GAtherton

Contents

1. Before you begin: you are not imagining it
2. Why we wrote this guide
3. Why does my breathing feel worse when my scan has not changed?
4. Why does the brain matter if my lungs are the problem?
5. Can emotions really change my breathing?
6. How do the brain, stress system and immune system communicate?
7. Can stress make aspergillosis worse?
8. Why do sleep and breathing affect each other?
9. Where do medicines fit into the brain–lung connection?
10. When coughing becomes socially difficult
11. What if I also have bronchiectasis, asthma or sinusitis?
12. What can help?
13. What’s new?
14. Help us improve this Knowledge Hub

Why we wrote this guide

Over many years at the National Aspergillosis Centre, we have listened to many people living with aspergillosis.

Again and again, we hear similar questions.

“Why do I feel much worse today when my scan hasn’t changed?”

“Why does poor sleep affect my breathing so much?”

“Can stress make my symptoms worse?”

“If my emotions affect my breathing, does that mean my illness isn’t real?”

These are important questions. Unfortunately, they can be difficult to answer fully during a busy clinic appointment.

This guide has been written to provide the explanation many people tell us they never had.

It brings together modern respiratory medicine, neuroscience, immunology, pulmonary rehabilitation and the lived experience of people with aspergillosis.

Our aim is not simply to explain the science. Our aim is to help you understand your own experience.

A false choice

Many people living with chronic illness feel they have been offered two very different explanations for their symptoms.

Either the symptoms are caused by the lungs, or the symptoms are caused by anxiety.

Modern medicine increasingly recognises that this is a false choice.

The lungs are real. The brain is real. The nervous system is real. The immune system is real. Hormones are real.

Every one of these systems communicates continuously with the others. When we understand that partnership, many experiences that once seemed confusing begin to make sense.

More than just the lungs

Most of us think breathing happens entirely inside the lungs. In reality, every breath depends on an extraordinary partnership between many different parts of the body.

Scientists often describe this constant communication as the brain–lung axis.

Understanding how this partnership works has transformed the way respiratory specialists think about chronic breathlessness.

If you remember only one thing from this opening section, remember this:

Your illness is real. Your symptoms are real. The science that explains the connection between the brain and lungs is real too.

Why Does My Breathing Feel Worse When My Scan Hasn’t Changed?

This is probably one of the most common questions asked by people living with chronic lung disease.

“My doctor says my CT scan looks stable, so why do I feel so much worse?”

It is an excellent question. It is also one that causes enormous frustration.

Many people begin wondering whether they are imagining their symptoms or whether something has been missed.

Fortunately, modern respiratory medicine has a much better explanation.

The first thing to understand

A CT scan is an extraordinarily useful investigation. It allows doctors to see inflammation, cavities, bronchiectasis, scarring and many other important changes inside the lungs.

But a scan has one important limitation.

It shows what your lungs look like.

It cannot show what breathing feels like.

Those are two different things.

Structure versus function

A useful way to think about this is to separate structure from function.

Your medical team needs both kinds of information. One does not replace the other.

Breathlessness is an experience

The American Thoracic Society defines breathlessness, also called dyspnoea, as:

That definition is important. It tells us that breathlessness is something that is experienced.

The lungs send information. The brain turns that information into the experience of breathing.

An orchestra, not a solo instrument

Imagine listening to an orchestra. You do not hear only the violins. You hear the combined sound of strings, woodwind, brass and percussion.

Breathing works in much the same way. What you experience is produced by many different systems working together.

No single instrument produces the whole performance.

What your scan cannot see

Your CT scan cannot show:

• how well you slept
• whether your breathing muscles are tired
• whether you recently recovered from a viral infection
• whether you feel anxious about another haemoptysis
• whether today’s humidity is making your chest feel tight
• whether your body is still recovering from yesterday’s activity
• how much mental effort breathing requires today.

All of these may influence how breathing feels. None of them mean your illness is imaginary.

Why Does the Brain Matter If My Lungs Are the Problem?

This question worries many people.

“If my doctor starts talking about my brain, are they saying my illness isn’t real?”

The answer is simple. No.

Talking about the brain is not changing the diagnosis. It is explaining how breathing works.

Your lungs cannot create the sensation of breathlessness on their own, just as your ears cannot create music on their own, or your eyes cannot create vision on their own.

Every one of these experiences depends on the brain interpreting information coming from the body. Breathing is no different.

Your brain is your body’s prediction machine

Most of us imagine the brain as a computer that simply receives information. Modern neuroscience paints a much more interesting picture.

The brain is constantly trying to predict what is about to happen.

Every second it asks questions such as:

• Am I safe?
• Am I getting enough oxygen?
• Should I breathe faster?
• How hard are my breathing muscles working?
• Does this feel familiar?

It compares what it expects to happen with what is actually happening.

If everything matches, breathing usually fades into the background. If something unexpected happens, breathing suddenly becomes the centre of attention.

This is one reason healthy people rarely notice their breathing, while people living with chronic lung disease may think about it many times each day.

The smoke alarm inside your brain

A smoke alarm has one job: to detect danger. It would rather ring unnecessarily than miss a real fire.

Your brain works in much the same way.

If you have experienced:

• a severe asthma attack
• haemoptysis
• being unable to catch your breath
• an emergency admission to hospital
• months of unexplained symptoms before diagnosis

your brain learns something very important.

“Breathing can sometimes become dangerous.”

Once that lesson has been learned, your brain naturally pays much closer attention to breathing than it did before.

This is not a fault. It is exactly what evolution intended. Your brain is trying to protect you.

The Brain–Lung Axis

Scientists describe the close communication between the brain and lungs as the brain–lung axis.

This communication works in both directions.

Every breath is the result of this continuous conversation.

Why this matters if you have aspergillosis

If you understand that breathing is created by a partnership between the lungs and brain, several confusing experiences suddenly make much more sense.

• Why one day can feel much harder than another.
• Why sleep affects breathing.
• Why fatigue affects breathing.
• Why confidence affects breathing.
• Why pulmonary rehabilitation improves symptoms even when scans remain unchanged.
• Why frightening respiratory events can continue to affect confidence long after the lungs have recovered.

None of these observations suggest your illness is psychological.

They demonstrate how remarkably sophisticated the breathing system really is.

Can Emotions Really Change My Breathing?

Many people living with aspergillosis are reluctant to ask this question.

Some worry that even mentioning stress or emotions will mean their symptoms are no longer taken seriously. Others have experienced exactly that in the past.

Modern respiratory medicine takes a very different view.

It recognises two equally important facts.

• Your lung disease is real.
• Your emotional state can influence how that disease is experienced.

These statements are not contradictory. They describe how the human body normally works.

Every emotion has a physical effect

Think about the last time you were startled. Before you had time to think, your body had already responded.

• Your heart rate increased.
• Your breathing became faster.
• Your muscles tightened.
• Your mouth became dry.
• Your attention narrowed onto the potential danger.

You did not choose any of those reactions. They happened automatically.

This is because emotions are not separate from the body. They are produced by the body and immediately affect the body’s physiology.

Breathing is especially sensitive

Unlike many other organs, the breathing system has to respond continuously to both physical demands and emotional demands.

These changes happen in everyone.

People with chronic lung disease often notice them more because their breathing system is already working harder.

Why frightening experiences matter

Imagine two people climbing exactly the same flight of stairs.

One has never experienced serious breathing problems. The other has previously been admitted to hospital with severe breathlessness.

Their lungs may be working equally hard. But their brains interpret those signals differently.

The first person thinks:

“I’m out of breath because I climbed the stairs.”

The second person may immediately wonder:

“Is something going wrong again?”

Neither response is irrational. They reflect different life experiences.

This is one reason why previous severe respiratory events can continue to influence confidence long after recovery.

The vicious circle of fear

Fear itself does not damage the lungs. However, fear can unintentionally make breathing feel more difficult.

Breathlessness
       ↓
Concern
       ↓
Breathing becomes faster
       ↓
Chest muscles tighten
       ↓
Breathing feels harder
       ↓
More concern

This is not imaginary. Every stage involves genuine physical changes.

The encouraging news is that this cycle can also be interrupted.

Understanding
       ↓
Greater confidence
       ↓
Calmer breathing
       ↓
More efficient breathing
       ↓
Activity feels easier
       ↓
Confidence grows

This does not remove aspergillosis. It changes how effectively the whole breathing system works together.

Emotions do not make aspergillosis imaginary.

They are one of the many biological systems that influence how living with aspergillosis feels from day to day.

How Do the Brain, Stress System and Immune System Communicate?

The brain and immune system are not separate departments. They exchange information continuously through nerves, hormones and chemical messengers.

The scientific field that studies these connections is called psychoneuroimmunology:

• psycho refers to thoughts, emotions and behaviour
• neuro refers to the brain and nervous system
• immunology refers to the immune system

The name may sound as though it is about psychology alone. It is not. It describes measurable biological communication between the nervous, hormonal and immune systems.

What happens during a stress response?

When the brain detects a possible threat, it activates two closely connected systems.

This response is useful when danger is brief. It prepares the body to act and then, normally, settles again.

Long-lasting illness can be different. Symptoms, uncertainty, poor sleep, repeated hospital visits and frightening events may keep the body’s alarm systems more active than usual. Researchers call the accumulated strain of repeated adaptation allostatic load.

Does stress simply weaken the immune system?

No. That common phrase is too simple.

Stress signals can increase some immune responses and reduce or redirect others. The effect depends on how intense and prolonged the stress is, what else is happening in the body, which part of the immune system is measured and the individual person.

Human studies have shown that sustained psychological stress can be associated with greater susceptibility to some viral respiratory infections. Sleep disruption can also alter inflammatory and immune signalling. However, these findings cannot simply be transferred to every disease or every patient.

Why this matters: the brain–immune connection is real, but it must never be used to blame someone for becoming ill or for failing to recover.

Can Stress Make Aspergillosis Worse?

This question needs a careful answer.

There is currently not enough direct research to say that psychological stress makes the fungus grow, causes aspergillosis to progress or produces a relapse. We should not claim more than the evidence shows.

Stress can nevertheless affect the experience and management of illness through several genuine biological and practical routes:

• breathing may become faster or less regular
• heart rate and blood pressure may rise temporarily
• chest and shoulder muscles may tighten
• sleep may become more fragmented
• fatigue and pain may become harder to tolerate
• attention may become fixed on breathing or coughing
• activity may be avoided through fear of breathlessness
• complex treatments and airway-clearance routines may become harder to manage

These effects can make a difficult day feel substantially worse even when the underlying lung disease has not suddenly changed.

The reverse is also important. Worsening respiratory symptoms can create stress. The relationship therefore runs in both directions:

Symptoms can increase stress, and stress can amplify the experience and consequences of symptoms.

Why Do Sleep and Breathing Affect Each Other?

One reader told us that understanding the importance of sleep was especially helpful. Sleep deserves its own section because the relationship again works in both directions.

Lung symptoms can disturb sleep

Cough, sputum, wheeze, breathlessness, reflux, pain, medicines and worry can all interrupt sleep. People may also wake to clear mucus, use an inhaler or change position.

Research in adults with stable bronchiectasis found sleep disturbance to be common and associated with poorer health-related quality of life. That does not prove that bronchiectasis is the only cause of poor sleep, but it confirms that the problem deserves attention rather than being accepted as an inevitable inconvenience.

Poor sleep can make the next day harder

After disrupted sleep:

• physical and mental energy are reduced
• concentration and memory may be poorer
• the brain may have less capacity to filter or tolerate uncomfortable sensations
• breathlessness and coughing may feel more intrusive
• emotional resilience may be lower
• motivation for exercise, airway clearance and treatment routines may fall

This can produce another self-reinforcing loop:

Night-time symptoms → broken sleep → fatigue and greater symptom burden → reduced activity or coping capacity → a more difficult night.

Could it be a sleep disorder?

Not every sleep problem is caused by aspergillosis. Loud snoring, witnessed pauses in breathing, gasping or choking during sleep, morning headaches and marked daytime sleepiness can be features of obstructive sleep apnoea. These symptoms should be discussed with a GP or respiratory team because sleep apnoea can be assessed and treated.

Sleep is not a cure for aspergillosis. Improving a treatable sleep problem may, however, improve energy, concentration, mood and the ability to manage respiratory illness.

Where Do Medicines Fit into the Brain–Lung Connection?

A reader asked about “the effect of pharmaceuticals within the loop”. This is an important question because medicines can influence several parts of the system at once.

Azole antifungals can interact with many other medicines, sometimes increasing or decreasing drug levels. A medication review by a pharmacist or specialist team is therefore part of good aspergillosis care.

When Coughing Becomes Socially Difficult

One reader described an experience that is rarely captured by scans or lung-function tests.

They noticed that meeting and talking with other people naturally changed their breathing. Deeper breaths, speaking and emotional excitement seemed to mobilise congestion, followed by a coughing episode. The physical need to cough then created anxiety about coughing in front of others.

This illustrates how several real processes can overlap:

• talking, laughing, posture and deeper breathing change airflow
• changing airflow may move secretions and trigger a physical cough
• a public coughing episode draws attention and may feel embarrassing
• anticipating another episode can increase alertness and alter breathing
• fear of embarrassment may lead someone to avoid social contact

Research has not established exactly how each part of this sequence operates in aspergillosis, so we should not pretend that one explanation fits everyone. The cough and mucus are nevertheless physical, while the social anxiety is also real. Each can intensify the other.

What may help?

• Where practical, complete prescribed airway clearance before an important social activity.
• Keep water, tissues and any prescribed reliever treatment accessible.
• Choose seating that makes it easy to step out briefly without feeling trapped.
• Use breathing-control techniques taught by a respiratory physiotherapist.
• Explain briefly to trusted people that coughing is part of the lung condition and is not necessarily infectious.
• If fear of coughing is causing isolation, tell the clinical team; pulmonary rehabilitation, physiotherapy or psychological support may help rebuild confidence.

The goal is not to suppress a cough that is needed to clear mucus. It is to make the episode safer, more manageable and less socially limiting.

What If I Also Have Bronchiectasis, Asthma or Sinusitis?

Another reader asked us to recognise the respiratory conditions that often exist alongside aspergillosis. The brain does not receive neatly labelled messages from one diagnosis at a time. It receives a combined stream of information from the whole respiratory system.

This helps explain why treating one part of the problem may bring a real improvement without making every symptom disappear. It also explains why coordinated care and a clear treatment plan matter when several diagnoses overlap.

What Can Help?

Understanding the brain–lung connection should lead to more options, not fewer. It adds supportive treatments to appropriate medical care; it does not replace that care.

1. Learn your own patterns

A short symptom diary can reveal links between sleep, activity, medicines, airway clearance, stressful events and breathing. Look for patterns rather than blaming yourself for individual difficult days.

2. Treat the lungs properly

Antifungals, asthma treatment, infection management, airway clearance and monitoring remain central where clinically indicated. A brain–lung explanation must never become a reason to undertreat physical disease.

3. Rebuild confidence gradually

Pulmonary rehabilitation and appropriately paced activity can help the brain relearn that breathlessness during safe activity does not always signal immediate danger. Progress may be slow and uneven.

4. Use breathing control appropriately

Techniques taught by a respiratory physiotherapist can help some people recover from an episode of difficult breathing or manage the urge to breathe rapidly. Airway clearance and breathing control have different purposes, so personalised instruction is valuable.

5. Investigate persistent sleep problems

Do not assume that severe daytime sleepiness, repeated waking, loud snoring or night-time breathing difficulty is simply part of aspergillosis. Discuss it with a healthcare professional.

6. Review medicines

Ask whether the timing, dose, side effects or interactions of medicines could be affecting sleep, mood, energy, heart rate or breathing. This is particularly important when azole antifungals, steroids or several long-term medicines are used together.

7. Create a plan for genuine deterioration

Knowing what is normal for you—and when to seek help—can reduce uncertainty. Ask your clinical team what changes should trigger routine advice, urgent assessment or emergency help.

What the evidence can—and cannot—tell us

If you remember only one message from this update, remember this:

Good care does not ask whether symptoms come from the lungs or the brain. It asks how the lungs, brain, nervous system, immune system, sleep, medicines and lived experience are interacting—and what can safely be improved.

What’s New?

This Knowledge Hub is updated as new evidence becomes available and in response to questions from readers.

Version 0.2 – August 2026

• Added the immune system and psychoneuroimmunology.
• Explained stress hormones, inflammation and the limits of current evidence.
• Added a detailed section on sleep and breathing.
• Explained how medicines can affect different parts of the brain–lung system.
• Added the patient-identified cycle linking social activity, mucus, coughing and anxiety.
• Recognised the combined effects of aspergillosis, bronchiectasis, asthma and chronic sinusitis.
• Added practical steps and clearer safety advice.

Version 0.1 – July 2026

• Initial publication.
• Introduced the brain–lung connection.
• Explained why breathlessness is more than lung function alone.
• Explored how previous experiences and emotions can influence breathing.

Next planned update

• Living with uncertainty and recognising meaningful change.
• More detail on pulmonary rehabilitation and rebuilding confidence.
• Further patient experiences and questions.

Help Shape Future Editions

Every month we review this Knowledge Hub.

Some improvements come from newly published scientific research.

Others come directly from the questions and experiences shared by people living with aspergillosis, their families and healthcare professionals.

Many of the most valuable pages on aspergillosis.org have started with a single patient question.

If there was something you expected to find but didn’t…

If something wasn’t explained clearly…

If your own experience has been different…

Or if there is a question you think every patient should have answered…

Please tell us.

Your feedback will help shape future editions of this Knowledge Hub and may inspire entirely new patient resources.

📝 Share your feedback (2–3 minutes)

Thank you for helping us build one of the world’s most comprehensive patient education resources on aspergillosis.

This Knowledge Hub has evolved thanks to our readers

Future updates will be listed here so you can see how this resource has grown over time.

Further reading and references

1. American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea
2. American Thoracic Society PDF: Mechanisms, Assessment, and Management of Dyspnea
3. American Thoracic Society patient information: Pulmonary Rehabilitation
4. British Thoracic Society: Pulmonary Rehabilitation resources
5. Global Initiative for Asthma (GINA)
6. Global Initiative for Chronic Obstructive Lung Disease (GOLD)
7. PubMed search: brain imaging and dyspnoea reviews
8. PubMed search: quality of life in chronic pulmonary aspergillosis
9. Aspergillosis Patients & Carers website
10. Cohen S, Tyrrell DAJ, Smith AP. Psychological Stress and Susceptibility to the Common Cold. New England Journal of Medicine. 1991.
11. McEwen BS. Stress, adaptation, and disease: allostasis and allostatic load. Annals of the New York Academy of Sciences. 1998.
12. Irwin MR. Why sleep is important for health: a psychoneuroimmunology perspective. Annual Review of Psychology. 2015.
13. Gao YH et al. Sleep disturbances and health-related quality of life in adults with steady-state bronchiectasis. PLoS ONE. 2014.
14. Sigurgeirsdottir J et al. COPD patients’ experiences, self-reported needs, and needs-driven strategies to cope with self-management. International Journal of Chronic Obstructive Pulmonary Disease. 2019.
15. NHS: Sleep apnoea—symptoms, assessment and treatment.
16. NHS: Side effects of prednisolone tablets and liquid.

Suggested citation: National Aspergillosis Centre. Living with Aspergillosis: Understanding the Brain–Lung Connection. Aspergillosis.org. Version 0.2. August 2026.