If you're living with an invisible illness-like ME/CFS, fibromyalgia, POTS, or chronic pain - then you likely already know the frustration of waking up feeling just as tired as when you went to bed. 

The world tells us that “a good night’s sleep fixes everything.” But for many people with complex, chronic health conditions, sleep doesn’t feel restorative. And that’s not because you’re “doing sleep wrong”, it’s because the body, brain, and nervous system are under stress. 

So let’s dive into the real science of sleep, how invisible illness can disrupt it, and what you can do to gently support better rest-especially if you’re battling insomnia. 

 

 

😴 Why Is Sleep So Unrefreshing? 

Sleep in chronic illness is often non-restorative. That means even after 8, 10, or 12 hours of sleep, you wake up feeling depleted, sore, foggy, or flu-like. 

Here’s why: 

• 🧠 Dysregulated nervous system - Constant “fight or flight” activation disrupts deep sleep cycles. 

• 🧬 Chronic inflammation - Impacts the quality and depth of sleep. 

• ⏰ Disrupted circadian rhythms - Common in those with fatigue syndromes or chronic pain. 

• 😖 Pain & discomfort - May prevent the body from fully relaxing. 

• 🌀 Hyperarousal - The brain may be wired for alertness, even when the body is still. 

Sleep doesn’t just depend on the amount of hours - you need to reach the deeper stages (like slow-wave and REM sleep) for true rest and recovery. 

 

🔺 The Sleep Triangle: Understanding Sleep Physiology 

There are three key players in the science of sleep - we call this the Sleep Triangle. 

1. Circadian Rhythm 

Your internal “body clock.” It regulates sleep-wake patterns on a 24-hour cycle and is influenced by light, melatonin, temperature, and routine. 

2. Sleep Drive 

Your body’s need for sleep builds the longer you're awake. Roughly, for every 2 hours awake, we generate the need for 1 hour of sleep. 

3. Wake Drive 

Keeps you alert during the day. It balances with your sleep drive-and both are influenced by your circadian rhythm. 

So when someone says, “just get more sleep,” they’re missing the point. You could be in bed for 10 hours and still not get the quality of sleep you need if these three systems are dysregulated - which is common in invisible illness. 

 

🌙 What Is Sleep Hygiene - and Does It Actually Help? 

Sleep hygiene refers to habits and routines that support healthy sleep. These include: 

• Going to bed and waking up at a similar time daily 

• Limiting screen time 1 hour before bed 

• Avoiding caffeine later in the day 

• Creating a cool, dark, quiet sleep environment 

• Avoiding naps too close to bedtime 

And while these are helpful for most people - those with insomnia or chronic illness often already know these tips. 

So let’s go deeper. 

 

🛏️ What If Sleep Hygiene Isn’t Enough? Try Sleep Safety. 

When sleep is something you struggle with night after night, your brain may start to associate bed with frustration, pressure, or restlessness. That’s where we shift from sleep hygiene to sleep safety. 

Sleep safety means creating an environment and mindset that invites rest, rather than forcing it. 

Ask yourself: 

• Does your bed feel like a place of comfort or tension? 

• Do you dread bedtime because of past sleep struggles? 

• Is your brain racing the moment you lie down? 

If yes, your goal isn’t just sleep - it’s retraining your nervous system to feel safe in rest. 

 

🌌 Managing Insomnia in Invisible Illness 

Let’s bust a myth: Insomniacs are often GREAT sleepers. Not in results, but in effort-they’ve often tried everything. 

So before suggesting more “tips,” ask: 

What have you already tried?
What’s working (or not working)?
Is the problem physical restlessness, a racing mind, or both? 

If you haven’t yet explored sleep therapy, ask your GP about CBT-i (Cognitive Behaviour Therapy for Insomnia), which has some of the strongest evidence for long-term results. You can also ask about a referral to a sleep physician, especially if there’s pain, hypersomnia, or suspected sleep apnoea involved. 

 

 

🧠 What’s Keeping You Up? Body vs Brain 

If your body feels restless: 

• You may have under, or over-done it that day 

• Try gentle stretching, heat therapy, or a warm bath 

• Avoid overstimulating activities before bed 

• Listen to what your body needs, not what your brain wants to push through 

If your brain won’t stop racing: 

• Try breathwork, meditation or guided sleep stories 

• Use pen and paper: journaling or “brain dumping” before bed 

• Find a mindfulness app or voice you actually like-yes, that matters 

• Try affirming phrases like:
  “I don’t need to sleep right now. I just need to rest.”
  “My body knows how to rest. I trust it will come.” 

 

🧘♀️ Breathwork to Support Sleep 

Here are a few breath practices you can use to calm your nervous system before (or during) bedtime. You can also reference our stress and breathwork blog post for more about these strategies.  

1. 4-7-8 Breathing 

• Inhale 4 secs 

• Hold 7 secs 

• Exhale 8 secs
  Great for winding down the brain and body. 

 

2. Box Breathing (4-4-4-4) 

• Inhale 

• Hold 

• Exhale 

• Hold
  Perfect for resetting anxiety or overwhelm. 

 

3. Three-Part Breath 

• Inhale into belly → ribs → chest 

• Exhale: chest → ribs → belly
  Brings awareness to your body and breath. 

 

4. Diaphragmatic Breathing 

• Hand on chest, hand on belly 

• Breathe deep into the belly, barely moving the chest
  Soothing and deeply grounding. 

 

5. Alternate Nostril Breathing 

• Inhale left, exhale right 

• Inhale right, exhale left
  Balances energy and calms busy thoughts. 

 

💡 Final Takeaways 

Sleep in invisible illness is complex. It's affected by pain, inflammation, mental load, and dysregulation of the nervous system-not laziness or lack of effort. 

So here’s what matters: 

• Understand your body’s sleep needs (use the Sleep Triangle as a guide) 

• Create sleep safety, not just hygiene 

• Work with your brain and body, not against them 

• Support your nervous system with breath, rest, and compassion 

• Ask for help-there are professionals, tools and therapies that can support better sleep 

 

You are not alone in this. 

We see you, we believe you, and we know you’re doing your best. Sleep might not be easy, but with the right tools and insight, it can become more peaceful. 

Let’s make the invisible visible, together.

As always, sending love & spoons,
Raeya, COO of AHC