Nasilele S: my experience of chronic pulmonary aspergillosis
This summary is based on Nasilele’s video, hosted on YouTube. It reflects her individual experience and is not medical advice.
After being treated for tuberculosis, Nasilele developed a severe cough that did not improve with antibiotics. A CT scan showed a fungal ball in her lung, and she received antifungal treatment for 18 months.
She was referred to the National Aspergillosis Centre in the UK, where her treatment plan was reviewed. The team recommended changing her antifungal medicine and surgery to remove the part of her lung containing the fungal ball. The video description reports that after surgery her fungal infection was cured and her symptoms improved dramatically.
Watch Nasilele’s video about living with CPA.
Nasilele S
Maggie M: seeking answers after Aspergillus was found
Maggie shared this account from Christchurch, New Zealand, in 2011. It describes her experience and beliefs at that time. It is not medical advice, and the events she describes do not establish what caused her illness.
I was working with young offenders when I became unwell. I believed that exposure to Aspergillus fumigatus through the air conditioning and heating in a new prison facility had triggered my symptoms. At the time, I did not know what was making me ill.
It took about 18 months to get answers. I was admitted to hospital around four months after the exposure I suspected, by which time I was very weak and having difficulty walking and coping with bright light. I had already had several courses of antibiotics.
Tests found Aspergillus in material from my sinuses and lungs. I felt that my concerns were not being taken seriously, so I continued to seek help. An allergist/immunologist tested me for several conditions, and I reacted strongly to Aspergillus fumigatus. After that, my other specialists began investigating further.
I had sinus surgery, but my symptoms continued. I felt there was still a problem deeper in my sinuses. A later scan found an area that needed further treatment, and I had another operation.
The illness affected many parts of my life. I experienced pain, fatigue and other symptoms, and I was unable to work for several years. My employer continued to pay my salary for four years, but that support eventually ended. My specialists later apologised for how things had gone.
I also tried complementary therapies, including acupuncture and lymphatic drainage. These were part of my personal approach to coping; they should not be taken as treatments for aspergillosis. I wanted to share my experience because the process of being unwell, seeking a diagnosis and trying to be heard was difficult.
Maggie M
Christchurch, New Zealand — 11 November 2011
Peter A: living with bronchiectasis and an aspergilloma
Peter wrote this account in November 2011 about his experience over several decades. It describes his individual treatment and the medical practice of that time; it is not current treatment advice.
I am 71 years old and have had lung problems since I was 15. My first experience was a spontaneous pneumothorax. I had several partial lung collapses, mostly on the right. When I was 18, olive oil was injected into the pleural cavity of both lungs. When I was about 50, I was told that this treatment had been used on several thousand patients but had never worked.
At about 28, while working in Hong Kong, I contracted tuberculosis (TB). It went undiagnosed for two years. By the time it was identified, I was very ill and coughing up blood almost continuously. I was travelling by ship to South Africa, where the ship’s doctor did not believe in antibiotics and advised me to eat liquorice and plenty of oranges.
When I arrived in South Africa, I was too ill to continue to Botswana and was admitted to hospital in Cape Town. This was New Year 1970. I stayed for five months before I was well enough to travel home.
Before my TB drug treatment was complete, I had a severe episode of coughing up blood. In August 1971, the upper lobe of my right lung was removed.
Years of relative stability
For many years afterwards I was reasonably well and fit, although my lung capacity made climbing above 8,000 feet in the Alps difficult.
In 1986 or 1987, I began to feel tired doing things that had previously been easy. In 1988, after I started coughing up blood, I saw a doctor and was sent to Queen’s Medical Centre in Nottingham. Tests showed bronchiectasis, and blood tests indicated that I had been exposed to Aspergillus.
Doctors suggested removing the enlarged middle lobe of my right lung. The operation was unsuccessful because of calcification of the pleura.
I then had treatment and management for bronchiectasis over several years. Different antibiotics were tried, but none made much difference. I was often tired, had little stamina and was not very fit. Attempts to exercise left me exhausted and sometimes unwell for days.
A CT scan in 1991 showed a small aspergilloma in my right lung, but it had disappeared by the time of a scan six months later.
After that, my condition was fairly stable, though my energy remained low. I had a productive cough and occasional episodes of coughing up blood. My medication was simple: a Serevent inhaler twice a day, and antibiotics when an infection needed treatment. Eventually, I saw my consultant once a year.
My condition worsens
In 2004, my cough worsened, my sputum developed a foul taste, and I became more prone to severe infections, some lasting several weeks. My chest physician in Nottingham tried azithromycin three times a week and other antibiotics, with little success.
In 2006, a CT scan and bronchoscopy found a large aspergilloma in a cavity in the upper part of my right lung. No treatment was given at that time.
A follow-up CT scan in January 2008 showed that the aspergilloma, then measuring 68 mm across, was close to the main pulmonary artery. I was told it might erode the artery and cause fatal bleeding. Since my unsuccessful operation in 1971, doctors had considered me inoperable.
I was prescribed itraconazole, but I was given instructions that did not suit me. I became very sick, lost my appetite and lost a lot of weight.
I searched online and found the Aspergillus website. I asked my GP to refer me to Wythenshawe, and I became a patient there in April 2008. The specialist team gave me a different view of my situation and started me on voriconazole. I had already stopped itraconazole because of how ill it made me feel.
I was also given tranexamic acid to keep in case of bleeding. After several months on voriconazole, I began to lose feeling in my toes, so the drug was stopped and I was switched to posaconazole.
Changes in the aspergilloma and episodes of bleeding
There was a three-month gap between stopping voriconazole and starting posaconazole. During that time, I became very unwell. My cough was severe, I produced a lot of sputum and mucus plugs, and sometimes I brought up as much as an eggcupful in one cough.
A CT scan in August 2009, after I had started posaconazole, showed that the aspergilloma had become smaller. I thought the material I had been coughing up might have been pieces of dead fungus. The aspergilloma continued to break down until January 2010. It then appeared to have gone, leaving a large cavity that was partly filled with fluid.
On 29 January 2010, I had a very severe episode of coughing up blood. It happened on the day of my appointment at Wythenshawe. My wife drove me from Nottingham with a bowl, towels and kitchen roll in the car. I was admitted for emergency embolisation. After another severe bleed, I had the procedure the following Monday. I coughed up about half a litre of blood in 20 minutes.
Several blood vessels were blocked through the femoral artery. The bleeding stopped only after the final vessel was treated through my upper arm. I was then told I could stop posaconazole. In May 2010, I was admitted to hospital for three weeks for treatment with intravenous amphotericin B and Tazocin.
My condition was fairly stable until November 2010, when I began coughing up blood again. The bleeds were moderate but prolonged, and happened about once a month. A CT scan showed a slight change in the shape of the cavity. In April 2011, my specialist decided I should restart posaconazole. He thought that stopping it might have allowed Aspergillus to grow again on the cavity lining and cause the bleeding to return.
The bleeding reduced, but I had another prolonged episode in August 2011. After five days, I phoned the hospital and was admitted for embolisation. Five vessels were blocked through the femoral artery. One vessel that could be reached through the arm was left untreated.
Since then, I have had one or two moderate bleeds. The team may need to consider treating the remaining vessel, but otherwise I do not feel too bad.
Peter A
November 2011
Pat P: recovering from Aspergillus infection in the sinuses
Pat shared this account around 2011. It describes her personal experience and treatment at that time; it is not current medical advice.
In 2006, I began having sinus problems. I started to lose the sight in my right eye, and a doctor became very concerned and set out to find the cause. An MRI showed fluid around my optic nerve that was pressing on it.
I was given high doses of prednisone to reduce the problem. A biopsy of my sinus tissue found Aspergillus fumigatus in my sphenoid sinus. I began antifungal treatment and stopped taking prednisone under my doctors’ care.
I was otherwise in excellent health. My doctors referred me to eye specialists, ENT doctors and surgeons at UC San Diego Medical Center.
They operated through my forehead to remove as much of the fungus as they could, and removed some damaged bone where the infection had spread from my sinus towards the optic nerve. I also had another operation through my nose to clear the sinuses.
All of this happened over about six weeks. My doctors were seriously concerned about how ill I was. I received intravenous amphotericin B, voriconazole and flucytosine. I also had 30 two-hour sessions in a hyperbaric chamber.
I received amphotericin B for about four weeks, flucytosine for about six months and voriconazole for a year. I had MRI scans every few months to check for signs that the fungus had returned.
I wrote this account about five years after the illness. At that point, I was still well. I hoped that sharing my experience might help someone else.
Pat P
Fallbrook, California, USA
Mike F: a diver’s experience of invasive aspergillosis
This summary is based on a report about Mike published in DIVER in November 2010. The original article includes historical medical and equipment-cleaning advice; this page focuses on Mike’s experience. It should not be used as current diving or medical guidance.
Mike had been a diver since his teens and was a fit 56-year-old when he became seriously ill in late 2008. After deep dives, he developed fever, shaking, a dry cough and severe breathlessness. He spent months in hospital, including time in intensive care, before the cause became clear.
Tests found Aspergillus in his sputum. Mike and his wife wondered whether his diving equipment could be involved. His equipment was later tested, and the report described fungal growth inside parts of his buoyancy compensator. Mike was diagnosed with invasive pulmonary aspergillosis and received antifungal treatment.
By the time he was interviewed, Mike’s illness had left him needing oxygen and greatly limited his mobility. He could no longer dive, something he described as a profound loss. He hoped his experience would encourage divers to take equipment cleaning and drying seriously.
The 2010 report raised the possibility of a link between Mike’s equipment and illness. It also quoted specialists who said this was an unusual case and cautioned against drawing broad conclusions. Mike’s story does not establish how common this risk is or show that contaminated equipment caused his infection.
For current equipment care, follow the manufacturer’s instructions. The Health and Safety Executive’s current information sheet advises thorough rinsing, complete drying and clean, dry storage; it also discusses periodic disinfection and choosing products compatible with the equipment.
Based on: Steve Weinman, “Think twice before breathing off a bag,” DIVER, November 2010.
Mick: living with chronic pulmonary aspergillosis and vision loss
This account describes Mick’s experience around 2009–2011. His diagnoses, medicines and treatment reflect that period and are not current medical advice.
I began having health problems towards the end of 2006. I had difficulty swallowing and eating, and I was losing weight. I was diagnosed with dysphagia and emphysema. At the time, I thought food was getting stuck in my oesophagus, and I wondered whether a fungal mass might have been involved. Doctors had diagnosed a hiatus hernia, but I did not know whether the two were connected.
After I stopped smoking, I began having repeated infections. Doctors investigated them with sputum and blood tests, and eventually identified organisms they could treat.
In October 2009, I was admitted to St Thomas’ Hospital with malnutrition and lung infections. I spent eight weeks in hospital, including time in an isolation ward, and also caught swine flu. I was very seriously ill and remember little of the first few weeks.
Doctors found Aspergillus in my lungs and started me on voriconazole. I began to eat again and slowly regained weight, although I was bringing up large amounts of thick sputum. I was discharged on 2 December, still needing a wheelchair.
Changes to my vision
I was taking several medicines for different infections. In March 2010, I began seeing a white square of light after taking voriconazole. By April, my vision had deteriorated quickly: I struggled to focus and distinguish colours.
A doctor arranged an urgent eye assessment and stopped my medicines. Eye specialists investigated the unusual and rapid loss of sight. The deterioration eventually stopped, but I was told that both optic nerves had been permanently damaged. I later registered as partially sighted.
Further lung problems
After my medicines were stopped, I became breathless and had palpitations. I was admitted to hospital again in May. My doctors told me that my left lung had been severely damaged and was no longer functioning, while my right lung was also badly scarred.
I started itraconazole. Later, after I began coughing up blood, I was referred to Manchester for specialist care. At the time I wrote this account, I was very breathless and concerned about fungal balls in my lungs.
Best wishes,
Mick
Margaret G: a long life with ABPA
Margaret wrote this account when she was 75. It looks back on decades of asthma, ABPA and other health problems, and on how diagnosis and care changed during her lifetime. The treatments and advice described are from that period, not current medical guidance.
I was often unwell as a child, with coughs and wheezing, though I was not diagnosed with asthma. In 1956, I had an episode of severe sinus congestion and brought up thick brown material. I recovered and thought little more of it at the time.
In 1962, my husband and I went to Nigeria to teach. The country and its people made a deep impression on us, but the years were also marked by political violence and civil war. During that period, I developed a worsening cough and became very ill. Local medical facilities were limited, and I was treated for asthma.
When we returned to the UK in 1968, I had a fever and a chest X-ray that raised concern about pneumonia, tuberculosis or cancer. A chest physician performed a bronchoscopy and removed brown material from my lungs. The laboratory identified aspergillosis. I was treated with positioning, physiotherapy and steroids. After weeks of coughing, I began bringing up thick plugs and could breathe more easily. I recovered and returned to family life.
Living with recurring symptoms
My consultant warned that aspergillosis could return. Over the following years, I had repeated coughs and episodes that I now understand may have been ABPA flare-ups. At the time, the condition was not well understood by many of the doctors I saw. I was often treated for infections, and the cause of my symptoms was not always recognised.
A second opinion at the Royal Brompton Hospital in 1990 changed things. Scans showed bronchiectasis and mucus plugs. I learned breathing and airway-clearance techniques and began long-term treatment. I felt that my illness was finally understood, and I was better able to get help when symptoms worsened.
In 1995, after several viral infections, I became very weak. During treatment, I injured both Achilles tendons. The following year, tests for a prolonged stomach illness led to another diagnosis: a rare leukaemia that affected my neutrophil count. I felt relatively well, so treatment for the leukaemia was postponed, but I learned to take feverish infections seriously and seek care promptly.
As I grew older, coughing became increasingly difficult to cope with. In 2010, a consultant prescribed itraconazole. I still coughed, but the episodes became less violent and prolonged.
Looking back
When I wrote this account, I was 75 and described my quality of life as good, despite fatigue, fragile skin, a croaky voice and poor sleep. I paced myself, walked when I could and valued the support of my husband and the care I had received from NHS staff.
I wondered whether different parts of my life—including illness, stress or exposure to bat droppings—might have contributed to my health problems, but I did not know the cause. I was grateful for the research and medical care that had helped me.
Margaret G
Peter K: choosing surgery for an aspergilloma
Peter shared this account in 2009, with an update in 2011. It describes his own experience and the decisions made with his doctors at that time. Treatment options and clinical practice may have changed since then.
A collapsed lung and a difficult recovery
In 1974, I was diagnosed with a large pneumothorax—a collapsed right lung. Attempts to reinflate it failed. After several weeks in hospital with a vacuum pump attached, I was transferred to Copenhagen University Hospital.
I had an operation, but complications followed. My blood seemed slow to clot, and I was re-operated on four times in one week. I received several blood transfusions and spent two weeks on a ventilator while the internal bleeding gradually stopped.
Recovery took a long time. I returned to work after three months, but it was more than a year before I felt physically back to normal.
I did not know that the surgery had left a small cavity in the upper lobe of my right lung. Apart from another spontaneous pneumothorax in my left lung—which was successfully treated with open-chest surgery in 1986—I had few symptoms for many years. I returned to exercise, travelled and worked long hours.
That changed in the summer of 2004.
A diagnosis of aspergilloma
I was working in California when I developed a cough and thick, greenish sputum. My GP and I thought it might be a seasonal allergy, but it became worse and the sputum gradually turned brown.
On Christmas Day, I coughed up fresh blood for the first time. My wife and I went to the local hospital. I had another episode while waiting to see a doctor, was sent home and told to see my GP the next morning. During the night, I coughed up blood twice more and returned to hospital.
I was admitted to an isolation room while doctors investigated possible tuberculosis. The tests were negative. I received intravenous antibiotics for several days and was then sent home.
After another episode in February 2005, I went straight to the respiratory specialist who had seen me in hospital. He suggested testing for Aspergillus. The test was positive, and I was diagnosed with an aspergilloma—a mass of fungal material in the cavity in my upper right lung. I was told that the cavity was likely related to my previous lung surgery.
I was 65 and had already been thinking about retiring or reducing my hours. My wife and I decided to leave California and return to Denmark. I continued working as a consultant and adviser, but with fewer hours and some international travel. I became an outpatient at a pulmonary infection department in Hillerød, north of Copenhagen.
I took antibiotics and itraconazole over a long period. By spring 2006, it seemed the infection had cleared, so I stopped the medication. Later that year, I began coughing up red sputum and restarted long-term itraconazole. I continued to have episodes of bleeding.
In autumn 2007, I travelled to Manchester to see Professor Denning. He explained that surgery would normally be considered, but the scarring from my earlier operations made it inadvisable in my case. If the bleeding became worse, he said, embolisation might be an option. My doctors in Hillerød had also discussed surgery but were concerned about the risks.
Despite continuing itraconazole, the episodes became more frequent. By late summer 2008, I was coughing up blood almost every night.
Weighing up an operation
I decided to consult a thoracic surgeon at the university hospital in Odense to understand how an operation might be done. He explained that he would consider keyhole surgery to remove the entire lobe containing the aspergilloma. He showed me a recording of a similar operation, with the patient’s permission.
After I returned to Hillerød, my respiratory specialist and I discussed the options. We concluded that, despite the risks, surgery was the best choice for me. My specialist referred me to Odense at my request.
The operation and recovery
I was admitted to hospital in Odense in November 2008. The operation took five hours. My blood-clotting problem returned, but the team used medicines that were available to control the bleeding. My family was told that the operation had been successful: the affected lobe had been removed without damage to the surrounding lung.
I later developed a serious bleeding ulcer in my duodenum, which was attributed to the stress of surgery. I lost a considerable amount of blood and needed a transfusion.
I was told that the cavity had developed a hard, almost bony wall, but that fungal filaments had penetrated it. The filaments were found to be dead, possibly because of the itraconazole. I was later told that the infection might have become invasive if surgery had been delayed.
Follow-up
Samples from the drains placed after surgery showed no Aspergillus. Blood tests a month later did show antibodies, which was disappointing. A CT scan showed nothing unexpected.
By March 2009, a further scan and blood tests were reassuring. My antibody level had almost returned to zero, and my doctor thought there was no fungus remaining in my chest after the operation.
Update: November 2011
It is now three years since my surgery. For the first two years, I had blood tests, X-rays and consultations every three months at Hillerød Hospital. These have now reduced to twice a year. My most recent tests showed no antibodies.
I am leading a normal life without restrictions. I continue to take part in outdoor activities and travel, mostly for pleasure and sometimes for work. I am increasingly confident that the infection has gone, and I feel lucky to have made the right decision for me.
I am grateful to the surgeon and doctors who cared for me. They were willing to explain the details and discuss the options, which helped me understand my situation and make my decision. I am also tremendously thankful to my wife, Gudrun, who supported me throughout.
Peter
Originally written in April 2009; update added in November 2011.
When symptoms remain difficult: keeping the conversation open
Ideas for clinicians when a patient has a diagnosis, but symptoms remain distressing or difficult to manage. This article grew out of an online meeting where people living with aspergillosis discussed how difficult it can be when symptoms remain troublesome and they feel their experience is not fully understood. The suggestions below draw on that patient discussion and published guidance; they are intended to support reflection, not to judge individual clinicians.
A patient may continue to struggle even when their diagnosis is known, investigations have been completed, or treatment has been tried. Sometimes there is no clearer explanation to offer, or no new treatment likely to make the symptoms go away.
That can be a difficult moment in a consultation. A patient may worry that they are not believed. A clinician may worry that discussing stress or mood will sound dismissive—or feel pressure to provide an answer that medicine does not yet have.
The conversation can still be useful. It can acknowledge the impact of symptoms, explain what is known and uncertain, and agree what happens next.
Start with the impact
Symptoms are only part of the patient’s experience. It also matters what they prevent, what they make harder, and what it costs the person to keep going.
A patient may still be working, socialising or caring for others, but need to rest afterwards or be unable to repeat the activity the following day. They may look well in the consultation while describing symptoms that disrupt sleep, concentration, relationships or daily routines.
Questions such as “What is hardest to manage at the moment?”, “What happens after you’ve pushed through?” or “What would you most like me to understand?” can help bring that impact into the conversation.
Acknowledging the impact does not require certainty about its cause. It shows the patient that their account has been heard.
Explain what is known and what remains uncertain
When tests do not reveal a new cause, patients may need a clear explanation of what has been considered, what the results show, and what they cannot tell us. Saying “I don’t have a better explanation today” can be more reassuring than offering a tentative explanation as if it were certain.
“I can see these symptoms are still affecting you. We haven’t found a new explanation in the tests we’ve done. That doesn’t mean I think nothing is wrong. Let’s talk about what we can do now and what should prompt us to review things.”
The wording will depend on the patient and the clinical situation. The aim is to make sure uncertainty does not sound like disbelief.
The General Medical Council’s Good medical practice asks doctors to listen, acknowledge patients’ concerns and experience, explain uncertainty, and encourage open dialogue about health. It also recognises the lasting impact a medical professional’s approach can have on a patient. NICE guidance on patient experience in adult NHS services similarly emphasises involving people in discussions about their care and respecting their needs and preferences.
Discuss mind–body effects without blame
Stress, sleep, mood and the demands of living with a long-term condition may affect how symptoms are experienced and managed. Physical symptoms can also cause stress, disrupt sleep and affect mood. These influences can interact.
Raising them need not suggest that symptoms are imaginary or “all in the mind.” A clinician might ask permission and explain why the topic could be relevant:
“Would it be okay if we also talked about sleep, stress and mood? These can interact with physical symptoms, and understanding that may give us more ways to support you.”
Patients may welcome this conversation, feel uncertain about it, or have previously felt dismissed when psychological factors were raised. Making space for their response—and continuing to consider their physical health—can help preserve trust.
Agree what happens next
Even when there is no new treatment to offer, the appointment can end with a shared plan. Depending on the situation, that might include:
- practical support for managing symptoms and their impact
- whether treatment, medication or other support should be reviewed
- what changes the patient should report or seek help for
- when to review the situation
- who the patient should contact if things change
A plan does not have to promise that symptoms will resolve. It gives both people a way to keep responding if they do not.
What does the research say about communication?
Research on persistent physical symptoms and symptoms without a complete medical explanation is relevant to these conversations, but it does not map perfectly onto every patient with an established diagnosis. It should inform the discussion, not define the person.
A 2022 systematic review examined communication interventions for symptoms often described in the literature as “medically unexplained.” It found the evidence was mixed and limited by differences in the interventions and the quality of studies. The authors recommended further development of communication approaches before more trials are undertaken. This means a conversation aid such as a patient-completed appointment note may be worth developing and evaluating, but should not be presented as a proven intervention. Read the review.
In a qualitative study, patients identified acknowledgement and validation, along with specific recommendations, as helpful parts of communication about persistent symptoms. Read the study. A clinical review by Husain and Chalder discusses assessment and management of persistent physical symptoms and emphasises that symptoms are real and can be distressing. Read the review.
Keep listening
Clinicians work within real limits, including short appointments, complex records and uncertainty about what might help. Patients may also find it hard to describe fluctuating or invisible symptoms, particularly if they have felt dismissed before.
Listening carefully, explaining decisions and making the next step clear cannot guarantee agreement or solve every problem. But they can help keep the relationship intact when there is no easy answer. The aim is for the patient to leave knowing that their concerns have been taken seriously, what remains uncertain, and what will happen next.
This article offers general communication ideas, not clinical guidance. It draws on patient discussion and published resources; it should be reviewed by a clinician before publication.
Further reading
- GMC: Good medical practice — Patients, partnership and communication
- NICE: Patient experience in adult NHS services
- Husain & Chalder (2021): Medically unexplained symptoms: assessment and management
- Byrne et al. (2022): Communication interventions for medically unexplained symptom conditions in general practice
- Anastasides et al. (2019): Helpful ways providers can communicate about persistent medically unexplained physical symptoms
For patients, families and friends: Read our guide to
talking to friends and family about aspergillosis,
which explores how fluctuating symptoms can affect everyday life and what support can help.
Thursday Sessions: When symptoms aren’t believed: being heard when tests don’t explain everything
Reflections from patient discussions about living with chronic illness
In a recent patient discussion, one person recalled being told by a specialist that their symptoms were psychosomatic. Their GP listened, supported them and helped them continue seeking an explanation. The specialist’s comment stayed with them. It made it harder to speak openly about symptoms and left them wondering whether other clinicians would also dismiss what they were experiencing. In time, they received treatment for aspergillosis.
Their experience prompted others in the group to share how difficult it can be when symptoms are not obvious to the people around you. Someone may manage a social event, get through a work meeting or care for a family member, yet feel exhausted or unwell afterwards. To other people, they may look much the same as usual. The effort it took—and the recovery that followed—may be invisible.
Several people recognised the feeling of not being believed. They spoke about trying to describe symptoms to clinicians, family or colleagues and feeling that their experience was doubted or minimised. For some, the difficulty was not only coping with symptoms. It was also having to explain, repeatedly, why those symptoms mattered.
When there isn’t an immediate explanation
Symptoms do not always fit neatly into a test result or a clear diagnosis. Investigations may take time, results may be inconclusive, and different health problems can overlap. A clinician may not know the cause straight away.
That uncertainty can be hard for everyone. But “we haven’t found an explanation yet” is not the same as “nothing is wrong.” A person can be genuinely unwell even when the reason is not yet clear.
The recollection is one person’s experience, not a judgement about every clinician or every use of the word psychosomatic. It shows how a label can be heard, though: not as one possible part of a careful discussion, but as a conclusion that closes the door on further listening.
Mind and body are connected—but symptoms still deserve attention
Stress, anxiety and low mood can affect the body and can make symptoms harder to manage. Physical illness can also affect emotional wellbeing. These things can be true at the same time.
Recognising that connection should not mean assuming that symptoms are “just stress” or that a person’s account is unreliable. A psychological explanation should not be used to dismiss symptoms without taking the person’s concerns seriously and considering what else may need attention. A clinician can acknowledge the effects of stress while still asking what has changed, what investigations are appropriate and what support might help.
Being listened to does not require a clinician to have an immediate answer. It means being treated with respect while the possibilities are considered and the next steps are discussed.
The cost of appearing well
People in the discussion described how much can be hidden from view. A person might manage a visit or a meeting, then find their energy gone. They may look fine while struggling to concentrate, losing their train of thought, or trying to conceal the effects of illness or medication. A short outing can involve planning where to sit, how far to walk and how to get home.
A good day can make it tempting to do everything at once—to take the stairs, stay longer or catch up on what has been postponed. But a person’s ability to do something once does not show how often they can do it, or what it costs them afterwards.
This can be difficult for family members and colleagues to understand, especially if they remember the person before illness changed their capacity. It can also be difficult for the person who is ill: asking for help, changing a plan or needing to rest may feel like letting others down.
What helps people feel heard?
There is no perfect phrase that guarantees understanding. But patients and clinicians can make space for a clearer conversation.
A patient might find it useful to explain:
- what has changed and when it began
- how symptoms affect daily activities, work or sleep
- whether the difficulty varies over time
- what happens after exertion or a demanding day
- what they are most worried about, and what help they are asking for
It may help to write down a few key points before an appointment, especially if concentration or memory is affected. If someone feels their concern has not been understood, they could try saying: “I understand that we don’t have an explanation yet, but these symptoms are affecting my life. Can we talk about what happens next?”
Family members and colleagues do not need to diagnose or solve the problem. Listening without immediately challenging the account, asking what would make the day easier, and accepting that someone may need to stop or change plans can make a real difference.
The importance of being believed
The patient discussion did not resolve why every person had experienced their symptoms, or what should happen in each individual case. What it offered was recognition: people understood how exhausting it can be to live with symptoms and also try to convince others that they are real.
Being believed does not mean that every explanation is already known. It means that a person’s experience is taken seriously, uncertainty is acknowledged, and the conversation remains open.
This article draws on anonymised recollections from patient discussions. It reflects shared experiences and is not a clinical account of any individual’s care.
Further information
- Information and support for people affected by aspergillosis
- NAC online meetings and community support
- How to contact or register with a GP
- Comments for clincians
For healthcare professionals: Read our companion article on
keeping the conversation open when symptoms remain difficult.