Trust me, I’m chronically ill

12 min readFeb 10, 2025

The bias we all have is what is stopping us from understanding and working with dynamic illness and disability

AI generated stylized image of a woman with blonde hair leaning over a microscope in pain. — Image was AI generated using Canva

Just push through — that’s my internal monologue as I feel my eyelids flickering, my dizziness rising, acid burning the inside of my stomach. Dull aches spread through my back, shoulders, neck, hips, arms, and hands. A piercing pain sears through my forehead.

As the moments pass and I take the vials, transferring the flies from one vial to another, painful numbness spreads down my legs. Nausea rises, and the dull aches in my back and shoulders sharpen and grow louder. I shift in my uncomfortable seat, which does not adjust, constantly reaching over for the next vial. Tap, tap, tap, I transfer the flies from the old vial to the fresh one, giving them a meal they find delicious but that smells like rotting vegemite to me. (This does nothing to help my nausea). I am hot all over, and the lights seem blindingly and painfully bright.

I’m not going to make it, I think as I run to reach the loo but end up standing over the lab bin, dry heaving. My sense of smell acute, as the rogue lab flies buzz around the disgusting fly waste, the smell of which cannot be described — only experienced.

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This memory is branded into my brain from when I was completing my PhD and trying to get through my lab work. I remember my mood sinking when I realised I had thousands of vials to go and was slowing down, making it one of the many days when the work would take hours longer than expected. The loneliness struck when I realised that I was unlikely to see anyone else that day, just like the days that preceded it, and followed it. Although those moments are clear, how many times they happened or even which experiment I was conducting is hazy. Was that one of the days my husband brought me the only foods I was able to tolerate without an adverse reaction? Or had I brought enough food for myself that day? Was it before or after the gall bladder surgery, the fibro diagnosis, or the pandemic? I don’t really remember.

So boo hoo right? I was sick, why was I working at all? Go home, get better, come back — why are you complaining to me about it? Surely someone with acute sickness would have taken sick leave, told their supervisor, had someone cover for them. Why was I alone? Why didn’t I ask for help?

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Well, the answers are complex and nuanced and yet, can be summarized thus: because I am chronically ill. My conditions sometimes improve, sometimes get worse, but they will never be “all better”. This is called dynamic illness or disability — conditions that fluctuate in severity from day to day, hour to hour, or even moment to moment, meaning one’s physical and cognitive capacity is not fixed.

More answers: because the lab I was in had a solo culture. Because I was doing a PhD. Because I was in academia. Perhaps. There’s a lot I could say here (a whole other article in fact), about how PhDs are not equal, even within the same discipline. The amount of work one person puts in or the help they receive can be vastly different from another’s, depending on the lab culture, the funding, the project, or the institution. Even some of the kindest people you meet in academia still view a PhD as a rite of passage. The pervasive belief is that PhDs are supposed to be hard. You place pressure on yourself to be worthy of it. With your team of one, you are competing to publish in the same journals as those with large well-funded labs. Your fellow PhD researchers pressure you to keep up, parroting things like, “You’ll never succeed if you treat this like a 9–5.”. Unwillingly and mostly unknowingly, they contribute to their own poor health and toxic workplace cultures.

I could talk endlessly about academia’s shortcomings and the poor working conditions during PhDs — until quite literally whatever comes home ceases to even be a cow anymore because millennia of artificial or natural selection have speciated it into an entirely different creature.

But none of that actually strikes at what I believe the core issue to be.

At the heart of this issue is that dynamic illnesses and disabilities are not well understood. There is resistance to empathy. And chronic illness sufferers won’t be treated better in education, academia, or any workplace until we are actually trusted, and the true principles of equity are accepted and embraced.

As I write about the nuances of needing better conditions in academia, I’m reading about a high-profile lawyer who had to quit her job due to a condition affecting her muscle fibres. Not because she chose to leave, but because the glorification of overwork infected her industry, and her attempts to reduce her workload were seen as laziness or a lack of commitment. Another person, working in retail, was let go because she could no longer carry heavy boxes of stock — just one task on a long list of duties she was still capable of performing. A paediatric oncology nurse had to leave because chronic pain and illness made sustaining 12-hour shifts impossible. Each person’s story is unique, but they all share a common thread: they had to leave productive jobs because their needs could not be accommodated.

Even when employers believe they are being flexible or accommodating, it’s often just lip service — offered only until they perceive those accommodations as affecting the desired outcome (whether it actually does not). Managers frequently get stuck in rigid thinking and resort to micromanagement to meet team goals — a nightmare for everyone, but an impossible situation for someone with a dynamic disability.

In a 2023 investigation in the US on why prime-aged adults (25–54) are not working, over a third cited illness or disability. This amounts to roughly 10 million Americans unable to work. Not all of these people can return to the workforce, and perhaps not every job can be modified for every person, but the shift to remote work brought 1.8 million of them back to the workforce — because it made work more accessible for them.

A study of over 3,000 Canadians with mental and cognitive disabilities found that nearly 36% reported unmet workplace modifications, and almost 20% said they couldn’t get the flexibility their disability required. Women identifiers and those in traditionally women-dominated industries faced greater challenges securing accommodations, often compounded by precarious or temporary work. Many feared that pushing for flexibility would make their employment situation even more fragile.

Other countries have similar issues, even in countries where social equity is embraced in policy, these are still complex societal and economic problems to solve. But the truth is economists have known for quite some time that granting flexibility and accommodations leads to productivity gains through inclusion, reduced reliance on welfare, and long-term returns on investment. Over a lifetime, the employment of a disabled individual generally offsets the initial investment. This applies even to large expenses like job restructures or building modifications — costs that often pay off in the long run.

There are also broader economic spillovers: more people working means more consumer spending, greater workforce participation, and reduced social inequality. These factors combine to produce a net positive effect on the economy.

The economic benefits of enabling more people to work are twofold: first, it gives those who may otherwise rely on family or government support the dignity of being able to support themselves. Second, it boosts overall productivity as more people contribute by working, paying taxes, and spending in the economy.

But it’s not just good for the economy — it’s good for individuals. Research shows that if people with chronic illnesses and disabilities can work in a way that doesn’t exacerbate their condition, they gain meaning and purpose. I know that I don’t want my illness to stop me from supporting myself, progressing in my career, or building stronger social connections (yes even remotely!). While work may not cure an immutable health condition, it can improve overall well-being and the interaction between mental and physical health — a relationship I wish, as a biologist, we could stop parsing into a false dichotomy.

You are your biology — a combination of genes and environment — so your mental health is your physical health, and systems in your body are constantly interacting. The only reason to label these aspects separately is to better understand them and how to treat them, not to place judgement on whether a symptom is “just anxiety”, because that’s neither accurate nor helpful. But I digress (and yes, I’m sure you’re starting to see those cows’ genomes mutating now).

So, if we know this is better for literally everyone, why are we not doing a better job of it? Ah! WELL — it’s time to address the elephant in the room.

Because. No one. Trusts. Us.

Or at least, most don’t understand the day-to-day experience of being dynamically disabled, and due to inherent bias, many won’t believe you even when you explain it. Think about it: you have two people. One is a scientist who came from a modest, working-class upbringing, put themselves through multiple degrees, completed a PhD, and worked at The University of Oxford. The other is unemployed, from a simple background, wakes up late, and watches TV for a few hours, and it might be after 12pm before they do anything you might consider productive. They say they find it hard to work regular jobs because they can’t wake up as early as required.

Now, imagine they both tell you they have a chronic illness that limits their physical capacity and energy levels, but that is different day to day. They both need a lot of rest and suffer from pain, fatigue, cognitive and neurological difficulties and malaise. What do you think?

If you’re a good person, I’m sure you believe them both, right? But how does that belief translate into how you perceive them? How does it shape your assumptions about their capabilities?

Maybe you think the first person is more resilient. Maybe they’re less sick than they claim. After all, they’ve accomplished so much — perhaps it’s really just anxiety holding them back? As for the second person, maybe they’re simply not disciplined. Waking up late and watching TV doesn’t sound productive — perhaps they’re just depressed from a lack of routine?

Well, here’s the truth: they’re both ME. I am both of these people. I created this contrast to show how easy it is to fall into bias. It’s automatic. It triggers a desire to evaluate, suggest solutions, or even downplay what someone tells you. If you’re thinking, “Not me, I never judged them,” then you’re either lying or you deserve an award for being the most empathetic person on the planet. But for the rest of us — this is what we’re doing to chronically ill and disabled people ALL THE TIME.

If you want to be an ally, the best thing you can do is trust us. Believe what we tell you. Trust me when I say my 24 hours are not the same as yours.

I know how common these biases are because I have them about myself — hell, I even have them about others. It took me years to accept that I am a chronically ill and dynamically disabled person. I couldn’t get past the idea that if I just pushed harder, tried more, or worked better, I could “overcome” this. I could do the same as everyone else — or even more. Even now, despite everything I’ve just written, I catch myself thinking, “I just need to handle this better.” But the truth is, I can’t. And that mindset is exactly why my health worsened. It’s why I burnt out. Pushing through is not a thing.

When I hear about people with the same diagnosis as me who seem capable of more physically, I wonder: Are they still meeting the diagnostic criteria? Are they improved? Do they also have these other diagnoses? Do I just have it worse? How are they doing that?!

A nurse recently asked if I do yoga and meditation. I told her yes, every day — they’re both helpful. But they can’t fully resolve my nervous system dysfunction. Her response? “You need to be really consistent and basically do them every day for years for them to work.”

This suggestion showed she didn’t understand my illnesses. She didn’t believe me when I told her that I’ve done every evidence-based lifestyle modification: good food, exercise (cardio, resistance training, yoga), mindfulness, CBT, and even hypnotherapy — consistently, FOR YEARS.

After the appointment, I pulled up my apps and ranted to my husband. “According to my Calm app, I’ve done 1,040 mindful days across 4,532 sessions. That’s 1,799 hours and 12 minutes of mindfulness over the past 3–4 years. And according to my yoga app, I’ve done 431 practices, totalling 140 hours. That doesn’t even include the in-person classes I did twice a week before that.”

If yoga and mindfulness were going to “work” (whatever that means in this context), they would have by now.

These suggestions are tantamount to suggesting that mindfulness and yoga could have treated my mum’s lung cancer. Spoiler alert: surgery, chemotherapy, and a new trial drug did that. Did mindfulness and exercise help? Absolutely. Will they continue to help all of us in some way every day? Of course. But if they were able to resolve these kinds of diseases and disabilities, I’d be the most well person alive (well, I couldn’t half be the most well person dead, now could I?).

But if the medical system does it, workplaces across industries do it, and I even do it to myself, then the fault does not lie at the feet of the individual. Our culture glorifies overwork and worships productivity. We live in a society that equates waking up early with discipline and sleeping late with laziness. Pushing through is stoic and worn as a badge of honour, while anything else is seen as weakness. Spend five minutes on TikTok, Instagram, or YouTube, and you’ll find millions of posts pushing the same productivity tips: get up earlier, sleep less, stick to a rigid schedule, and take fewer breaks. Please — my nausea is rising again. Needless to say, this advice often contradicts actual evidence on productivity, so it won’t help you. But what’s consistent across these posts is the same ‘toughen up’ mentality, where badges like resilience and worth are pinned only on those achieving optimal performance. As if human experience were no different from the algorithm that enticed you to watch that content in the first place.

This is because we have a tendency to judge people’s worth not by who they are and not even by how much they produce, but by our perception of their productivity and how visibly they produce it.

These entrenched biases underpin how we treat chronically ill and disabled people and are the real barriers to flexible work and accommodations. If you can’t fit into a prescribed schedule, hustle hard, or power through, you’re seen as unmotivated, less competent, and less productive. We assume that if someone isn’t performing according to rigid productivity standards, they are failing — not that the system wasn’t built to include them.

The conflation of productivity with worth often feels automatic because status and contribution have long been connected in human social systems. Research on primate hierarchies (yes including humans), suggests that our tendency to judge worth based on visible output is deeply ingrained. In modern society, productivity has become a common marker of status, reinforcing these biases even when they don’t reflect someone’s actual value.

But here’s some more truth: productivity doesn’t look the same for everyone. Remember when I said my 24 hours is not the same as yours? Depending on your situation, I might be working ten times as hard to maintain a basic standard of wellness — or you might be working ten times harder than me. And that is not underperformance — that’s meeting the requirements for survival.

Until we accept that everyone starts from a different place and requires different accommodations — and that those accommodations take nothing away from others — we will continue to fail millions of people. And that failure doesn’t just hurt them, it hurts all of us.

The fault does not lie with the individual, but responsibility does. We need workplaces that don’t just ask, ‘What do you need?’ but actively challenge their own perceptions and follow through, creating mutually meaningful ways for us to contribute. And we must trust that the majority of people want to work, be productive, and contribute — they’re not trying to take advantage of anyone.

So yes, trust us. Trust me. And I’ll trust you.

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Refs and further reading:

Trust me, I’m chronically ill

Written by Tara-Lyn Camilleri, PhD