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.
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