You might see me on the street in my town, or chatting with the clerk at a store. I might look healthy and bright-eyed and ... fine. I might look just fine. But it's the darnedest thing, you know? Because, I'm not. I'm really not. I have Chronic Fatigue Syndrome.
Here is a key for having some idea whether someone who says they are ill really is ill. If taking their word for it doesn't work for you, this is what I suggest. Look past the things you know they can do. Look a bit deeper, to the things they don't do. Can't do. And that will tell you more clearly whether this person is "really" disabled or faking it for some bizarre reason.
Myself, I tend to take people's word for it these days. The payoff for most people in pretending to be sick is pretty pitiful. Most people are just not going to choose to watch their life wash away for the "pleasure" of not having to work, not being able to earn an income, and having to worry about whether they can keep their hydro on.
And most people who are able-bodied are not going to choose to embarrass themselves, and set themselves up for dismissal and avoidance, by announcing that they have a disease with a ridiculous name like Chronic Fatigue Syndrome.
But I digress.
As I was saying, here is a key to having some idea what's going on. What aren't they doing? What can't they do?
In my case, I'm not standing on my feet for more than a few minutes at a time. I have orthostatic intolerance and become quite light-headed and out of breath, numb, brain-dead and tingly if I stand in one place for even five minutes.
I have a CFS brain and can't deal with numbers after the first blush. For instance, I can tell you how old I am, and how much money I have on me. I can even comprehend if you tell me what time it is and when you have to leave and how long it will take you to get where you're going.
But I will beginning to fizzle if you tell me how many miles you get to the gallon, how long it takes to get from here to there on this highway or that highway (and they are named with numbers!). I can only last a minute calculating pounds to kilograms and back (a must if you're Canadian).
I could not, for instance, stand behind a counter in a store for more than 10 minutes at the outside, running a cash register, giving change, answering questions, giving refunds or store credit.
I am no longer able to do these things, though I have done them easily in the past, before I got sick with CFS. If my life depended on being able to carry out these basic skills, well, then ... I would be dead. Because they are impossible for me.
And that, my friend, says Disabled.
My husband doesn't look disabled either. He doesn't look like he has fibromyalgia.
He runs the errands when I can't, he shovels snow in winter, mows the lawn on a rider. Climbs under the car to work on it, to keep it running. Does the same for our daughter's car.
Cleans the eavestrough, makes home repairs. He does more physically than some healthy men do.
But while you may see him taking care of these tasks, you won't see the days that he can hardly drag out of bed because he has FM. The days that he spends curled up in the shape of the letter C recovering from some exertion.
You won't see him when he is unable to walk -- usually only for a day or two but each time this happens we're all terrified that this time he won't get past it. You won't be aware that in the late afternoon he lays down for a nap and if for some reason that isn't possible for a few days at a time, he really starts to feel it.
And you won't know the frustration that this formerly very active man feels every moment of the day when he looks at the things he'd like to accomplish, used to do with ease, and now they are impossible.
So why does he persist in these activities if they drain him and cause him setbacks from FM? For one thing, because they have to be done. And even if I were capable of doing them (which I'm not) he is the kind of man who would not want his wife having to do them.
He is an old-fashioned man in some ways and a romantic. Chivalrous till it hurts. (And it does.) He is also the kind of guy who used to revel in raising a sweat, in the satisfaction of a job well done, of beating the other guy in a competiton fair and square.
And I think maybe he would say that not being able to do anything at all is too close to being dead. So he does what he can, even knowing fibromyalgia will make him pay for it. Because he's really not physically able to get away with it. Because ... despite what you think you see on the street ... he's disabled.
People can believe this about the both of us or not. We live with the reality of it every day. And we are too busy trying to survive to give a crap whether we pass muster with anyone or not.