Skip to Accessibility Tools Skip to Content Skip to Footer

Stuff We Tell Ourselves About Having Multiple Sclerosis

I have MS but MS doesn’t have me.

The quality of my health is 99 percent attitude.

God has a plan for me.

I have no freaking idea what’s going on and I don’t want to know. I just want to get in bed and nap, then wake up and realize it was all a bad dream.

Why do we tell ourselves this stuff? Because we developed multiple sclerosis and it made our lives jump the tracks and career onto a torn-up highway ramp to nowhere. What once was a trolley is now a runaway bus, swerving uncontrollably while we scream in terror, auguring what is to come in all its horrifically-imagined driving-way-over-the-speed-limit thrillingness. But the future has become the present and we’re plodding along much like before, still recognizable, and mad as bloody hell whenever people tell us that we look bitchin’ even though it’s a compliment. Fear has gone and indignation has taken its place. We’ve suffered silently, stoically, and this is our reward? That people haven’t developed X-ray vision and can’t see our damage? Oh, the horror, the horror. What is the point of suffering if we can’t wear it for all to see?

We would do well to endure it; something will take the place of indignation someday, and then something else will displace that, and a different thing after that, and we can’t even guess what those things will be. Because there’s one fact that pushes everything else to the margins: Life is not static. Constancy is an illusion. Change good, fire bad. Let’s own it and drink our espresso before it gets cold.

Of course, it’s easy to embrace that idea in a positive way if you are independent and in charge of your daily activities, feeling relatively pain-free and sleeping well. Chronic and acute discomfort and sleep deprivation jar us into a suspended state of despair, convincing us that this devilish thing is as fixed, fiery and eternal as Dante’s fifth circle of Hell, where angry, sullen sinners (read that as wrathful people with MS) are forever doomed to stew in their own bitterness. Brain chemistry fixates us on despair, demanding our undivided attention so we can take care of the problem and not die. But even if we can move out of despair, MS can make our immune systems destroy one or more of our senses, too. Optic neuritis can make the world look like a homeless guy just sprayed your windshield with India ink. And that’s only a tiny piece of what goes on inside us.  What happens on the outside is bigger and even less predictable.

A colleague recently raised my consciousness about the fact that the vast majority of MS patients show no symptoms and do not use walking aids. Their status is often labeled “mild” MS. Perhaps it is the bestowing of such labels by the able-bodied “other” that makes us fret the most. It’s like the difference between being handicapped and being disabled. Disabled is an evidence-based medical designation, whereas handicapped is a restrictive, non-professional judgment conferred on us by able-bodied club presidents who will never see us as whole and worthy of admission. For many of us, the angry legions that patrol grocery store parking lots, those billy club-wielding vigilantes that come at us swinging if we park in a blue space without their approval can be as frightening, maddening, traumatic, and disabling as a sudden fall in the bathtub when there isn’t another soul in the house. The world is a scary place indeed, and that was true back when our status was healthy and able-bodied. We attended baseball games where pushing through throngs of fans at the stadium was slightly risky but usually little more than an annoyance. Now it is an accident waiting to happen. All it takes is getting jostled by one passionate baseball fan in the mezzanine and you are splayed across two plastic seats with Bud Light dripping off your cooling vest. Kinda makes you want to tell yourself some new stuff so you can feel a little more in control of your life.

We tell ourselves stuff all the time. We growl ultimatums when no one is listening because we have no intention of following through. If one more A-hole gives me the fisheye in the parking lot I’m gonna. . . Gonna what? Stop buying groceries? Whack the guy with my cane, get arrested for assault, and spend the night in jail without my medications? Yeah, that’ll teach ’em. Anything I can think of doing will only hurt me, which is freaking hilarious. This is usually where I burst out laughing at myself. It’s a good thing, laughing at our endless frustration, if only for the simple reason that it means we haven’t completely lost our minds.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Laura Kolaczkowski
    3 years ago

    Kim, in place of spending money to go to therapy it seems all i have to do is read your articles to reset my brain and my attitude. thanks! Laura

  • Julie
    3 years ago

    You made me laugh! Not at you, but at me. So many truths in your piece. I know we can’t do anything about the people in the parking lot that give you the stinkeye but I really am tired of the looks. Once while waiting for my grandkids waiting to come out of the school, a teacher walked up to my window and said “you know this is a handicap spot”. I told her yes I did know and I have a handicap license plate. She actually walked around to the back of my car to see….what? if I was making it up? Sometimes people are just too much.

  • Sue
    3 years ago

    Great.
    I remember about 12 years ago having benign m s. Just injections everyday, but able. 8 years ago I retired, got a cane and a parking sticker. I remember the scooter, walker and leg brace. I’ve had the power chair for two years. when my husband transfers me in and out of the car and in and off the lift at the poot, I just wish people gave me the finger. 90 year olds offer me help. Sometimes I do dream that I walked a few blocks. Then I wake up

  • DonnaFA moderator
    3 years ago

    Hi, Sue, thanks very much for your comment, we hear you. Please know that you can come here anytime, there are many people in the community who understand what you’re going through. We’re always here to share information, support or just to listen. -All Best, Donna (MultipleSclerosis.com team)

  • skcullers
    3 years ago

    Couldn’t have said it better! Thank you. Woke up this morning thinking another day to get through in this miserable hot summer. Seems this one has been a doozie to manage. Isn’t the hardest challenge to realize the day isn’t going to be the day you wanted it to be and be okay with that?? Laughter in the end does save us!

  • @masbrautigam
    3 years ago

    Love it!!!!!

  • Poll