Guest Post: Painful Lessons

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abdominal pain

It used to go like this: The nice doctor smiles and checks your heart, ears, and knees, pronounces you healthy, and off you go. Grab a lollipop on your way out! (Doctors used to have candy jars. Dentists used to give out toothbrushes.)  You are not yet 20! Life is good!

Then suddenly you’ve flown past 30. Cried over 40. Crept up on 45. And now, anything can happen.

Like this: I was having pain under my ribs for days. I finally went to the ER. Pancreatitis? Really? I had a follow-up MRI, because pancreatitis is for old alcoholic men; I was a tiny 43-year-old woman who can barely finish a beer. On results day, I perched on the edge of a big rolling chair as the doctor made an invisible circle on the computer screen with his capped pen. Here is your pancreas, he said of one mystery blob. And here—tapping a shadow on the blob—is the mass on your pancreas.

A mass on my pancreas.

The doc I saw next wasn’t convinced it was cancer, but he agreed it looked bad, and that surgery was the next step. (I disagreed. First, I went to China. I’d always wanted to go to China. Then, I had surgery.)

My surgeon later admitted that even with his gloved fingers prodding the tissue that had glommed onto my pancreas and taken over my spleen, he thought, damn. Cancer.

But it wasn’t. I had a very rare and little-studied autoimmune disease that causes fibrosis (growth of connective tissue) on organs that looks almost identical to tumor growth. No one knows what triggers it, so afterwards I had no idea what to do and not do to keep it at bay. But at least the gunky bits were gone for now.

Unfortunately, my pain wasn’t gone; it even spread. One thin blade sliced down my left hip, and another slid in just under my ribs; cramps in my belly curved around to my lower back and pressed into the hollow like a fist. My left leg ached, always. I felt twinges in my torso, chest, and shoulder and had the general feeling of wading through molasses. For three years I went to doctors and endured modern tests; I then revised my diet, withstood needles, and downed herbal tinctures. But I got no answers, no relief. I lived on pain pills. There was nothing to treat, the doctors said.

That’s the thing about a body getting older. It starts doing wacky things, and often no one has a clue what’s going on. You can tell doctors where it hurts, whether you’d rate that pain a three or nine, and if it is “sharp, dull, stabbing, aching, or numbing.”  But if you don’t conform to the normal patterns of physical crumbling, you may be on your own. And if you are a middle-aged woman, be prepared: Someone along the way will suggest you see a psychiatrist.

Now here’s the worst part, but the part that (I promise) leads to a happier place. It wasn’t the initial pain and unclear diagnosis, the surgery, the recovery, or the daily popping of pills that hurt the most. It was the helplessness. The worry. The what’s next? I’d get up in the morning and gaze at my weary face in the mirror…are my eyes tinged with yellow? Is my partial pancreas failing? Will another pain pill destroy my kidneys? Should I get blood work again?

While I’m at it, has that mole grown? Why the headache–is it a tumor? Does that cramp scream bowel obstruction? Did I sleep on my left arm funny or am I having a heart attack? You see, once you’ve had a medical surprise, you are primed to expect more of them. Worse ones. It’s the kind of angst that can make it very hard to get out of bed. In short, the more I worried, the more I worried. Some of you know what I mean.

But after years of letting this anxiety make me feel worse, I came that perhaps-obvious realization. No matter what, living under a medical cloud serves no purpose. I’m aging. We’re all aging. We all fall apart. We pick up what pieces we can, let the others lie. I’m already able to laugh at the stray chin hairs, brown spots, belly folds, so why not roll my eyes at each ache and move on? Can’t I treat pain like a bad neighbor, acknowledging it with a nod and then turning away despite the yipping dogs and uncut lawn? Turns out if rather than languishing I get up and dressed and out from under myself, I can get a few steps ahead of a bad day. And then, the key is changing where I am, or what I’m doing, or who is doing things with me, to enrich my life in spite of the hurt.

There’s science to back up both the chronic pain blues and the “change your environment” approach to living with it. (Here’s the study I’m about to talk about.) It turns out that long-term pain causes real alterations in brain activity and structure—in spots related to creativity, emotion, decision-making, and cognition. It can also produce hypersensitivity to pain, so pain just hurts more, leading to anxiety about the pain. For some people, then, pain is a life experience that actually changes gene expression in the brain and steals away vital gray matter. With tweaks to your physiology it can stomp out your vigor and replace it with depression and fear.

But the brain isn’t a stone. It’s more like a squishy ball of wires. The wires that pain yanks and twists can be untangled and reassembled to their original orientation. And studies have shown that an “enriched environment” can be a big part of that brain renovation. In mice that means a roomy cage, mouse friends, and toys. For me, that means yoga classes, good books, bad TV, walks in the woods with my dogs, and nights out with friends. It means getting up in the morning and noticing how I feel, but not scrutinizing, not criticizing. Moving forward in whatever way I can.

My pain is not as bad as it used to be. Besides some physical therapy that has done some softening, I’m simply doing more stuff, which makes the pain seem less intense, which lets me do even more—a vicious cycle, but the happy kind. My little bit of progress feels like April weather in November. And I love spring.

Does a clear explanation even exist for every twinge and pang? No. And trying too hard to find one takes you to a very dark place. And I don’t mean the Internet (though that counts, too). I envision an analytical eye within our brains squinting at every physiological misstep, letting nothing sneak by. That scrutiny sends our basest fears—of pain, of death—shooting to the surface.

Close that eye. Open your regular eyes, and look around. Stand up tall, stretch, go outside. Be with people, do things you love. Work in a different place; find a new view. As humans we share, inevitably, our mortality, but there’s still plenty we can do to soften its blow. Turning away from discomfort can be like pushing reset, telling the brain to let go of old habits and start fresh. The pain won’t be gone, but you might be too engaged in life to notice it.

illustration: toranosuke, Shutterstock

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Jennifer S. Holland is a contributing writer for National Geographic magazine and the author of two best-selling books about animals, Unlikely Friendships and Unlikely Loves. See more of her work at cuttlefishprose.com.

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10 thoughts on “Guest Post: Painful Lessons

  1. HA! I love you. I am going to save this for patients. As their physician, who does not share their chronic pain, they don’t believe me. This is helpful.

  2. Excellent post. This gave me some insight into how chronic pain is feeding into my depression, which I’ve been thinking about a lot lately. Better yet, it gave me some things to think about and try. Thanks!

  3. Thank you, this article is wonderful. It describes well how a dear friend of mine copes with chronic pain and illness. Her wisdom was a help to my husband while he was living with cancer, and an inspiration to me as I face life with a degenerative autoimmune condition. She lives this truth and we learned it from knowing her; but you have expressed it so clearly in words.

  4. I’m no doctor–I don’t even play one on TV, however, as I too am approaching my mid-life, I am concerned with my health. I have done my fair share of research and I have been implementing, Clean by Dr. Alexandro Junger–he also just came out with Clean Your Gut. I am also an advocate of wholesome foods and avoid eating anything that comes in a package often! Good luck to you!

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