Living with chronic physical illness, why are we invisible?

artBelow is an excerpt from a paper written about the casualties of CFS by someone who lives with CFS. What she writes, however, is relevant to anyone with any number of chronic illnesses. It has become my reality too. I can no longer take care of myself and it’s a chronic problem for which there is no certain end in sight.

The drug toxicity has rendered me physically disabled. I am blessed to have one “consistent” person, my husband. Many have no one and certainly my husband has no one helping him help me. He works full-time and then must care for me as well.

People oddly, seem to scatter like the wind when someone is ill. I saw it when I volunteered in hospice. Yet dying is a recognized medical need. After all, hospice, with professionals and volunteers, is a service that is in place for most people.

There is nothing in place for those of us with chronic illness. And we need just as much care and often, for much longer.

Is there someone in your life who could use some groceries? Could you pick up a few things for them while you’re at the store? Could you maybe clean someone’s kitchen or maybe just hold someone’s hand while they lie in bed? Small, consistent kindnesses make a world of difference in the lives of people who cannot take care of themselves.

I should comment that the author of this article, if you read the whole thing,  is speaking of people who have it even worse than I do in the realm of resources. People without a spouse and perhaps without an income. I could, indeed have it worse. I try to be grateful for that which I do, indeed, have.

The excerpt from A Postcard from the Edge, by Gina Kerner:

A prevalent American belief is that there’s help for anyone who needs it. Along with this belief comes the apparent assumption that the obligation to help belongs to someone else. Service agencies assume that church, family and friends will help; families assume that friends and social services will help. Around and around it goes.

It’s true that some people are already overwhelmed. They’re scrambling to pay the bills and get the kids to school and, for a gamut of reasons, cannot add to their responsibilities. Yet I’ve encountered people capable of extending a hand who make conscious decisions to change nothing in the trajectory of their lives. No space is made to embrace the life of a disabled friend or neighbor if it means shaking up the status quo (which it often does). The inclination to remain undisturbed is so pervasive that even well-intentioned people can sometimes get ensnared by it.

Kind people refuse to learn the facts of our disabling symptoms. Moral people don’t inquire about what we need. Ethical people overlook our cries for help. Even people who claim to love us often keep a distance rather than feel grief. The comfort zone is so inviting that even good people sometimes stand together behind its protective walls as if there’s nothing they can do to help.

In short, people of otherwise good character aren’t immune to the unquestioned beliefs and excuses held by the society that molds them. As a result, some of us who are disabled by CFS have been left largely in the fringes to fend for ourselves when we cannot.

Yes, there are compassionate people who show concern enough to help. But others offer “random acts of kindness” and no more. The rare ones stand by consistently. And since consistency (of food, shelter, income, etc.) is in short supply for those of us in dire straits, that ongoing understanding and support alone can be an essential ingredient for survival.

I live in a small town. Still, I’ve met many people with CFS surviving in extremely rough circumstances. So I conclude that there are likely people with CFS living in dire straits everywhere, in significant numbers.

If society, one person at a time, would confront the marginalization of its sick and disabled members, surely insight would shed light on the mistakes that leave some of us unseen and unattended. Then these valiant, weeping lives could be acknowledged, represented, embraced, valued and assisted.

We would appreciate that. (click here for the whole paper)

And the thing that hurts the most? All the people who say they’ll come by who never do.

I’ve discovered yet another under-served, oppressed population. It never crossed my mind this could happen to me. Perhaps that is why others stay away. Is it the ghost in the mirror? A scary visage of what can happen to any of us at any time? We are potentially all so fragile.

See also: More on When Friends Disappear During a Health Crisis

More info, comments and links for those with chronic illness: Information and inspiration for the chronically ill

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters