Blog post,  Chronic Illness,  Lyme Disease

How I Became a Sick Person

November 1, 2021
Written by Ross Douthat — originally published by The New York Times — October 23, 2021

The long-term form of Covid-19 has something in common with other forms of chronic illness — strange and varied symptoms, lasting debilitation, no certain treatment. But unlike other such conditions, which tend to creep up on society, long-haul Covid arrived suddenly, creating a large pool of sufferers in a short period of time and afflicting frontline medical workers and younger patients in large numbers.

This created a sense of immediacy and urgency absent from other chronic-illness debates and a constituency for research and treatment among a population — doctors, especially — that’s often skeptical of difficult patients and mystery illnesses.

But already with long Covid you can see the usual structure of chronic-illness controversies reasserting itself. Recent articles in The Atlantic and The New Yorker cover the emerging lines of debate, which pit patient advocates urgently seeking treatment against scientists following cautious research protocols.

Meanwhile, among friends naturally inclined to skepticism, I can see the initial sympathy inspired by long Covid giving way to the doubtfulness that hangs around chronic fatigue syndrome, or fibromyalgia, or the chronic form of Lyme disease. Liberals who eye-roll at the enthusiasm for, say, ivermectin may do the same for the weirder experiments in treating chronic Covid symptoms. Conservatives who are critical of liberal public-health policies increasingly regard long-term Covid as a kind of blue-state hypochondria.

I understand these ideas because for a long time, despite close relationships with people who suffered from chronic illness, I shared some of them. Most notably, I shared a common idea of what chronic illness is like — imagining a kind of Victorian fainting-couch experience, a hyperactive fixation on tingles and twinges, an exaggerated version of the fatigue that comes after you’ve stayed up with a newborn or the aches you feel after exercising for the first time in months.

Then I got sick myself.

It was the spring of 2015, and my wife and I were moving, with our two young daughters, from Washington, D.C., to Connecticut, where we had both grown up. I had always nursed a fantasy of escaping the metropolis for rural isolation, and after our Capitol Hill rowhouse sold for an absurdly appreciated figure, we plowed the money into a 1790s New England farmhouse with three acres of pastureland, a barn and an apple tree, a guest cottage and a pool.

It was expensive, a definite reach, but we were young, energetic and healthy, and a reach was what I particularly wanted — a place that would force me outside, tear me away from the internet, the sedentary pundit’s life. On the day the house inspection revealed a daunting list of issues, I walked the overgrown paths on the property, watching a family of deer dart through the meadow. Then I looked up at the main house perched above me and thought with satisfaction: Yes, this is what I want.

A few days later we were back in Washington, having set up the closing dates so that we could spend the summer wrapping up our old life. It was a rainy morning. I awoke with a stiff neck and went to the bathroom to find a red swelling, a painful lymph node just down from my left ear.

I came out and sat rubbing my neck, and my wife came up behind me, her voice unusual: “Ross.”

She was holding a pregnancy test, the telltale strip faint but clear. Our third child.

But after I fist-pumped and we embraced, after I went out into the rain to take our daughters to their nursery school, my mind and fingers kept circling back to the discomfort in my neck. So I went to a walk-in clinic in the heart of Capitol Hill and let a young internist take a look.

“It’s just a boil,” he said after a cursory inspection. “Nothing to worry about.”

Nothing to worry about was exactly what I wanted to hear, but the next two weeks were less soothing. My neck began to feel intermittently stiff and painful and I developed what felt like a … vibration in my head. On the afternoon before I was supposed to take a trip to Europe, there was a stabbing sensation around my teeth and discomfort sharp enough to call a headache. My mother-in-law arrived that evening, to help with the kids while I was gone. While she and my wife went out to eat, I put my daughters to bed and made dinner for myself. It was my last ordinary meal.

By the time my wife and her mother got home, my whole body had gone haywire somehow, as though someone had twisted dials randomly in all my systems. I had pain all over my chest and bowels, a gagging feeling in my throat, a vibratory sensation everywhere. I searched online for “heart attack” and “stroke” and “panic attack,” but nothing seemed to fit. I tried to sleep, but I felt like a tuning fork on the mattress. Finally at 5 a.m. I went to the emergency room.

While I was there the wave receded. The blood tests came back normal, the doctors murmured about stress, and around noontime I went home again, canceling my trip but hoping that it was just a mysterious episode that would quickly pass.

The next day I felt the way you feel in the last days of a lingering fever — dizzy and disoriented, my body slightly disassociated from itself. Except this feeling persisted no matter what I did. The pain that had started in my neck was jumping around — now stabbing sensations in my spine, now prickling and tingling in my extremities. And beneath it was a feeling of invasion, of something inside my veins and muscles that wasn’t supposed to be there.

So I began going to doctors and taking tests. I had my stool and urine tested repeatedly. I underwent cranial and abdominal scans and a tilt table test. The only irregular result came from a neurologist, who told me I had some sort of peripheral neuropathy and recommended exercise and more hydration. (Maybe drink more Gatorade — for the electrolytes.)

The other doctors prescribed sleeping pills, mild antidepressants and Xanax. Stress, they said. Too much going on in your life.

I did feel stressed now, but the illness felt like the reason rather than the symptom, and my mind was the only part of me that worked. I could still write columns, normally enough that I didn’t have to tell my editors how awful I was feeling. (That was the summer when Donald Trump descended the Trump Tower escalator and politics became a fever dream as well.) And I could analyze my symptoms with what seemed like my old familiar reasoning powers, even if my self-diagnosis kept shifting based on which online source I read.

Around this time, New York magazine published an interview with a physician who had lived with undiagnosed Lyme disease for years, eventually acquiring a heart condition that required a transplant. The article came with an illustration of a man’s body spider-webbed with filaments, like something out of H.P. Lovecraft.

His symptomology resembled mine; the “boil” could have been a tick bite. My Lyme test had been reported as a negative, like the other blood tests, but I obtained a copy and saw that one of the “bands” that appear in the presence of Lyme antibodies had appeared in my test. You need five bands to appear, according to recommendations from the Centers for Disease Control and Prevention, for an official diagnosis. But with exaggerated reasonability, I persuaded the primary care physician I’d been assigned after my E.R. visit to prescribe me the antibiotic doxycycline.

She gave me 10 days’ worth — easily enough, she said, to clear up a Lyme infection. I took it. A few days into the course I began to feel incredibly strong waves of pain, stronger than before, concentrated especially in my joints, my knees and elbows.

Reading online, I encountered descriptions of the Jarisch-Herxheimer reaction, flares of symptoms that may accompany the large-scale death of bacteria inside the body. Named for two European doctors who identified it in patients treated for syphilis, it was supposed to be common in Lyme patients. So I took the surge of symptoms as a possible confirmation of my guessed-at diagnosis.

Around this time we drove from Washington to Pittsburgh to visit my wife’s sister. Halfway there, somewhere in the Appalachians, I began getting crushing pain across my chest, running up through my left shoulder. At a certain point the blaze was unbearable, and there was nothing to do but tell my wife — quietly, so that the kids couldn’t hear us — that I was having really bad chest pain, and she had to take the wheel. Which she did, maintaining a maternal calm that was more terrifying than panic, and when we reached Pittsburgh she dropped me at an emergency room while she rushed to settle the girls at our hotel.

There was nothing wrong with my heart, the doctors said, no problems they could see. They pushed liquids through my system, rolled me under sensors, talked sympathetically to me and skeptically to one another. I lay wrecked in the E.R. bed. Surely this was the low point, I thought; surely now recovery would begin.

I was wrong. The next day I sweated through a visit to the Pittsburgh Zoo as the chest pain built again, and built, and built, and finally I was back at the E.R. in the evening for the same tests, the same sympathetic but disbelieving attitudes.

When we made it back to Washington I called the primary care doctor, and she dismissed the idea that Lyme and doxycycline together could cause phantom heart attacks. (“The Herxheimer … ?” I said. “That shouldn’t last more than a day,” she said authoritatively.)

So I discarded the Lyme theory and went to another round of doctors — a cardiac specialist, a gastroenterologist. All their tests were negative; each visit ended with the same gentle suggestion that I consider psychological explanations.

Now the chest pain was with me every night and day. Sometimes it came over me when I was watching our little girls, making me terrified that they might watch their father collapse in front of them. At night I sat up with it, trying to decide whether I needed to rush to the E.R. again.

But I was also deep into self-doubt about the reality of my experience. The pain was crushing, but what were mere feelings set against the certainties of so many doctors, the negative readings of my blood?

The tipping point was my session with the head of infectious diseases at a major hospital, an appointment that took six weeks to get and that lasted all of 15 minutes. He listened to an abbreviated version of my story, sighed and leaned backward in his chair.

“Look, we’ve done everything for you,” he said. “If you had an infection, we’d catch it.”

“So what does that mean?” I said weakly. “I’m just in so much pain, Doctor. Can it really all be … stress?”

He spread his hands. “There’s just a lot we don’t understand about the human body,” he said. “A lot of mystery, you know? But you’re young and healthy, you’ll feel better. The important thing is that we can rule things out — that’s what we do here.”

Then, into the awkward silence: “And if you need a mental-health referral, we can definitely help with that.”

So I went at last to a psychiatrist, my 11th doctor in 10 weeks. He let me pour out my story, and then told me that the physical symptoms I was experiencing had to have a physiological root, beyond stress or mental illness.

But now I was committing to the anxiety diagnosis. I scoured books about anxiety, looking for stories about nervous disorders that affected the nerves in a painful, fiery way. I emailed an old colleague who had written a book on his own anxiety disorder. I acquired a set of exercises called “the healing power of breath,” and at night, while my wife tried to sleep beside me, I did its exercises with quiet desperation. And when the waves of pain came over me I told myself that I was being stabbed by a dagger of the mind.

My memories of that August are scant. I was sleeping an hour a night at most: I would drift off and suddenly be pulled awake, usually by a feeling like an alarm clock going off in my chest, or sometimes by the feeling that my throat was closing up.

I said goodbye to almost none of our Washington friends. With my stomach, throat and bowels all afire, I had lost 40 pounds in 10 weeks. In one of the few pictures from our last days in the city, I look skeletal and permeable, like a haunted-house ghost accidentally captured by a tourist’s camera.

Somehow we made the long drive to Connecticut and began the process of moving into our new house. I told myself that maybe the anxiety would pass once the move was accomplished, but in the house I was barely functional, crying easily, struggling to open windows and assemble cribs.

I had an appointment with a Connecticut psychiatrist. She listened, took notes and said, “I’m quite sure you have a tick-borne illness, Ross.”

The next day I saw a family doctor whose practice had been recommended to us. “A lot of possibilities here,” he said as I hunched with squeezing pain across my shoulders, “but Lyme is definitely one of them. The blood tests are really unreliable. I think you should try antibiotics again.”

At this point in my confusion it felt as though the earlier antibiotics had definitively caused the phantom heart attacks, that taking doxycycline without a positive Lyme test had rolled me farther down the spiral staircase. So although I dutifully acquired the bottle of pills, they sat on my bedside table for a week before I found the courage to take them.

When I did, the pain in my joints immediately got worse again. I stalked our unfurnished new house late at night; I woke up in the mornings feeling like I had been beaten by a boxer overnight.

But I woke up, from a sleep that was four or five hours instead of the hour that I had been getting since July. The throat-closing feeling vanished, the phantom heart attacks ceased. And the feeling of perpetual dizziness, of half my body being disconnected from the other, was gone after a week on the antibiotics.

So they seemed to stabilize me — something confirmed whenever I went off them and the disintegrating feelings swiftly returned. But they did not heal me: Instead, over weeks, then months, and then longer still, they kept me in an awful, painful stasis.

Instead of feeling like I was falling apart, I felt like my body was a cage of pain in which my self was somehow prisoned. And instead of being simply ill, I became what I would remain for years: a chronic-illness case.

This essay is adapted from the forthcoming book “The Deep Places: A Memoir of Illness and Discovery.”

My Comments:

If only: no other human could empathize or identify with the words Ross Douthat has shared or the realization of becoming a sick person.

If only: no living, breathing being has/will ever experience illness or pain or suffering or loss… in this lifetime.

If only.

Ross’s story is too familiar. To too many people. Myself included*. Wish it were possible to annihilate illness/disease from existence. Unfortunately, as we all are more than aware of, disease happens. Millions of people have been and will continue to be directly affected. Every single day.

Of course, there are unlimited preventatives we humans should incorporate into daily life to try to achieve/maintain the best health possible. Making ourselves aware of the signs and symptoms of disease, as well as educating those around us, is undeniably important. This goes for Lyme + vector-borne diseases, cancer, diabetes, heart disease, Alzheimer’s, mold illness… and yes, viruses like seasonal flu and Covid. The list of illnesses to guard against is infinite. Knowing early warning signs, preventative practices and therapies, early treatments, and doing all within our power to live a healthy lifestyle — collectively invaluable in humankind’s never-ending quest for overall wellness.

When it comes to your health, question everything. Question your doctors. Question lab results. Question what health experts say. Question what you hear in the news. Research for yourself… for knowledge is indeed power. Power and investment in you… and your family.

Questioning the “trust me” and “believe me” from those who should know better… could possibly be the difference between living life fully — in a body that is strong and healthy, versus constantly fighting disease and/or living with pain and suffering. Be your own advocate. No one knows your body and how you feel better than you. Fight for yourself. Fight for your right to make decisions about your own body and overall health. No matter the what, the when, or the why. Period. And… trust your gut!

Please know, lovelies, none of what is being shared in this post should be interpreted as ‘live life in fear,’ or that this life is nothing but a disease-filled downer. On the contrary. This life is a precious gift! Live each and every day to the fullest. Whatever that may be for you. And while living life and being and doing you… take your health seriously.

As with all of my reflections, thoughts and opinions expressed (by me) are based upon personal experiences and observations. Definitely prefer to keep things on the lighter side, with humor and sarcasm added to the mix. Sometimes, somedays, the not-so-fun pieces-parts happen to be where life has us… has me. And that’s ok!

Plus, Lyme disease — insert any disease or cause — awareness never takes a holiday!

Hope you will check out Ross Douthat’s book, “The Deep Places: A Memoir of Illness and Discovery.” I for one am eager to learn of where his Lyme disease + healing journey has taken him. (And no, I am not affiliated in any way with this book or the author. Simply a fan of Ross’s writing, and quite happy to support a fellow Lyme/illness fighter!)

To anyone living with Lyme and/or chronic, complex illness(es): please join me in holding on to hope for an abundance of stronger, healthier, living-life-to-the-fullest days… and years… to come. No matter life’s challenges, may we all keep moving forward. One tiny step… one breath… at a time.


Until my next Reflection…

Blessings, love and light — always!

—Terry xx

* To learn more about my 44-year illness journey — my version of ‘How I Became a Sick Person’ — read: A Colorful Journey Through Lyme Disease and Chronic Illness — A Lyme Disease Awareness Story.

Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm

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