For the chronically ill, life can be a long, drawn-out solitary affair. Over time, well meaning friends and relatives can drift away. The people you used to see in the stores, the bank, are no longer part of your life if you're too sick to leave your house.
Someone made the observation to me once that people are at their best during a crisis. If you're very sick for a short time some folks will be right there for you. But when something drags on ... Especially if it drags on for years ... Something like, say, Chronic Fatigue Syndrome ...
Everything they knew to say has been said. Everything they knew to do has been done. Your CFS is, in a sense, no longer an upset to the status quo like an acute illness would be. Your CFS now IS the status quo.
They have gotten used to it. What they don't understand is, you have not. You will never get used to it.
And what is old hat and part of the furniture for them is not a routine part of your day no matter how long you've been sick. You are no more "used to" the limitations and loneliness than you were three years ago. Ten years ago. Twenty-five years ago.
And even the nicest of chronically ill people will have times of fury over the fact that very few seem to bat an eye over the loss of their life. People who could do something to ease the grimness of any given day, have long since stopped. And we wonder, "With friends like these, who needs strangers?"
When I was healthy I was very active. I did a lot for the people I was involved with. Did it because I loved to make a difference. Did it because I wanted to. But after I got Chronic Fatigue Syndrome I was astonished to discover that it wasn't mutual. All these people I'd made a difference for — none of them were interested in doing that for me.
If I think about it for very long, an incredulous anger wells up inside me. So I prefer not to think about it much. But before my recovery began, when my days were spent in bed or in a chair by a window, you can bet this weighed heavily on me.
When I began to recover and made faltering outward steps, there were no celebrations, no ticker tape parades, welcoming me back to planet earth. No one from that old life I'd lost came to visit me. No one invited me out for lunch. No one suggested going for coffee or to the beach.
These were all conscientious intelligent people. I'd still have to say their affection in the past for me had been genuine. What to make of this?
It seems to just be something that happens. Healthy people have no inkling of what it's like for a person who is chronically ill. The emptiness. The alone-ness. I did it too back when I was healthy and didn't know any better.
A short visit, a small gift, a phone call or note, can make such a difference when absolutely none of these things are going on.
I'm writing for the chronically ill who go through this, to say, you are not alone. There isn't something wrong with you if you get angry and your whole view of life has been turned upside down by illness and by being dismissed.
And I'm writing this for the healthy ones who have been oblivious up till now, but who want to make a difference. Go in and find your sick friend. Don't expect them to come out and find you.
The playing field is NOT level despite what you may think you see. The onus is on you, if you care enough.
I spent 15 years losing the battle against Chronic Fatigue Syndrome. Four years ago, I found treatment that worked for me, and now I am making a comeback.
Edited by Alison Stanton