of a therapist’s time. Being diagnosed with a major disease requires a grieving process. Even if nothing at all happens physically, mentally and emotionally it’s a doozy. It’s the moment that issues like Life and Death suddenly become real, not cerebral or dream-like autopilot ideas. They’re suddenly my life, my death…and even if MS isn’t a death sentence, it forced a very hard look at my immediate circumstances and choices, plus a clear-eyed look at the road ahead.
I think of it like those minutes after a car accident–when what I thought was my day has suddenly, spectacularly, become a very different day. All the things I thought I was going to do (like pick up my kid, go home, pet the cats, make dinner) are completely and instantly out of my mental picture. I may be able to pick up those normal things again later, but first…I have to think critically about everyone in the situation, including myself (“Are you okay??? Am I okay??? Do we need to haul a$$ to safety or out of traffic??? Is the other guy belligerent???”). Once everyone’s safe I have to think about the hoops I’ve gotta jump through (“Is my phone working? Have I called the police? How about insurance? Who was at fault here? How do I communicate those facts with the police?”). Then, once all the talking is done and the reports are filed and the tickets are issued…then and only then can I start thinking about how to bridge this weird experience back to my normal life (“How the hell am I getting home? How am I getting my kid home? Can I afford to order pizza?”).
Those three stages are pretty much the immediate diagnosis, onboarding/initial treatment, and recovery phases of beginning life with MS. And just like a car accident, the trauma and injury can be very, very real.
So cut yourself all the slack. Do something free but nice for yourself. Give yourself the time and attention you’d give to a friend who’s just been in a wreck–the kind that may have totalled their car but didn’t total them. What’s been wrecked is your illusions about how your life was supposed to go. Thankfully, you yourself haven’t been wrecked. And you’ll hopefully find as you go through it that you haven’t lost nearly as much as you thought.”
The post kind of surprised me as I wrote it. Not because it’s deathless prose, but because while I’ve written about the “acute treatment vs. maintenance” divide in oncology quite a few times over the years for OM first-timers, I’d never quite made the association with a car wreck before. It lined up with my experience much better than the acute/maintenance terminology ever did.
I just hope it helped the first-timer as much as it surprised me.