Welcome to “How to Go to the Doctor,” our twice-monthly advice column started by Eva Hagberg Fisher, and inherited by Jackie Shea: actress, wellness advocate, and writer of the blog, Too Sick and Naked, the “hilarious” stories out of her chronically ill and traumatic life dealing with Lyme disease, immune disorders, and PTSD.
“Would Loder diagnose a condition that had never been suspected? Would she suggest a treatment I’d never heard of? Would she have some microvascular procedure that she could perform that others couldn’t? The answer was no…There is rarely a single, immediate remedy…whether it was a drug or a change in diet or an exercise regimen…Things would take awhile—months, sometimes longer. Success would be incremental.” – Atul Gawande, “The Heroism of Incremental Care,” January 23, 2017, The New Yorker.
I was pre-adolescent, skinny and anxious, pacing around my dusty living room restlessly waiting for my best friend to arrive. My mother, annoyed by my stomping and huffing darted her eyes at me and said, “Alright Jackie! Relax! They’ll get here, haven’t you ever heard the saying ‘a watched pot never boils?’” I stared at my mother in disbelief. No. I had not heard that saying. But on impact, I loathed its meaning. I was born impatient and then raised in NYC—the most fertile soil for impatience to grow unyielding and unmanageable. I heard it all: “Life is a journey, not a destination,” “Patience is a virtue,” “Good things come to those who wait.” But I didn’t care to be much of a “waiter.” I wore my impatience with pride, finding it synonymous with “fun.” And then one day, in a shocking plot twist, it all got very serious. Quite literally, if I wasn’t going to find some deeply rooted untouched reservoir of patience within myself then I was never going to recover from grave and life-threatening illness.
You know what’s mighty convenient, fast-acting, and perfect for people with patience issues? Antibiotics. I was naively excited when I was given the Lyme disease diagnosis in December of 2013. For two weeks, I had been experiencing unsightly rashes on my body and the only hypotheses I had after far too much Googling was that they were the result of bed bugs or psoriasis—both of which seemed like real pain- in- the-ass situations. But I’d heard that Lyme disease—especially when caught early on—is effectively treated with antibiotics.
I searched for a doctor familiar with Lyme, but had a hard time getting a hold of one. Doctors weren’t picking up; the lines were busy or disconnected; I was being turned away as a new patient; offices didn’t have availability for at least six weeks. This is where my impatience works as an asset. I wasn’t going to wait six weeks—I needed treatment STAT. Impatience works as an asset to a certain point—it has served me in many ways. But learning when and how to step back, breathe and slow down was also indispensable for my particular journey. After a couple of failed phone calls, my neck was growing tighter, my insides shakier and I was falling apart before the real war was even being fought. If I was going to lose it in pre-battle because phone-call-making wasn’t going my way then I was in trouble. I calmed down once I found a doctor. She told me I needed two months of three different antibiotics and that my chances for a full recovery were good. That was all I cared about. “I will be one of the people that completely recovers from this disease, right? I am one of the lucky ones?” I was not met with an acceptable answer (i.e: “oh absolutely, you’re in great shape”), but the doctor seemed moderately hopeful with my case. So, without doing research or changing anything else about my life, I started swallowing large quantities of gut-destroying antibiotics.
I took antibiotics for the next ten months. Yes, ten. They continued to fail and I continued to take more of these “fast-acting” magic pills at higher doses. My doctor was equally impatient. She had no knowledge of my history, barely ran any blood work, and gave me only fifteen minutes of her time to discuss new treatment options. Lyme doctors are inundated with patients. They are very often in a mad rush to give you a treatment plan and move on. The doctor with the most success treating Lyme patients has become famous, I believe, due to his relentless investigation of each individual’s issues. He costs 1,600 dollars for the first appointment and has a three-year long waiting list. Since most of us can’t see him, it is often up to us—the patients—to do our own research and be our own “slow and steady” advocates.
That was something that I was unwilling to do. To be entirely transparent, I was actually seeing an ND who was offering me a holistic approach—an approach that I would occasionally and timidly dip my toe into, test the temperature, and almost immediately retract screaming: “No way, I’m not jumping in that pool! The water will take too long to get used to.” Almost always, when we are chronically affected with some elusive complicated illness, it is not the result of one simple thing. Usually, things have been stirring for a long time, maybe all of our lives. For me, it started young. I had many minor health issues that were ignored before I got bit by the tick—the head honcho, the thing that fully took me out. But with a lifetime of other, smaller issues that had to be revealed and treated, why did I think I would get well overnight? I read about these other issues and turned a blind eye, I saw many articles and books about the suggested diet changes and thought, “well, I won’t have to do that because I’m beating it with antibiotics.” All of my short-cuts took me farther and farther away from my desired destination.
It all started: the sleep loss, the physical pain, the weight loss, the hair loss, the unbearable fatigue, muscle twitching, and heart palpitations. I was manic seeking a solution. Would acupuncture be the solution, Buhner herbs, the Cowden protocol, essential oils, curcumin, diet changes, yoga, and the list went on. With each new thing I did, I had a new revived and unrealistic hope that the thing would fix me. But I never gave anything room to do its job. I couldn’t tolerate waiting to see how any one herb affected me so I piled a new herb on top of it. I couldn’t tolerate pain so I overdid the treatments. I was spread too thin and I was constantly obsessing about how to get better—ironically, making myself much sicker. Impatience is a stress response. Stress negatively affects the body. Stress directly affects the immune system, which is the number one component in combating Lyme (or anything else for that matter). The more I worried, the sicker I got. The more I wanted to get well RIGHT NOW, the more I prolonged the process.
Once I was fully pushed up against a wall and had no “quick-fix” options at my disposal, something beautiful happened: I completely lost my mind, ultimately leading me to a (almost) total surrender. A surrender to patience, to one day at a time, to life, a surrender to “the journey” rather than the “destination.” I took one step at a time, slowly and steadily changing aspects of myself and my life, from the inside, out. I trusted the process. I allowed the experience of illness and trusted that this life-altering experience would be for the good. I took my eye off the pot, I stopped waiting for it to boil. And suddenly, boiling it was.
“Chronic illness has become commonplace, and we have been poorly prepared to deal with it. Much of what ails us requires a more patient kind of skill.” – Gawande, “The Heroism of Incremental Care.”
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