On Hope and Chronic Illness
The following is the text version of my video essay.
Chronic illness became real to me at my surprise 14th birthday party. I was stretched out on the living room sofa where I’d been confined by crushing exhaustion the last few months. I might’ve been reading the new Harry Potter book. Then, a knock at the front door. My mom answered. A dozen neighborhood kids filed into the room, greeting me with cheery “Happy birthday!”s. A semicircle of smiling faces formed around the sofa and looked at me expectantly. But I wasn’t glad to see them. I didn’t want to be turning 14. Birthdays mark time in a deeply meaningful way at that age. This was my first while homebound by illness. I wanted to pretend time wasn’t passing—not celebrate it.
I knew so little at the time, but already, I clung desperately to hope. And who wouldn’t? I needed the crevasse forming between myself and my peers to stop widening. Who was I without them to shape me? No one. And so the stakes felt existential.
Hope took such different forms for me then. I hoped to recover in time for the start of high school. To not miss basketball tryouts. But months passed with no improvement or diagnosis. Then years. My hope, my life, became oriented around one all-consuming question: what was wrong with me?
1. Diagnosis
One of the periods of my illness I found the most difficult to survive was when I was the least ill.
Now I was a year older—15. Whatever was wrong with me was apparently a very rare illness. How many harshly lit exam rooms had I entered by then? How many times had I dangled my legs off the end of an exam table and had a reflex hammer strike my knee? How many times had I left those exam rooms hating my life more than when I entered? I’ve never understood the doctors who, as they washed their hands of me and implied I had a mental health issue, did so with an air of amusement.
Being a minor, my medical care was directed by my mom. She believed in me and my illness. When conventional medicine had thoroughly failed me, she looked for help in the alternative.
Without exception, these alternative practitioners believed they understood my illness and how to heal it. The first one was an older man with a ponytail and walrus mustache. His voice sounded exactly like you’d expect from someone with a walrus mustache.
He began by pricking my finger to draw blood. Then he had me press it to a microscope slide—an object I’d become familiar with not long before in 8th grade science class. His microscope also looked like it was from my 8th grade science class except his had a digital viewscreen. He pointed to it as he talked about the evidence of illness he saw in my blood. I was nonplussed. Even at this age, a part of me knew this was too good to be true.
Now that he’d diagnosed the issue, he wanted to treat me. I remember the unfortunate smell and taste of the ozone he had me breathe. The panic I felt as he stuck a syringe deep into my mouth to inject my tonsils. The way my sweaty shirt stuck to my body afterwards. I don’t remember how we moved on from him, but that was typical—a few appointments without me feeling any better and one practitioner replaced another. What changed was how many hours the drive was.
The Lyme-literate MD was different. He was a real doctor, for one, which meant something to me. And he diagnosed me with Lyme based on a scientific blood test. Indisputable evidence of my illness—or so he led me to believe. I was a textbook case, he said. But I wasn’t responding to treatment like one. We were patient, though: the blood test proved we were on target. I was finally getting prescription medications—stuff befitting the seriousness of my illness. I had a PICC line installed to go on IV antibiotics. I made a picture of it my Facebook profile photo as if to say to my peers “This is where I’ve been.”
There was about three years time between my first and last dose of Lyme antibiotics. If you know antibiotics, you know being on them this long is bad. Antibiotics are harsh on the body—especially the gut. I’ve always suspected they caused the Crohn’s colitis I was diagnosed with not long after. That disease comes with an increased lifetime risk of certain cancers.
The last thing this doctor said to me was perhaps the most damaging he could’ve: that Western medicine could do nothing for people like me. There it was: I was doomed to this wretched life. To utter loneliness. To never knowing what was wrong.
What he did was kill the last of my hope. This wasn’t the end of my journey through alternative medicine—I had a year of worse things to come. But it was the end of my desire to live. I was 19 and planning my suicide when I was finally diagnosed with ME/CFS.
2. Privilege
So the six years I was ill without my correct diagnosis were very difficult. It turns out that it taking six years makes me one of the luckier people with ME/CFS in the world.
There are only a few countries on Earth where the average time to diagnosis is less than 6 years. And this is among survey respondents—people privileged enough to get diagnosed at all. The true average time to diagnosis is longer.
Here’s a little chart I made which compares the number of people with ME/CFS in the most populous countries.
The average person with ME/CFS lives outside the Western world in a country where the disease is unrecognized. Where diagnosis is virtually impossible. Where there’s no end to being blamed for not responding to treatment. The torture I lived through because I didn’t have the right diagnosis could’ve continued indefinitely. For most people with ME/CFS, it does.
And while ME/CFS as a diagnosis has only been around several decades, the disease has always existed. It’s only in recent times that the illness has been, for a lucky minority, anything but proof of an inherent weakness of mind and character.
3. Acceptance
I was 18 when I started asserting myself. I suppose it was inevitable that years of being failed by alternative medicine would lead me to scientific skepticism.
I’d grown increasingly at odds with the direction of my medical care. My first action was to advocate for a trip to the Mayo Clinic, an American hospital several states away renowned for diagnosing rare diseases. My mom agreed on the condition that I first spend two weeks at an alt med clinic of her choosing. It turned into a month-long nightmare. The daily injections which left me shaking violently with a high fever—that meant they were helpfully stimulating my immune system, supposedly. The 6 hour days in a pitch-black room absorbing IV cocktails with the other victims. The disembodied voice from the adjacent hospital bed asking if she could pray for me. Waking up in the night feeling like I couldn’t breathe. The drop of blood under a microscope thing, again. Healing with magnets. The head of the clinic angrily informing me that homeopathy is scientific. I wasn’t hiding the fact that I hated being there. My mom entreated me to stay just a couple more weeks—and what choice did I have? I left more determined than ever to kill myself. I’d do it if the Mayo Clinic couldn’t help me.
I’m alive today because the Mayo Clinic diagnosed me with ME/CFS. I was so tortured that my main feeling at being diagnosed with an untreatable chronic illness was relief.
Some people dispute the usefulness of an ME/CFS diagnosis—“there’s no treatment, so what’s the point?” My diagnosis allowed me to begin the critical work of accepting that I was chronically ill. It described my symptoms perfectly and was proof I wasn’t delusional or alone.
For the first time since falling ill, I asked myself: could life like this be worth living? I didn’t know but decided to give it a shot. The question that guided my days was “what could I do right now that’d bring me pleasure?” I started meditating which grounded me in my mind and body. I took up classical guitar which gave me something to work at. I dipped my toes into online ME/CFS communities and socialized with people who understood me for the first time since falling ill. I developed hobbies and friendships. I let go of my demands to the universe for a return to health and ability. My need for hope became much less urgent. My life was hard but sustainable.
The particulars might vary, but the general arc of my chronic illness acceptance narrative is fairly common. Some of it might be relatable to you. But I want to mention the things I left unsaid. Accepting my chronic illness didn’t mean accepting a lack of housing. It didn’t mean accepting being stuck relying on my abuser to survive. It didn’t mean accepting an unbearable quality of life. Acceptance isn’t something equally accessible to all. It is enabled by privilege. We who need less hope to survive the day are fortunate.
4. Severity
Misplaced hope is a dangerous thing. My mom’s led me through alt med hell. Mine led me to take an experimental treatment which left me bedbound and very severely ill for six months.
First, my worsening health made me say goodbye to playing guitar. Then to my online friends. Then to food that required chewing—I was that weak. My symptom burden had become a constant roar oppressing me every waking moment. Yet, here at my sickest, the medical neglect worsened. Doctors simply couldn’t be persuaded that I, with so-called chronic fatigue syndrome, required care in the home. And so I had no medical care at all. I felt as if I had stepped into some deep hole in the street. A small circle of light overhead and the sounds of people going about their lives as usual were my only remaining connection to the world. I was mere yards from a busy road outside my bedroom window yet felt so far from humanity. I was tormented by the thought that all my future held was for my health to continue deteriorating until I simply couldn’t bear living anymore and was forced to kill myself.
Acceptance, which had once saved me, was no longer possible. I was suffering too much. I needed hope—meaning a scientific breakthrough, treatment. Following ME/CFS research news the previous five years had made me cynical about how long this would take. I’d probably said in some long-buried chat message that it could take decades. That was well and good when I didn’t need hope as a matter of survival. Now, I did, and so I became an optimist. Hope was fragile and essential. I avoided online discussion which suggested treatment would take longer than a few years. I didn’t see myself being able to hold on that long.
To say I’m extremely fortunate that my time being so severely ill lasted only 6 months would be an understatement. I was aware of more cases of people staying that way indefinitely than improving. I was sure then that the misery would only grow until it ended me.
The life I’ve lived since then as an only mostly-bedbound person has felt like a gift—as though through some cosmic glitch, I was awarded extra time here. Like I’ve reached life’s bonus level. The experience deepened my understanding of acceptance as a privilege and of the life-saving potential of hope.
5. Danger
I had no idea that the world of illness was so full of predators. They’d dispute that label, but they harm desperate people by offering false hope. I don’t care whether the alternative practitioner who had a child stick useless medicine up his butt had pure intentions. Nor the neurologist who prescribed me graded exercise therapy. The harm could’ve been avoided had they been scientific skeptics. Had they the principles to intelligently question conventional wisdom in their fields.
Both can cause great harm to chronically ill people, but I do see important distinctions between scientific and alternative medicine. The former is committed to testing its ideas against reality eventually. To following the best evidence wherever it leads—in theory. That makes it salvageable. The latter has no such commitments. It’s allergic to testing its ideas and accepting inconvenient evidence. It clings to beliefs disproven centuries ago. It’s stagnant by nature.
Scientific skepticism is chronic illness self defense. Entering the world of the sick puts a target on our backs. It costs nothing for incompetent or malicious practitioners to offer what some of us need most: hope. They have an infinite supply of it to sell, and our money spends just fine. Scientific medicine can be similarly dangerous. Doctors are usually ignorant, often prejudiced, and sometimes abusive. Treatments that cause harm can be endorsed by the highest medical authorities. The safest path to getting help is rarely clear.
Few of us have the expertise to critically read research. But we can listen to those among us who do. We can learn about the limitations of treatment anecdotes. About the cheapness of unproven mechanistic hypotheses—they’re not worth much. All this serves to teach us where not to place our hope.
6. Hope
Hope can put us through hell. It can make life worth living. We need it more sometimes than others, but it’s always at our side. The temptation to let it lead us where it may can be overpowering. It thinks it’s found a light at the end of the tunnel and drags us onward. It’s crucial in these moments we plant our feet and think as scientific skeptics do. That our next steps are guided by critical and not wishful thinking. That’s how we safely coexist with hope—our chronic illness companion.
I’m privileged to have a bearable quality of life currently. All my basic needs are met. So my hope can be for a fuller ill life—for more autonomy, love, and meaning. I don’t need my illness to improve to survive. But this can change. Some day, I may find myself fighting to survive again. And hope might not be enough. But it will be there beside me, doing its best to keep me alive.