Ever woken up groggy and assumed your sleep was terrible, only to find out everyone else around you feels the same way? I first realised sleep was wildly misunderstood when my friend with chronic fatigue syndrome told me she felt guilty for not being the morning sunshine person Instagram seems to worship.
That moment planted a seed: what if the problem isn’t sleep itself, but what we believe about it? Toss in a few tech gadgets, a dozen articles about sleep hygiene, and the relentless push to optimise, and it’s easy to forget that sleep, especially in chronic illness, isn’t one-size-fits-all.
[Above] This article was inspired by a webinar conducted between Active Health Clinic and Specialist Sleep Physician Dr. David Cunningham.
1. Why Good Sleep Looks Different for Everyone (Especially with Chronic Illness)
When you think about sleep quality and duration, it’s easy to get caught up in the idea that there is a single, universal standard for “good” sleep. Media headlines, sleep trackers, and even well-meaning advice often suggest that everyone should aim for the same number of hours or the same kind of sleep cycle.
But the reality - especially for those living with chronic illness or sleep disorders - is much more complex. There’s no one-size-fits-all definition of good sleep, and understanding this can help reduce anxiety and set more realistic expectations for your own rest.
Four Ways to Define “Good” Sleep
Dr. Cunningham, a leading voice in chronic illness sleep research, emphasises that “sleeping well requires a healthy body and a sound and healthy mind.” For many people with chronic illness, this means that sleep will naturally look and feel different than it does for someone in perfect health. To understand why, it helps to look at the four main ways sleep quality is defined:
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Subjective Experience: How does sleep feel to you? This includes how easily you fall asleep, how often you wake up, and how refreshed you feel in the morning. For people with chronic illness, sleep may feel lighter or more fragmented, but that doesn’t always mean it’s “bad.”
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Observer Notes: What does your sleep look like to someone else? A bed partner might notice restlessness, snoring, or frequent awakenings. Sometimes, these observations clash with your own experience.
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Sleep Trackers and Devices: Activity trackers and apps measure movement, heart rate, and sometimes estimate sleep stages. While these tools can provide useful data, they don’t always capture the full picture - especially for those with chronic illness sleep patterns that don’t fit the “norm.”
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Biological Measures: Clinical tools like EEGs measure what’s happening in your brain during sleep. These tests can reveal disruptions or unusual patterns, but even here, what’s “normal” can vary widely between individuals.
Even among healthy people, these definitions can conflict. You might feel like you slept poorly, but your tracker says you got enough deep sleep. Or, you might wake up feeling fine, but your partner says you tossed and turned all night. For those with chronic illness, these differences are often even more pronounced.
Why Sleep Quality and Duration Are Different with Chronic Illness
Chronic illness often affects your body’s ability to regulate sleep. Biological changes, pain, medication side effects, and stress can all disrupt sleep cycles. This means that even if you set aside plenty of time for rest and practice good sleep hygiene, your sleep might still look or feel different from what you expect.
It’s important to recognise that the large-scale studies linking poor sleep to health risks - like heart disease, diabetes, or Alzheimer’s - are usually based on populations who choose to restrict sleep, not those who struggle with sleep due to illness. If you’re living with a chronic condition and prioritising rest, these warnings may not apply to you in the same way.
Yet, the media rarely makes this distinction, often amplifying anxiety about sleep quality and duration for people whose bodies function outside textbook norms.
The Problem with “Normal” Sleep Expectations
One of the biggest challenges for people with chronic illness sleep issues is the expectation that sleep should be “normal.” When your sleep doesn’t match what you see in the media or on your fitness tracker, it’s easy to feel like you’re failing or making your condition worse.
But as Dr. Cunningham points out, “sleeping well requires a healthy body and a sound and healthy mind.” If your health is compromised, your sleep will naturally be different. That doesn’t mean it’s broken or that you need to “fix” it to match someone else’s standard.
In fact, sleep quality for chronic illness is more of a barometer of your overall health than a diagnosis or a cure. Trying to force your sleep to look “normal” can create more stress and actually make sleep harder to achieve. Instead, it’s more helpful to focus on what’s realistic for your body right now and to recognise that good sleep can take many forms.
Rethinking Sleep Hygiene and Tracking
While sleep hygiene, like keeping a regular schedule, limiting screens before bed, and creating a comfortable sleep environment, can help, it’s not a guarantee of perfect sleep, especially with chronic illness.
Similarly, objective longitudinal sleep data shows that irregular sleep can increase the risk of chronic illnesses, but this doesn’t mean that every restless night is a cause for alarm. Sleep problems are often overlooked in healthcare settings for chronic illness patients, so it’s important to advocate for your own needs and not judge your sleep by someone else’s standards.
Ultimately, “good” sleep is personal. It’s shaped by your health, your environment, and your unique experience. By letting go of rigid expectations and focusing on what works for you, you can reduce anxiety and find a more compassionate approach to rest.
2. Fatigue vs. Sleepiness: Stop Blaming Sleep for Everything (And Why Rest Matters)
When you live with chronic illness or fatigue syndromes, it’s easy to blame every dip in energy on poor sleep. Even many professionals use the words fatigue, tiredness, and sleepiness interchangeably. But these terms are not the same, and understanding their differences can help you manage your symptoms, and your expectations, more effectively.
Fatigue, Tiredness, and Sleepiness: Not Just Semantics
Let’s break down these commonly confused terms:
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Fatigue: This is a deep sense of physical or mental exhaustion. You may feel spent, like you have no energy left, even if you’ve slept well. Fatigue is a hallmark of chronic fatigue syndrome and other fatigue syndromes, and it’s not simply about needing more sleep or rest. Fatigue is often not relieved by rest or sleep.
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Tiredness: This word is often used as a catch-all, but it can mean feeling worn out, sleepy, or even just mentally drained. It overlaps with both fatigue and sleepiness, which is why it can be confusing. Tiredness generally will respond to rest and sleep.
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Sleepiness: This is the urge to sleep - think heavy eyelids, nodding off, or feeling drowsy. Sleepiness is usually relieved by sleep, unlike fatigue.
In a clinical setting, mapping these feelings to biology matters. Treating sleepiness is not the same as treating fatigue. If you’re sleepy, you need sleep. If you’re fatigued, sleep alone probably won’t fix it.
As one expert puts it: Sleep ain’t the cure for fatigue.
Why Sleep Isn’t Always the Solution
It’s tempting to see sleep as the answer to every energy problem, but that’s not how the body works, especially when you’re dealing with chronic fatigue syndrome or other fatigue syndromes.
Sleep deprivation can certainly make things worse, leading to cognitive decline and mental health disorders. But chronic fatigue involves other biological layers, such as immune dysfunction, hormonal imbalances, and post-exertional malaise. In these cases, sleep hygiene alone cannot fix chronic fatigue.
Relying on sleep as the cure for all your tiredness can set you up for disappointment and anxiety. If you wake up feeling exhausted, you might assume you have a sleep problem, when in fact, it’s normal for most people to take time to feel fully alert. This overemphasis on sleep can lead to a cycle of frustration and worry, especially if you’re already struggling with chronic illness.
The Myth of the Morning Superhero
Our culture loves the idea that you should leap out of bed, ready to “attack the day” as soon as the alarm rings. But this is a myth for the vast majority of people. Research shows that only about 3% of the population have a natural sleep clock that allows them to feel instantly alert in the morning. For everyone else, about 97%, it’s perfectly normal to need up to two hours to reach around 80% of your optimal performance after waking.
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Feeling groggy or wanting to hit the snooze button is a normal human experience.
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It does not mean your sleep was poor or that you have a sleep disorder.
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Expecting to wake up full of energy every day is unrealistic for most people, especially those with chronic illness.
Rest: The Overlooked Key to Restoration
When you’re managing chronic fatigue syndrome, sleep issues or post-exertional malaise, it’s important to recognise that rest is just as important as sleep, sometimes even more so. Rest can mean lying quietly, meditating, or simply reducing stimulation. This kind of restoration helps your body recover in ways that sleep alone cannot.
So, if you find yourself feeling “spent” or unable to bounce back after activity, don’t assume more sleep is the answer. Instead, focus on building rest into your day. This approach can help you better manage the unique challenges of sleep fatigue and chronic illness.
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Fatigue is not just sleepiness.
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Rest is essential for recovery, especially after exertion.
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Don’t let cultural myths about sleep shape your expectations or self-judgment.
3. The Hidden Mechanics: Body Clock, Adrenaline, and the Real Roots of Sleep Trouble
When you live with chronic illness or fatigue syndromes, sleep problems aren’t just about tossing and turning or having a restless night. The real roots of sleep trouble go much deeper, involving your body’s internal clock (the circadian rhythm) and the constant hum of your arousal system (adrenaline and the fight-or-flight response). Understanding these hidden mechanics is key to finding sleep management strategies that actually work, especially when standard advice like “just get more rest” falls flat.
Circadian Rhythm Disruptions: Why Your Body Clock Goes Off Track
Your circadian rhythm is your body’s natural 24-hour clock, designed to keep you alert during the day and sleepy at night. This rhythm relies on regular cues from the world around you, like sunlight, movement, and meal times, to stay synchronised. But chronic illness often means you spend less time outdoors, have less physical activity, and keep irregular routines. You might not eat meals at set times, or you may nap during the day because of fatigue.
All of this leads to what experts call a “flattened” circadian rhythm. Instead of feeling awake during the day and sleepy at night, you might feel tired all day and then struggle to fall asleep at night. The normal peaks and dips of your body clock become shallow, leaving you in a constant state of low energy and unrestful sleep.
For some, the circadian rhythm doesn’t just flatten, it shifts later. You may not feel sleepy until well past midnight and find it nearly impossible to wake up in the morning. This delayed rhythm is common in chronic illness and makes it even harder to get restorative sleep.
The key to addressing these circadian rhythm disruptions is not just about sleep hygiene, but about “circadian retraining.” This means exposing yourself to morning light (ideally outdoor light), keeping regular meal times, and moving your body, even gentle movement helps. These cues help reset your body clock, making it easier to fall asleep at night and feel more awake during the day.
Adrenaline and the Overactive Arousal System: More Than Just Stress
Another hidden mechanic behind sleep trouble in chronic illness is your arousal system, driven by adrenaline and the sympathetic nervous system. When your body is unwell, it often shifts into a protective, high-alert mode - what you might know as “fight or flight.”
This isn’t just about feeling anxious; it’s a biological response. High adrenaline levels at night keep your brain and body on edge, making it hard to drop into deep, healing sleep. You might feel like you’re sleeping lightly, waking easily, or even hovering between sleep and wakefulness. Sometimes, you may even feel awake when you’re actually asleep, making it difficult to judge how much rest you’re truly getting.
This overactive arousal system is not something you can simply “think away.” It’s a real, physiological shift that makes sleep elusive and fragile. That’s why sleep management strategies for chronic illness need to go beyond basic sleep hygiene rules and target both body clock tuning and stress modulation.
Smart Sleep Management: Beyond Sleep Hygiene
The most effective sleep management strategies for chronic illness focus on two main areas: resetting your circadian rhythm and calming your arousal system. Circadian retraining - using morning light, regular meals, and gentle movement - helps restore your body clock’s natural rhythm. But equally important is learning to manage stress and reduce adrenaline’s grip on your nights.
This is where Cognitive Behavioral Therapy for Insomnia (CBT-I) comes in. CBT-I is proven to help, even for people with chronic illness. It works by changing the beliefs and behaviors you’ve developed around sleep, especially the anxiety and rigid rules that often build up after months or years of poor sleep. With CBT-I, you learn to let go of unhelpful thoughts and adopt healthier sleep habits, making it easier for your body and mind to relax at night.
People with chronic illness need to be better at stress management than others, not because they’re weak, but because their physiology demands it.
In the end, sleep in chronic illness isn’t just a side effect, it’s a complex dance between your body clock, your stress response, and your daily routines. By understanding these hidden mechanics and using evidence-based tools like circadian retraining and CBT-I, you can start to untangle the web of sleep, fatigue, and chronic illness. The goal isn’t perfection, but progress: tuning your body clock, calming your arousal system, and reclaiming the restorative sleep your body needs to heal.
TL;DR:
Don’t mistake different sleep for broken sleep: In chronic illness, fatigue and sleep have a complicated relationship. Expect some sleep weirdness, focus on the body’s real needs, and let go of media-fueled sleep perfectionism.
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