Reflections on Chronic Illness and Misdiagnosis

In the late ’90s, the deputy headmistress at my Croydon secondary school was a robust woman with a military-style haircut, always seen in unflattering brown outfits. The students often criticized her, particularly her voice, which was harsh and grating. Even now, decades later, I can vividly recall the phrase “mystery illness” from a letter she sent to my parents regarding my absence from school. It’s strange, really; she never said those words directly, yet they’ve stuck with me.

I was just 11 when I fell ill with what seemed like a typical virus but then spiraled into something more complex. I felt a mix of symptoms: fatigue, headaches, sore throat, and a condition called postural orthostatic tachycardia syndrome, which made me feel faint when standing or sitting. Listing these issues makes them sound manageable, but it was anything but that. Being unwell felt like being trapped in a thick fog; at times, my mind and body felt disconnected. Reading became impossible, and the simplest tasks felt monumental.

As a timid child, articulating these struggles was tough. The most visible issue was the headache, so that was the focus of the doctors. They tossed around terms like “benign intracranial hypertension,” which I found unconvincing. Regardless, it was clear the headmistress’s letter suggested I should shake off this “nonsense” and get back on track academically.

I can’t help but think of the headmistress as a sort of villain in my story, a Miss Trunchbull against my Matilda-like struggle. But perhaps she was right to call it a mystery illness. Chronic illnesses can feel baffling and frustrating, even after diagnosis. I’ve spent countless hours pondering what I can control versus what’s beyond my influence. Is it naïve to hope for full recovery, or foolish to think I can’t?

For years, I saw various doctors, and while none explicitly said “it’s all in your head,” the underlying message was often the same: nothing was wrong with me physically. The bias in the medical community against women’s health issues—sometimes referred to as “medical misogyny”—is finally gaining acknowledgment, but many still overlook these systemic issues. Like many women facing chronic illnesses, I endured this frustrating cycle of being dismissed.

Typically, when I visited a doctor, I’d have my tests evaluated, only to be told everything looked normal. This left me feeling unheard and frustrated. One doctor even suggested I eat more vegetables, which prompted an eye-roll when I replied that I already did. Anger takes energy, and in those moments, I often felt too drained to push back. The irony is that when you need to advocate for yourself the most, you’re often at your weakest.

Reflecting on those experiences, I now lean more toward understanding the doctors’ perspectives. They were just doing their jobs, though that doesn’t excuse the neglect of their patients’ realities. It might be human nature to focus solely on numbers rather than the sick individuals in front of them, akin to someone following a GPS blindly without considering the world around them.

As I wrestled with self-pity and sought clarity, the nagging thought came: Do these doctors think I’m pretending? If that’s the case, shouldn’t they encourage me to pursue acting instead of wasting my talents in their office? The lack of belief in my experiences often felt more debilitating than the illness itself. A comprehensive diagnosis would have been validating.

In my early 30s, my partner suggested I might have myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome. The name itself feels demeaning, reducing a complex condition to mere fatigue. Yet, beyond exhaustion, it introduces a myriad of symptoms that fluctuate unpredictably. On the worst days, I’ve experienced sensations bordering on torment. Once, during a meditation session meant to relieve pain, I tried to locate a pain-free area in my body, only for an odd heat to suddenly overwhelm my palms. It felt like my own body was resisting my efforts for relief.

Initially, I hesitated to embrace this diagnosis, feeling as though it could be a case of sibling rivalry—my brother had been diagnosed with ME just before my own struggles began. That made me doubt the legitimacy of my experience. It was as though I was still that child looking up to adults for validation, particularly in a medical environment that often dismissed anyone it deemed a hypochondriac.

Eventually, I made an appointment with an ME specialist in New York City. He was a robust Englishman with a confident demeanor, and he confirmed my boyfriend’s diagnosis. I learned that what I thought of as strange sensations were authentic symptoms related to low blood pressure. After 20 years of uncertainty, I finally had a name for my condition—a neuroimmune disease with elusive origins. That diagnosis felt empowering, reminiscent of an agent revealing their badge; it signified I’d been vindicated.

Despite a lack of standard treatments, I realized that my health wasn’t tied to diet alone. I penned an earnest Facebook post about my struggles with ME/CFS, only to delete it later, feeling embarrassed by the self-importance of my disclosure.

The psychological relief from the diagnosis might have aided my overall well-being more than any medication, which didn’t significantly reduce my debilitating episodes. These episodes lasted for weeks to months, but after moving to Colorado, I noticed some improvement attributed to a newfound love—and perhaps the state’s abundant sunshine.

When I felt good, I looked back at past ME/CFS episodes with a detached perspective—not necessarily out of acceptance but maybe denial. It’s similar to how a person forgets the agony of childbirth. When I returned to an active, functioning state, I sometimes caught myself in contradictory thoughts: Did those experiences even happen? Or would they occur again?

In October 2023, a severe relapse struck me, and it felt worse than anything I’d experienced before. While I managed to reflect on my past fitness, the memories felt distant, and even the simplest tasks became monumental challenges. My appetite vanished, so my husband found various drinks to lift my spirits. Some concoctions were surprisingly enjoyable, like a plant-based tonic, but later, tasting it again forced me back into memories of that dark time.

After eight weeks, I seemingly recovered, but in spring 2024, I found myself in a similar cycle of illness again. Feeling desperate, I tried asking my body what it needed. The answer—“Healing touch”—was oddly straightforward, leading me to search for energy healers nearby. The results were plentiful, as one might expect in a place like Boulder.

During a session with the first healer I found, they mentioned I had a “leaky sacrum,” which was amusing but didn’t offer much comfort in my condition. More importantly, she suggested brain retraining. She said it confidently, as if it were the decisive solution to my struggles.

Though skeptical, I decided to give it a shot. The resistant part of me still clung to doubts about the mind’s role in my condition as I approached the process. After all, I had often insisted the issue lay firmly within my physical being rather than my psyche. Yet, I realized, perhaps foolishly, that I had been viewing the mind and body as separate entities.

In the course of brain retraining, I worked with Jason, a wellness coach who seemed effortlessly optimistic, often asking psychological questions that illuminated aspects of my personality I hadn’t fully acknowledged. When he remarked that chronic fatigue never afflicts lazy individuals, I found a kernel of truth to embrace amidst my doubts.

Soon after starting, I invested in my sessions with Jason, albeit with discomfort at the financial commitment. The journey of brain retraining began, focusing on the mind-body connection—a concept that explained both the placebo effect and the potentially misguided perceptions of illness. The theory suggested that ME and long Covid might be a series of misinterpretations from the brain regarding physical threats, inadvertently prolonging the conditions. The idea of “rewiring” the mind felt challenging, especially given my skepticism around the mind’s influence on the body.

As part of the program, I was tasked with watching success stories and creating a vision board of my life post-recovery, which embarrassed me to do. Yet I pushed through, also logging daily accomplishments no matter how small. The brain retraining exercises aimed to activate the body’s “rest and digest” state rather than the heightened “fight or flight,” pushing me to embody recovery even when it felt absurdly optimistic.

Despite my initial resistance to such practices, I dove into the process, wary yet hopeful. I visualized scenarios of running and feeling free, imagining myself celebrating milestones of wellness. On May 13, 2024, I achieved a small goal: I ran a trail and sent Jason a jubilant selfie from the peak. His enthusiastic response felt exhilarating, and I reveled in the euphoric feeling that perhaps I had truly overcome my struggles.

I began to see my prior struggles with ME/CFS as a thing of the past, applying these principles to other life endeavors, which made me feel empowered. My husband, however, started to observe this newfound zeal with caution—wondering if my outlook might veer too far into delusion.

When I reached out to Jason again late last year, I was feeling flat—a sense of loss in my faith rattled me after suffering through another wave of illness. As I reluctantly engaged in the brain retraining regimen again, I noticed the shift away from hope brought a kind of disillusionment. Had I reverted to the familiar cycle? I pondered what had gone wrong.

Jason, with his engineering mindset, explained how brain retraining was akin to rebooting one’s internal operating system. Could my skepticism about this process be rooted in my belief that humans are inherently different from machines? Even acknowledging the value of language, I couldn’t shake the feeling that the individual wellness focus felt troublingly selfish. The narrative around it often seems to imply that mental will can trump systemic healthcare failures—irresponsibly brushing aside the real struggles many face without adequate treatment.

For years, I hesitated to share my experiences with illness, not wanting it to dominate my thoughts or writing. I preferred to explore other interests but felt compelled to grapple with it—as if I had to strike a deal but ultimately it remained unresolved. Even as I continued to reflect on my experience, it didn’t provide the solace I sought.

Though I didn’t achieve the heroic narrative I envisioned, I’m not denouncing the process either. While brain retraining didn’t offer the miracle I hoped for, it has made me reconsider my understanding of healing. Life continues to be random and complex, filled with struggles and resilience. My journey with chronic illness is ongoing, but it doesn’t define me. It’s simply a part of the larger landscape of my experience.