Chronic Illness, Survivor’s Guilt & The Stonecutter’s Creedo

Looking back over the last few months of posting, there has been an excessive amount of heaviness and uncertainty. See here, here, and here. The future is bright, but I keep looking into the rear view mirror at the abysmal black hole I’m leaving behind. I believe, wholeheartedly, that good things are coming my way. Yet, that hope is carrying with it a parasite, a small child tagging at my skirt hem, a sense that I’m not worthy or deserving of things to come.

I spent nearly a decade of my life with debilitating chronic illness. During my twenties and thirties, I lost friends, hobbies, my home, my career, and freedoms such as driving. I lost my youth. Now, after five years of aggressive, targeted treatment and countless sacrifices, I have largely recovered. I am healthy. And while I am truly and eternally grateful for my healing, I think I am beginning to understand where the discomfort is coming from.

After years of empathizing with other undiagnosed sufferers and then the chronically ill, suddenly I’m looking in on those old friends from the outside. I’m taking a walk in the park–literally and figuratively–while they peer out the window at me with envy. And I feel guilty. Do I retreat into the shadows and hope they forget about me, or do I turn back and try to offer help? I keep oscillating between feelings of hope and helplessness.

Survivor’s guilt is a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic or tragic event when others could not. While I don’t believe the definition traditionally applied to chronic illnesses, I think that it can. And a quick internet search confirms this. The chronically ill develop strong feelings of comradeship with those in similar situations and, at least in the case of death, surviving patient may experience significant distress.

I suffered a mysterious constellation of symptoms for four years before I gave up on western medicine, drained my vacation fund, and saw an integrative physician. In the five years since, I’ve amassed twenty diagnoses, undergone dozens of expensive tests, and tried numerous diets and supplements. I sold everything of value and trimmed all non-essentials from the budget. I’ve adhered to a strict sleep schedule, applied depressing dietary restrictions, and have lived like a pauper to manage expensive adjunct therapies and practitioners that don’t accept insurance. And, after five years of dedicated effort, I have recovered. I earned it, but do I deserve it?

My thoughts keep bringing me back the stonecutter’s creedo:

“When nothing seems to help, I go and look at a stonecutter hammering away at his rock perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that blow that did it, but all that had gone before.”

— Jacob Riis

My recovery is due largely to my own efforts and my willingness to sacrifice all else for the possibility that one of the treatments may work for me. Most people do not recover from chronic illness, especially after nearly a decade of damage. I am one of the lucky ones. I have achieved healing, but I’m left standing alone at the finish line. And it’s a lonely place to be, somehow trapped between the worlds of the well and the chronically ill.

I want to help people suffering from chronic illness. I want to provide tools and resources and hope. Yet, so much of what I am applying to repair my own body is unconventional, ungodly expensive, or legally questionable. And I spent tens of thousands of dollars on failed tests and treatments to discover my magical concoction. My suggestions may help. But they may lead to resentment if unsuccessful. Yet, they may plant the smallest seed of hope.

Recovery is possible, even if you’ve already lost all but a sliver of hope. It really is. It may take everything you have, but the body is wise and will heal if we provide it the right tools and nourishment. It’s the hundred and first blow that may break the spell of sickness.

To those still ill, I’m coming back for you. I don’t know how I can help, but I just can’t bear to leave you behind.