What Living With Chronic Illness Really Feels Like

Living with chronic symptoms is not just a medical issue—it’s an exhausting full-time reality. The symptoms started slowly in my early 20s and grew into a sprawling, unpredictable set of limitations that touched every corner of my life. Most days, I’m not just managing fatigue or brain fog—I’m competing against my own body to function. I often feel like I need to be twice as strong just to live at half normal speed.

The symptoms are relentless and shape everything. My energy is never consistent. Some days, I can only complete a single small task before needing to lie down. Other times, especially in summer, I get bursts of energy—but a crash is always on the horizon, keeping me hyper-vigilant. Mornings are brutal, but not always. It can take hours before I feel fully awake. Being forced to wake up by an alarm before my body is ready is one of the most soul-crushing experiences I endure.

Food and drinks have been 20 years of trial and error to see what affects me and what doesn't. It all becomes complicated. Social events make these restrictions exhausting to maintain, especially when I’m surrounded by offers I can't easily explain away or when I’m tempted to take a break from the discipline. Every gathering becomes a strategic operation—where is it, who will be there, and how will I explain my limitations again without a clear diagnosis?

I have to choose between showing up and crashing later, or staying home and feeling isolated. Either way, there’s a cost. Saying "no" to invitations isn’t about disinterest. It’s about survival, or saving the energy I’ll need just to make it through the workweek. Meanwhile, I experience hypervigilance and hypersensitivity—light, sound, temperature changes, smells, even fabrics. My five senses are heightened and irritable, especially in winter.

Every decision I make—what to eat, when to sleep, whether to push or pull back—carries consequences. Winter makes everything worse. The lack of true sunshine and cold temperatures make it the hardest time of the year. Conserving my energy and avoiding illness become top priorities. In Ottawa, Canada, true summer doesn’t start until June, meaning I spend nearly seven months each year just trying to hang on. Depression creeps in. My rash returns. My mood dips. Social life disappears.

Cold isn’t just uncomfortable—it’s disabling. My hands and feet tremble. The only way I can stay warm outside is by constantly moving to raise my internal temperature and improve circulation—but that exertion often means days of recovery. Even on a cool summer evening, I can feel like I’m freezing from the inside out. I crave warmth, light, dryness, and comfort in ways that are hard to explain. And I know that when winter comes, I’ll need to plan everything around survival, not productivity.

The Workplace Challenge

Then there’s the workplace—a battlefield for anyone with chronic illness. Working a full-time job indoors is mentally and physically unsustainable. Breaks aren’t long enough to eat, rest, move, and recover. Most office spaces lack true natural light, functional kitchens, or flexible spaces. There is nowhere to lie down and reset. I once converted a tiny server room into a meditation and nap space, only to question if being surrounded by electronics and EMFs was making things worse.

I thrive—and desperately seek—natural light, warmth, dryness, and the outdoors. But why do I need these things so badly just to feel "okay"? Being stuck indoors all day drains me. Even when I try to overcompensate during summer, I burn out. The pressure to perform when my body is begging to lie down is indescribably demoralizing. There is nothing worse than trying to meet expectations when simply existing already feels like a full-time job.

The Financial and Emotional Cost

This illness hasn’t just cost me energy. It’s cost me probably over $300,000 in missed income, treatments, private consultations, testing, supplements, quality food, and lifestyle changes—all in an effort to solve something unknown and find ways to function at a basic level. It delayed my entrepreneurial goals, stole my momentum, and forced me to constantly rebuild my life around my symptoms. More than a decade of trial and error, unsupported by the public healthcare system, just to discover that a basic urine test and proper Lyme screening could have revealed the truth years ago.

If you're wondering why I cancel plans, avoid certain foods, or seem "fine" until I suddenly disappear, here's why:

  • I’m not lazy. I’m pacing.

  • I’m not anti-social. I’m exhausted.

  • I’m not picky. I’m protecting my body.

  • I’m not dramatic. I’m not dramatic. I’m hypersensitive—physically, mentally, and emotionally.

  • I’m not overthinking. I’m surviving in a body that no longer follows simple rules.

This is what chronic illness looks like. It’s not always visible. It doesn’t always come with a name people recognize. But it is real, and it has shaped my life in ways I am only now beginning to reclaim.

And that’s why I’m telling this story.

The Slow Disappearance of a Life

The symptoms didn’t hit all at once. They crept in slowly, almost imperceptibly, starting in my early 20s—fatigue that didn’t match my activity level, crashing energy after meals, unexplained sensitivity to cold, and brain fog that made even simple tasks feel heavy. Over time, these strange, shifting symptoms became a quiet force that shaped—and then limited—my life.

I watched my ability to pursue my goals slip further out of reach. I couldn’t sustain work the way others did. Social events, especially during colder months, became exhausting or impossible. Exercise, once something I loved, became a trigger for crashes. I experimented with countless diets, saw dozens of practitioners, and spent hundreds of hours researching late into the night, desperately trying to understand what was wrong with me.

All the while, I looked healthy on the outside. But inside, I was losing years of vitality, momentum, and clarity—without answers.

In Plain English

The mold exposure didn’t begin in adulthood. I grew up in a home that had visible mold issues until I was about 18 years old—an environment that likely laid the foundation for what would later unfold in my body. We used to hear things like, "Just cut off the moldy part, it's fine," or "We all ate this and we turned out okay." That mindset—resilient, maybe, but blind to long-term effects—meant that what seemed harmless at the time quietly became a root cause for something far more serious down the road. On top of that, I was regularly exposed to cigarette smoke indoors and lived in a neighborhood where lawns were routinely sprayed with chemical pesticides. It’s no surprise that this illness stems not just from one trigger, but from years of environmental burden—mold in buildings, contaminants in food and drink, and toxins in the air.

I’ve been living with a long-standing, invisible illness rooted in toxic mold exposure, a weakened immune system, and the lingering effects of past Lyme infection. Together, these issues drained my energy, heightened my sensitivities to light, cold, dust, and certain foods, and sent my physical and mental health on a rollercoaster I couldn’t get off.

What the Tests Finally Showed

  • Mold toxins—especially Ochratoxin A—were found at high levels in my body. These toxins come from mold that grows in damp buildings or contaminated food, and can quietly poison the body over time.

  • My immune system is worn out, especially the cells that protect against infections and regulate inflammation. It’s like my body’s defense system has been stuck in low gear for years.

  • I showed clear signs of past exposure to Lyme disease, which may have triggered or worsened the entire cascade of immune, neurological, and energy problems.

  • My mitochondria—my body’s energy factories—are under strain, which explains why I often feel deeply exhausted, mentally foggy, and prone to crashing even after minimal effort.

What It Feels Like

  • Unpredictable, crushing fatigue

  • Brain fog and difficulty focusing

  • Overreactions to light, cold, dust, alcohol, and certain foods

  • Constant cravings for sugar and carbs

  • Feeling significantly worse in the winter or darker seasons

  • Skin rashes, sinus issues, and unexplained sensitivity

  • The inability to consistently work, socialize, or exercise without crashing

In Short

I live with a mold-related illness that has weakened my immune system, disrupted my energy production, and left me more vulnerable to other infections and sensitivities. This isn’t "just in my head"—it’s a real, physical condition. And after years of doubt and frustration, I’m finally working toward recovery through detox, immune support, and lifestyle changes grounded in real data.

Who Was Right?

It wasn’t any of the medical doctors or modern medicine specialists I saw over the years—none of them ever mentioned mold, not even once. That’s especially surprising considering that up to 40–50% of Canadian homes have visible mold or moisture problems, and many more likely hide mold behind walls, in basements, attics, or HVAC systems—especially in older homes or those with finished basements (according to multiple CMHC studies). You’d think Health Canada would emphasize this in medical training and public health policy. But the truth is, most doctors simply aren’t trained to recognize mold-related illness.

Instead, it was the naturopaths, functional medicine doctors, and environmental health practitioners who consistently raised the alarm. Over the years, probably 90% of the alternative professionals I saw suspected mold as the root cause. Every naturopath I worked with mentioned it, and my most recent Traditional Chinese Medicine (TCM) practitioner was confident that mold—and yeast—were at the core of my issues. Still, I couldn’t fully believe it without hard proof.

I also did a standard Lyme test through my medical doctor in 2020. It came back negative—not because Lyme wasn’t part of the picture, but because Canada’s public testing doesn’t screen for all strains of the bacteria. Years later, with my own money and by stepping outside the mainstream system, I finally got more comprehensive testing. I learned there were, in fact, clear signs of past Borrelia (Lyme) exposure—yet another piece of the puzzle that had been missed. Reported Lyme cases in Canada have increased more than tenfold since 2009, driven by climate change and expanding tick habitats.

Looking Back, Counting the Cost

Now, with these recent lab results, I finally have it—the evidence is undeniable. And yet, it’s hard not to reflect on the decades lost:

  • Over $300,000 spent on therapies, diets, practitioners, missed work, and delayed entrepreneurial goals

  • Countless winter seasons spent isolated, too sick or sensitive to participate in life

  • A life shaped by fatigue, trial-and-error diets, and overwhelming amounts of research

  • More than a decade of waiting, just to finally afford the private tests our public system doesn’t offer

And to think—it was a simple urine test and a better Lyme panel that could have changed everything, years ago.

The cost of being dismissed by a system not trained to see the mold—or the Lyme—was far more than financial. It was a cost paid in time, in relationships, in missed potential. It was life delayed.