Hey readers, this is a guest post from my sister-in-law, who also suffers from ME/CFS.
Let me compare CFS/ME to trying to live life with high roller friends while operating on a minimum wage salary. There’s some justice in this comparison. Think of it like this: all your friends and family are loaded with money—so much they take it for granted, and spend it freely. They don’t even think about it. Spending money is like breathing in and out. The most natural thing in the world. Cars. Jets. Charities. Vacations. This is their life. It’s what they are used to and they’ve never known anything different.
Your friends love you and want you to be with them. Of course, you want the same, but you’ve got thirteen bucks to your name and that won’t go very far on a high roller lifestyle. You have to stretch those coins out very carefully, and often creatively, just to get the bare minimum done with them. And they hardly cover the most basic needs, much less luxuries.
You explain your situation. And they understand, or… they try to understand. They offer to pay your way. They’ll cover the travel. They’ll cover the cost of the meal. But even then, you’ve got to wear something. And that dress and shoes are going to cost you. But you want to be with your friends and family, so you go into debt. And you go out and you smile and you take those pictures, and you clink your glass in that toast, but the cost of the dress and shoes is in the back of your mind all the time. You’ll have to pay for it.
And you do. Several days, or weeks, later you surface again and you see your friends and they invite you to a gala, but you’re still half shattered from the last experience. You shouldn’t go out again so soon. So you decline, and they try to understand, but they go away hurt anyway. You go away, lonelier than you can remember having ever been.
Invitations come less frequently, but you can’t give too much thought to it, because the bills are coming in and you can barely keep your nose above them. And you have to parse out that money so carefully, just to do the most basic things. Keep your child and husband fed. Clothed. Safe. Manage your work as best you can, pinching pennies and cutting back, going hungry yourself half of the time because you need the money more than the flesh on your bones.
It’s stressful, because you want that connection to the outside world, but you simply can’t afford it. There’s guilt as well as stress, and a gnawing hunger for an existence not quite so suffocating—not quite so narrow, but again, the stress only makes things worse. It comes calling in the persona of creditor. And if you believe in it too much, suddenly even the breath in your nose costs you and you know that you’ll never see your way out of debt—even the brief reprieves are only temporary.
Occasionally—only occasionally–you wonder what ever happened to your dreams. You look at yourself in the mirror and you see a husk of your former self, and still you guard that self and all it represents, because you must. You have debts to pay with it.
And your friends and family make excuses for you, but some few of them (in an ungenerous moment) wish you would try harder to be in the land of the living. Your child feels resentful and deprived. And she is right. She wants you and can’t have you. You are already quartered and sectioned off to the creditors.
The thing about CFS is it’s not money, but it’s energy you haven’t got. And healthy people have energy in spades. They take it for granted and can’t understand what it is to have such profound weakness and relentless pain without any explanation. Can it possibly be real?
Let me answer that question.
Yes, chronic fatigue is real and its victims are many. Our disappearance is not for lack of effort. Not for lack of determination. Nor for lack of heart or nerve. We slave invisibly under debts you cannot imagine. And you—you who have your health. You are the one percent to us. So extraordinarily, so unattainably rich. Do you know how wealthy you are?
We wouldn’t wish you any less. Take your abundance and do well with it. We simply wish you knew your wealth.