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5 Lessons I've Learned From Chronic Illness in 5 Years

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However I mark the onset of my illness, I’m more than five years in. Whether I start the clock in the spring, when I was struck with a thunderbolt fever, or the following summer, when I found myself growing increasingly exhausted or in the fall, when chest pains finally sent me to the hospital — I’m five years past it all.

By winter, ill health had forced me out of the family business, and since then, most of my previous goals have become unattainable. At an age when I’d hoped to be enjoying my empty nest, I’m mostly confined to it. No hikes in the desert, no travel to far-flung destinations, no earning a living or saving for retirement. Activities are planned around my need for rest, and each exertion must be carefully weighed.

Still, I’ve learned a lot — so much. Some of what I’ve discovered has been disturbing. Much of it has been enlightening. And a little of it has even been inspiring.

Here is what I know:

1.  If you crave attention, being sick isn’t the way to go.

There seems to be a generally held belief — including among some health care professionals — that patients who “refuse to get better” might be seeking attention. As one of those patients, I find the idea fairly ridiculous. The truth is, chronic disease is a ticket to isolation, not attention.

I learned early on I could judge how people would respond to my illness by what sort of friend they’d been before. Those who’d loved me, still do. They don’t question my account of my symptoms, and they continue to support me however they can. Work friends and casual friends mostly fell by the wayside, as they would have if I’d changed jobs or moved away — which one could argue, I did. And those who were, ahem, never really on my side? Let’s just say the news of my illness didn’t bring them to my door with a casserole and flowers.

By now, my illness has lost its novelty even among those who care for me most. Newer concerns have taken its place, and although I can always count on a sympathetic ear or a shoulder to cry on, my disease is no longer the main topic of discussion. I’m OK with that — it’s as it should be. At the same time, I can say with great sincerity neither I nor my ill friends are drowning in attention. Chronic illness is a solitary gig. Most of the struggling is done alone.

There isn’t a cure for every disease, but many believe there is.

I was guilty of thinking this way myself before I grew ill. I guess with all the talk about fundraisers and studies and breakthroughs, I assumed in this modern age, all diseases were, under control? If we couldn’t actually cure a disease, we certainly had ways of diagnosing it, slowing it, treating it. And those cancers and genetic diseases we couldn’t stop — at least we understood them, right?

Wrong. My own disease, myalgic encephalomyelitis (ME/CFS), affects millions around the world, yet there is no cure, no approved treatment and the cause remains a mystery. Who knew? I certainly didn’t. I had no idea at the age of 50 I could suddenly — almost overnight — contract an ailment that would disrupt every aspect of my life, and that would take nearly five years to find a physician who could give me any real information about my disease.

We are in the dark ages when it comes to many conditions, ME/CFS included. When we fail to acknowledge the fact, we heap yet more pain on those who have fallen into the black hole of medical ignorance.

What doesn’t kill you doesn’t always make you stronger.

We live in a world where we’re encouraged to chase dreams and climb mountains — to challenge ourselves and our limits. If anyone was simultaneously screaming we should listen to our bodies, I, for one, didn’t hear them. One of my main regrets today is I didn’t take better care of my body when I had the chance, that I didn’t slow down when the warning lights began flashing. And I’ve heard others with my disease express the same remorse. We believed we could do it all.

The spring I grew ill, I was working full-time at the family business, writing part-time for a newspaper, working on a novel, and managing a household. I look back now and I’m appalled at my lack of self-care. When I came down with the fever that began this journey, I took one day off work. Ten days later, with the fever still simmering, I finally went to the doctor and was diagnosed with pneumonia. On my way home, I stopped to buy a vacuum cleaner for our business. I was cavalier with my health, and I will pay for it for the rest of my life.

Please, my hardworking, selfless, tough-as-nails friends, take care of yourselves. Learn your limits, and love yourself the way you love others.

I’m one of millions.

Until I grew ill, I had no idea how many people are affected by chronic illness. Behind a curtain of pain live vast numbers of bed-bound, homebound and nearly homebound individuals struggling to make the most of lives that have become both utterly challenging and alarmingly invisible. Nobody asks for unending sickness. Nobody deserves it. Yet, in my online travels, I’ve encountered many who’ve spent an incredible 30 or 40-plus years with my own disease — decades during which they’ve survived disbelief, illness-induced poverty, societal indifference and even abandonment.

The courage of these warriors amazes me, in part because they did it without the internet. Yes, social media has its drawbacks, but I have no patience for purists who insist it’s ruining the world, because I know that, whatever its problems, it’s also saving lives. The chronically ill and disabled depend on the internet for information, society and even friendship. Having an online presence gives us a voice, power in numbers and a way to make a difference. Isolation can kill. Thank goodness for social media.

Grief is real, but it has a shelf life.

I’m not sure how far into my disease I was when I first Googled “grief and chronic illness.” I do know that, even then, I thought I was being premature. Sure, I’d been sick for a while, but I’d get better. This wasn’t a permanent situation. I was just experiencing a learning moment? A health glitch? Other, very unfortunate people had chronic illnesses. Not me.

That’s denial, folks — one of the five stages of grief, according to the Kübler-Ross model. The others are anger, bargaining, depression and acceptance, and I’ve spent pretty much every minute of the last five years getting to know them all. For me, grief comes in waves. I can feel like I’ve conquered it in the morning, and by evening know I’m far from finished. And the trickle of information hasn’t helped. It’s not as if I lost a limb — quick and dirty. My first few years were filled with misdiagnoses and confusion. There was room to hope because I had no real answers. I could postpone adjustment.

Five years in, I can finally see myself pushing past my grief — really. I’m beginning to look ahead again, to make plans that incorporate my altered reality. I see my disease as a giant boulder in the middle of my house. I’ve tried moving it, chiseling it smaller, even throwing a blanket over it. Now, I’m learning to live in the space that’s left to me — to dance in the corners, and get all I can out of the area that remains.

In his excellent book, “Man’s Search for Meaning,” Holocaust survivor Viktor Frankl writes: “When we are no longer able to change a situation — just think of an incurable disease such as an inoperable cancer — we are challenged to change ourselves.”

It’s been five years, and I’m happy to report, though my sickness hasn’t changed, I have. And in that fact alone, there’s hope.

Unsplash image by Jamie Street

Originally published: May 22, 2021
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