Disabled? Don't Feel Guilty

"It’s your own damn fault that you’ve got MS. Not only are you fat and lazy, but you’re probably faking it anyway."

It’s not likely you’ll hear anyone put it quite so bluntly, but all too many MSers get exactly that message in a different wrapper from their oh-so-concerned loved ones, or from the latest TV show about the dynamic personality who has "overcome her illness" with the help of prayer, a sunny disposition, regular participation in the Boston Marathon and weekly espresso injections.

Guilt and its mongering take many forms, and some of them are truly insidious. We’re a fairly sophisticated society these days – or at least we think we are -- so you don’t hear too many preachers ranting about MS being God’s judgment on a misspent life. That particular tactic is reserved for AIDS and other illnesses that strike at people who, in the eyes of some, have it coming. So let’s thank the Deity for small favors: MS isn’t sexually transmitted, passed through IV drug use or disproportionately found among liberal atheists. At least we can listen to talk radio without fear.

But that doesn’t necessarily keep the other forms of guilt tripping at bay. My personal favorite is "stress." Tell someone you’ve got MS and it won’t be long until you’re asked about your divorce, whether you work too hard (as if you had a choice), whether you were ever cut out to be a mother or whether your granddad’s death was the final straw. This invariably will be coupled with heartfelt advice to "avoid stress" from now on.

Sounds reasonable, doesn’t it? Everywhere we look, we’re told that stress causes illness. MS is a really bad illness, so there must have been a lot lotta shakin’ going on. Yep, the stress did it. Must be.

What’s usually left unsaid, but clearly implied, is that if you’d only avoided that stress you wouldn’t be in this boat. Ergo, it’s your own damn fault. And if your MS should happen to progress – as it usually does, incidentally – well then it must be because you insufficiently avoided stress. Not that the implicit guilt trip adds to anyone’s stress. Moi? Why, I was only trying to help!

A kissing cousin of the stress rap is the positive attitude mantra. Be of good cheer! Look on the bright side. Visualize your happiness. Rise above your limitations. Translation: You’re bringing it on yourself, and oh by the way, I really don’t want to hear about your troubles. They’re too depressing.

Like all mythology, there’s a grain of truth in all of this. Someone who burns the candle at both ends is probably going to have more trouble with her MS symptoms than someone who gets eight hours of sleep. And there’s a fine line between candor and playing the sick role like a fiddle to put everyone at your beck and call. That said, stress doesn’t cause MS. Smiles, be they forced or genuine, won’t cure it. The author of Laughter Is The Best Medicine is dead. He is buried next to a lifelong curmudgeon. What's even worse is that we're all going to die.

My best friend’s sister has MS and she doesn’t let it get to her. She even jogs five miles a day. She says exercise is her cure. In other words, you’re malingering. The kind souls who deliver this message – too many of whom are entertainers eager to base their otherwise declining careers on being poster children for this or that disease – have never stopped to consider that MS is a highly variable illness. Oh, by the way, the "best friend’s sister" has a mild case of MS. Good for her, but plenty of other people have it bad.

Denial has another face: The unsolicited testimonials for the latest miracle therapy. Someone’s brother drinks a quart of flaxseed oil every week. A co-worker gulps down a special juice drink with a chaser of 10W30 motor oil. Did you read about that new drug that’s going to cure it? I ran into a guy at my high school reunion whose wife buys bees from Kansas and has them sting her every other day. He says she started walking again. I can give you her phone number if you want it.

What’s really going on here is a mixture of squeamishness and fear. We might regard ourselves as sophisticated, but human beings are afraid to die and a lot of people lash out at anything, including disability, that reminds them of their mortality. Every culture expresses it differently, and in America it’s seen through a relentless focus on "curing" or "overcoming" disease and handicaps. And we are tinkerers to the Nth degree. I made this in my basement. Try it! What have you got to lose?

There's a whole lot of good in these impulses, by the way. Let’s all hope someone devises an MS cure, and if winds up being a specially brewed beer delivered via an enema tube I’ll be first in line. But for now, we have a disease whose cause is unknown, whose effects are maddeningly unpredictable and that has no cure. In other words, we have a chronic illness. Americans are terrified of the chronic. It reminds us of welfare. We want to fix our problems, and if we can’t fix them, we can get pretty weird about it.

For those who don’t have MS but are reading this perhaps because a loved one or friend does, I have some friendly advice by way of Bob Dylan:

Take care of all of your memories, said Nick
For you cannot relive them
And remember when you're out there tryin' to heal the sick
That you must always first forgive them.

So quit the guilt trips. No one knows what causes MS, so we really don’t need or appreciate any amateur psychoanalysis about our sources of stress. There’s no cure, so don’t tell us about the "detoxification" program you read about in some magazine or how a positive attitude can make an illness disappear.

We’ve got our good days and our bad days. On our good days, greet the day with us. On our bad days, put up with us and maybe offer to do the grocery shopping or something else that might be useful. Above all, just be there. Notwithstanding everything I’ve written up to this point, don’t kill yourself if you say the wrong thing every now and then. We’ll get over it. No one’s perfect. Really.

To MSers, some friendly advice. Don’t buy into any of those guilt trips. If someone tries to lay one on you, try to be gentle. These are usually teachable moments. Most people say the wrong thing because they don’t what else to say. Just tell ‘em that no one knows what causes MS and no one has found a cure. You’re doing the best you can, and that’s going to have to be good enough.

If someone asks how you’re feeling and the truth is "not too good," then say so. Briefly. If you need help ask for it, and when you get it say thanks. If you need a cane or a scooter, use one. If you need some rest, lie down and have a nap. Above all, if you want to have a steak, a dish of ice cream and (horror of horrors) a cigarette or two after you’re finished, don’t let anyone or anything stop you.

It’s not your fault!