Sixteen Years: A Diagnosis Story

A vulnerable telling of my journey towards chronic illness validation.

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Openly discussing chronic illness is relatively new to me. I’ve been ill for a good majority of my life, but have generally kept it to myself for a lot of reasons. Survival, the fear that I was making it up in my head, and waiting to receive validation or confirmation that I am, in fact, sick have all been causes for not openly sharing. My diagnosis coincided with the onset of the pandemic which, looking back, was brutal. Much like everyone else, there were too many things to process during that time and this added another traumatic layer. I’ve always been a writer but, in my hibernation, I returned to it in a way I haven’t since childhood. I started writing about vulnerable topics outside of my diary and exploring creative writing including poetry, short stories, and personal essays. I wrote “Sixteen Years” around a year ago. It was initially an attempt to connect with community (I submitted it to a chronic illness and disability-focused zine and it was rejected), but, ultimately, it was a cathartic telling of what was buried in my chest and hadn’t been spoken. It only grazes the surface of the challenges I’ve faced, but the chronological telling serves as a way to summarize and release.

In a lot of ways, I’m in a much different headspace than I was when I wrote this, but the story resides in truth and I don’t believe it will age or become irrelevant. I have yet to find community around being sick and, rather than seeking it out, I’m posting this as my offering. Chronically ill and disabled folks shouldn’t be made to feel like they need to live in the shadows. Hopefully this acts as inspiration to be visible (if that’s what feels needed), a form of education for those unfamiliar with the trials of being ill and seeking a diagnosis, or simply as something to relate to on any type of level.

SIXTEEN YEARS

It took sixteen years to get diagnosed. Not sixteen years of apathetic contemplation and doing nothing, but sixteen years of actively advocating, searching, and stating my case to any healthcare practitioner who would listen. Countless doctors and specialists spanning three provinces. Nutritionists, naturopaths, counsellors, acupuncturists – the list is long. I spent my student loans downing every kind of remedy while fading in and out of isolation, being mocked for unexplained exhaustion and alienated for never feeling well. Ambiguity ensured my reality was only for me to entertain and no one else. But, even then, the self-doubt that sets in while being endlessly gaslit and assigned erroneous labels in an effort to dismiss my presence made me question if it was all psychosomatic. A thing of my imagination. Doctors always want to be done with the appointment once they decide that there’s nothing worth addressing. Maybe they were right.

I did this dance for sixteen years. The ebb and flow of being certain, knowing at the core of me that something was very wrong. I needed help, but first I needed to find the answer. New and sometimes debilitating symptoms would show up and I would have no one to turn to. If it got bad enough, I would head desperately to the nearest clinic, only to be told, “Your bloodwork’s fine. You’re healthy.” Followed by, “How much are you exercising?”

I spent a lot of time sitting in my one bedroom apartment feeling like it was my refuge, but being both terrified and relieved that I could stay in bed as long as I needed away from the eyes or judgements of anyone else. I spent days, weekends, and evenings blacked out from the fatigue and nausea of trying to live a “normal” life. Without a diagnosis or any semblance of concern outside of myself, I had no justification for easing up on commitments and productivity. And when I couldn’t keep up, I was blamed for my inconsistency.

Coping mechanisms developed that equate to somehow energetically holding my breath, stuffing down the aches, pains, dizziness, weak and heavy limbs, stuffing it down so deep and holding it there until it could be released the moment I unlocked my door and returned home after a long day. I learned to compartmentalize and dissociate on every level, put pain in a box, fatigue in another, all while suppressed and unexplained anger, irritability, and mood swings tried to breach the surface.

Speckled throughout the demands of daily survival were:

too many nervous breakdowns

in hospital bathrooms

after thirty second appointments

that I waited a year for.

Each time swearing to myself that I wouldn’t get my hopes up but inevitably believing, “This will be it. This will be when they figure out what’s wrong with me.” I was always mistaken. Instead, I was met with the ever-reassuring, “Whatever it is, it won’t kill you.”

I’ve seen a lot of blank stares and puzzled expressions. Practitioners of all kinds looking at me noticeably concerned, but not knowing what to do. In most cases, their main solution was to find something they could place the blame on me for. Whether it was diet, mishandling stress or being over-fixated on my body. There was always a tone of either, “You’re thinking too much into this,” or “You need to try harder.”

Eventually, I resigned myself to knowing that I was chronically ill, without a label, but with a built-in horror and awareness that, whatever it was, it was eating away at me and progressing at a rate that I could feel and notice in my ability to think, move, and exist. I knew I was getting worse, and, to me, it was tangible. Why couldn’t anyone else see it?

The turning point was the arrival of an ayahuasca ceremony I synergistically ended up attending (isn’t that always the case?). It was post-break-up, post-quitting a job that demanded unpaid overtime hours, post-living in a string of homes with infestations, no heat, and noise problems owned by deadbeat landlords with illegal suites. I was done. It was rock bottom. I was falling apart and had nothing except for my learned compulsion for hard work and survival, but even that was becoming less attainable. I couldn’t do it anymore. My body was giving out.

I lay on the forest floor with a couple of blankets and a cheap, padded mat between myself and the dirt feeling the effects of the medicine. I went there with no intention except to experience whatever came, and at some point during that night, I became acutely aware that my body wasn’t just “fatigued” but it was tingling all over, from head to toe, and it had been that way for years. In the days following, I made the connection that my symptoms were neurological and *ding*, like a lightbulb in my head, it dawned on me that I had Multiple Sclerosis.

I timidly and emotionally brought this newfound revelation to my family doctor (without mentioning the ayahuasca), and, of course, his response was to send me to another specialist. A few weeks later, I marched up to the hospital with the same familiar feelings, this time amplified, this time certain that I had figured it out, cracked the code, and that I would finally be acknowledged and taken seriously. The nightmare was over.

Within five minutes, the specialist proudly smirked and said, “I’ll be honest with you. It sounds like, if anything, you might have Chronic Fatigue Syndrome.” Then he compassionately but dismissively offered, “I can help you learn how to exercise.”

“But what about the possibility of Multiple Sclerosis?” I asked.

He laughed and scoffed at the same time. “That’s impossible. Multiple Sclerosis is where half of your body gets paralyzed.” He went on to condescendingly question, “What else did you read online?”

Tears started spraying out the corners of my eyes like a cartoon character. I was at my wit’s end. This was supposed to be my saving grace. The completion of the battle for validation and the fight to be seen. I left entirely defeated and deflated, with a total loss of faith in ever getting help. “This is just the way my body is. I’ll have to get by, somehow.” Knowing in my heart that my ability to work and support myself was dwindling and that a questionable future lay ahead.

My last ditch effort was to request an MRI directly from my family doctor, and, fortunately, he had enough compassion to comply. It came back stating that I had results typical of M.S. “Numerous lesions in multiple areas of the brain.” What it didn’t say was that they accumulated over sixteen years of desperately seeking care. Lesions that maybe could have been prevented. Lesions that steadily grew over the course of time. Lesions that were forming as I was pleading for help and more insight. Lesions lesions lesions. The casual brain damage of neurological disease. The thing we never talk about. I try not to think about it but my anger runs deep. I have to chip away at my resentment towards the discrimination and inadequacies of the medical system daily.

It’s been a year and a half since I received the initial MRI results and a year since receiving a formal diagnosis, and I have yet to receive treatment. I’ve been sent on a spree of trying to get appointments with neurologists, often coming up short, or, if I manage to get in, they don’t follow-up. I had to prove my diagnosis twice, not because it’s unlikely I have Multiple Sclerosis, but because government insurance companies have to be appeased and convinced before they’re willing to cover the high price of disease modifying therapies.

In a sense, nothing has changed. I am still living a life of wondering when I’ll wake up knowing that there are answers and help is on the way. Except now I have the gravity of a label that I’m not so keen to hold, but, conversely, it’s like an old friend that’s always been there. “Multiple Sclerosis.” I roll it off my tongue considering how it relates to me, if I am it, if it is me. If it’s possible to be free of it, if it’ll consume me. Most days, the diagnosis feels like a dream.