What do we do when we lose hope?

on systems that fail, a body that won't stabilize, and the quiet act of holding on anyway

Dear reader,

I had a doctor’s appointment today that I waited a month for. All month, I kept a running list of things I hoped we could explore — possible paths, tiny cracks of light, a shift that might move me even an inch outside of the limbo I’ve been stuck in.

I showed up prepared. I made a makeshift medical chart listing my symptoms, tests already done, and diagnostic routes I hadn’t yet tried. I timed the reading at 4 to 5 minutes, marked that clearly at the top, and set out the door.

Then my car wouldn’t start.

The key turned in the ignition, but nothing happened. I tried again and again. Still nothing. I broke down crying under the magnolia tree out front — rain soaking through my coat — with only 40 minutes to get to an appointment that was 30 minutes away. I called my mum and stepdad. Thankfully, they were nearby and came to pick me up.

Inside the doctor’s office, I sat in the chair sketching in my notebook, still clinging to the possibility of recovery — even a small one. I handed him my document. He glanced at it, uninterested. Told me we could look at one thing. So I pointed to the most pressing issue: the false hypoglycemia symptoms. The ones that have made it hard to wander very far. The ones that have caused me to black out and nearly black out at school and in stores and hospitals. The reason I carry snacks everywhere — in my jacket pockets, my glove box, my friend’s bags.

I explained that I’ve had a full glucose workup: fasting glucose, a 2-hour and a 4-hour test, and three months wearing a continuous glucose monitor. My levels are normal. My A1C optimal. I explained that it wasn’t true hypoglycemia. It wasn’t diabetes, either. I explained that my nurse at the Long COVID clinic said it was a dysfunction in how my body uses energy, possibly tied to mitochondrial impairment or dysautonomia. In conditions like these, the body sometimes struggles to deliver or utilize glucose at the cellular level, even when blood sugar levels look normal on paper. It’s not a supply issue, but an issue of access. My cells aren’t getting the fuel they need, and my nervous system responds as if I’m in crisis, flooding me with adrenaline, pushing me into survival mode. All. The. Time.

I told him how many people with Long COVID experience this exact symptom — how there’s growing research linking it to dysautonomia, to mitochondrial dysfunction, to impaired fuel utilization caused by a damaged nervous system. I was desperate to be heard.

He paused and said, “I don’t mean to sound cruel or mean,” and then didn’t finish the sentence. Instead, he told me not to get my hopes up. His tone had already closed the door. He’d decided who I was and what my case meant.

In the end, the only thing I walked away with was a serum copper test. I’d read promising research on copper depletion after COVID, and this was one of the few practical next steps I could take before trying a supplement. It was the one thing I got.

I walked across the parking lot to the café and sat at a table with my parents and a friend who dropped by. I cried again.

I told them I’d been holding on to the hope of this appointment all month. And how often, in the background of everything, my mind has wandered toward death. I’m not in crisis. But I’m tired. Tired in a way that makes it hard to want to stay.

We cracked a few morbid jokes. I said they could drop me off at the Patullo Bridge, and I’d swim home with heavy stones in my pocket a la Virginia Woolf. I told them my car always breaks down when I do. I assured them I’d be okay, but that this — this life with no stability, no answers, no change — feels impossibly hard to do on my own.

The most burdensome symptoms I live with aren’t even the blood sugar crashes. It’s the constant adrenaline. The insomnia. My body is always in alert mode, running from something that isn’t there. I flinch at my own shadow. I lie in bed at night with my ears perked like an animal, waiting for something to shift, for someone to come sit beside me, for rest to find me. It never does.

I reassure the doctor that it’s not psychological. That my default setting — before all of this — was joy. I’m not prone to depression. I wake up wanting to do things, to be in the world. But living in a body that misfires all day long, one that constantly demands adaptation and vigilance, changes that. It wears you down.

I remind him that it’s physiological. My nervous system is dysregulated, due to a form of post-viral dysautonomia called hyperadrenergic POTS. My body dumps adrenaline as if I’m running from a bear when I’m just trying to rest. My heart rate spikes while lying down. My pupils dilate in a dark room. My throat tightens. My body stiffens. My breath struggles to reach the bottom of my lungs. My body is stuck in survival mode, governed by a damaged autonomic nervous system that can’t distinguish safety from threat, a malfunctioning feedback loop in the body that’s been triggered by a virus. My body is not producing fear. It’s producing hormones that mimic it. There’s a difference.

People always ask: Have you tried cold plunges? Box breathing? Yoga nidra? I have. I’ve tried every single thing that’s ever been suggested to me. I’ve spent thousands of dollars I don’t have on supplements, lab tests, wearable devices, acupuncture, red light therapy, infrared saunas, adaptogens, and endless nervous system tools. I’ve tried stillness, movement, meditation, distraction, breathwork, herbs. I have clawed my way through every possible door I could find (or at the very least, could afford).

People want to chalk this up to mental health. I can see it in their eyes. And I want to shake them because why would I be fighting so hard if it were just in my mind? Why would I spend my evenings reading medical studies for fun? Why would I stop doing all the things I love if I had a choice?

I have never felt this trapped in my own body. The heart is an engine. Mine stutters and stalls. It idles too low when I’m trying to rest, and redlines when I’m just standing up. If I push it too hard, I could burn out the system. Shorten the lifespan of an already strained machine. So I coast. I ration. I idle in neutral when I want to be flying down the highway.

What do you do when you’re afraid of what your body might do next? How do you explain to the people who love you — that it’s not that you don’t want to go out, or talk, or laugh, or join in — it’s that your engine light is blinking and your brakes aren’t working right? How do you ask people to keep showing up for you when you can barely show up for them?

We don’t know how to care for people who are disabled — even temporarily. Our systems don’t make space for uncertainty. They don’t want to look at what can’t be fixed. If it can’t be seen on a scan or measured in a standard range, then it must not be real. Medicine still relies heavily on biomarkers and visible pathology — broken bones, tumours, blood work that lights up like a warning sign. But many chronic illnesses, including Long COVID and dysautonomia, don’t behave that way. They fluctuate. They move through the body, disrupting systems without leaving clean trails.

And because of that, people fall through the cracks. We become too complex, too time-consuming, too uncertain to deal with. We’re referred out, pushed off, told to wait, to rest, to stop Googling, to manage our stress. The burden shifts onto us to prove we’re sick enough to be taken seriously, even as we’re barely hanging on. And when the system fails to find a fix, it quietly implies that we’ve failed, too. That maybe the problem is us. That maybe we’re imagining it.

But we’re not. We’re living in bodies that aren’t functioning the way they used to, trying to survive in a medical model that was never designed for us. One that prefers resolution over recognition. Certainty over care. And when you’re living with something invisible, unpredictable, and chronic, that absence of recognition can be just as devastating as the illness itself.

There are over 200 documented symptoms of Long COVID. Some people are bedbound. Some are being spoon-fed by their partners. Some are applying for MAiD — not because they want to die, but because that’s the only form of care the system offers.

I’m lucky, I know. I can still show up at school, most days. I can still take the occasional journalism assignment. I can still spend an afternoon with friends, though it often costs me a full week of recovery. I can still do some things. But everything has a price now. I’m always calculating. Always bracing. Always weighing joy against aftermath.

We don’t have a politics of care. We barely have an ethos of listening. But what would it look like if we did? What if someone looked at you and said, “I see you. I know this is hard. I can’t fix it, but I’m here.” What if our doctors could drop their egos? Trust that their patients know their bodies? Open themselves to the idea that someone might be both deeply ill and deeply informed?

Did you know that, on average, it takes women four to ten years to get diagnosed with many chronic conditions? That our pain is still seen as exaggerated, our symptoms dismissed as stress? Did you know that COVID has become so politicized that even my own brother told me Long COVID isn’t real, even though post-viral illnesses are nothing new? They’ve been documented since at least the 1918 flu pandemic.

None of this is new. What’s new is the scale.

So when I walk into a doctor’s office with detailed notes, studies, and ideas, it’s not because I’m difficult. It’s because data never lies, and I’m trying to survive. Each time I reach out, I do it hoping for something to change. But often, I walk away with nothing but the weight of shame and the echo of silence.

I don’t know how to hold on to hope anymore. I’m coming up on two years of living like this. And my body still doesn’t remember how to work.

And I’m not alone in this. I’ve read the stories. People who were once marathon runners and are now housebound. Parents who can no longer care for their kids. Nurses who spent decades caring for others, now bedridden, using up all their savings on wheelchairs, mobility aids, trial treatments that aren’t covered. I’ve seen the GoFundMe links. The Reddit threads. The comments on Long COVID forums that start with “I don’t want to be here anymore.” Some don’t make it through. Some do.

Hope is a word we throw around easily — just stay hopeful, don’t lose hope, you have to keep the faith. But what is hope, really? The word hope comes from the Old English hopa, meaning “confidence in the future,” which itself may stem from the Proto-Germanic hopōn, to “leap” or “expect.” I think about that sometimes, how hope, at its root, is a kind of reaching. Clinically, hope is often defined as a combination of agency (the belief that you can take action) and pathways (the belief that there are routes available to you). But what happens when both feel inaccessible?

For many people with chronic illness, hope becomes less about recovery and more about relief. Less about return and more about adaptation. It’s quieter than people think. Less inspirational. More about choosing, again and again, to live inside a story that doesn’t yet have an ending. A story you didn’t want to be written into, but one that you’re trying to shape anyway.

Sometimes hope looks like researching for hours with no guarantee of answers. Sometimes it looks like crying in a parking lot and still getting your blood drawn. Sometimes it’s as small as saying, I want to stay, even when part of you doesn’t know how.

I wish I had a more hopeful ending for you. But maybe this is the truth of it, that some stories don’t resolve, they just keep unfolding.

Until next time,
Kay