Imagine being told there may be something seriously wrong with you or your child, only to learn that you must wait weeks or months for answers. Within healthcare systems, waiting is often treated as a logistical problem. For patients and caregivers, it can be deeply distressing. The psychological burden of illness does not begin with diagnosis or treatment. For many people, it begins with the wait for both.
One of the Hardest Parts of Living with a Chronic Illness Is the Waiting
As a psychologist and lifelong congenital heart patient, I have spent much of my life waiting. From infancy, I have spent countless hours waiting by the phone for doctors to call, in outpatient clinics for appointments, in accident and emergency care, and for the results of tests, procedures, and surgeries. During hospital admissions, I have to wait for my slot on the surgical list, for cannulas and stitches to be removed, for pain relief, for discharge letters, and for permission to finally go home. Much of that waiting occurs when I am frightened, unwell, vulnerable, and uncertain about what might happen next. Even as a young child, for some healthcare procedures and surgeries, I had to wait without the soothing presence of loved ones. From a psychological perspective, waiting can be profoundly threatening.
The Nervous System Doesn’t Wait Calmly
People can often cope remarkably well with difficult news. What is typically much harder is uncertainty. Our brains are prediction machines, constantly scanning the environment for signs of safety or threat. When information is incomplete, the mind naturally attempts to fill in the gaps. What if the test result is bad? What if my condition is getting worse? What if they have forgotten about me? What if the surgery goes wrong?
Living in this state of chronic anticipation can activate the body’s threat response. The brain’s hypothalamus triggers a “fight-or-flight” response, prompting the adrenal glands to release adrenaline and cortisol. While these hormones are vital for immediate safety, chronic activation of this system by ongoing stressors can cause long-term health issues.
Uncertainty becomes a danger signal, triggering hypervigilance, worry, sleep disturbance, difficulty concentrating, and emotional distress. In short, we no longer feel psychologically safe. As many patients know, some of the hardest moments occur not during treatment itself, but while waiting to find out what their treatment will be.
When Time Allows Fear to Grow
Waiting gives you time to think. Impotent, time allows fear to grow. Without information, the mind often fills the gaps with imagined possibilities. For some, this may involve catastrophic scenarios. For others, it manifests as pacing around the house, repeatedly checking symptoms, endlessly searching online, or jumping every time the phone rings.
Not only do you need to manage any ongoing symptoms and physical limitations, but the impact of waiting ripples throughout life. You may postpone social plans in case a healthcare professional calls. You may struggle to focus on work or need to take extended time off on sick leave. You find yourself becoming more irritable, distracted, and emotionally exhausted. You wonder whether to contact your healthcare provider again, while worrying about being perceived as demanding or labelled a “difficult patient.” Major life decisions are often put on hold, the future feels suspended. Elevated stress can disrupt sleep, increase fatigue, create muscle tension, affect digestion, intensify symptom monitoring, and undermine mood and daily functioning.
Why Waiting Feels Like Powerlessness
One reason waiting is so difficult is that it often involves a profound loss of control. This loss of agency can heighten feelings of vulnerability and helplessness. Research consistently links powerlessness with increased anxiety, depression, trauma-related distress, and poorer psychological well-being. Patients frequently describe feeling invisible, forgotten, or unimportant, understandable human responses to uncertainty and loss of control.
When we feel vulnerable, we naturally seek reassurance and safety from others. A delayed appointment, unanswered voicemail, or missed call back may seem minor from an organisational perspective. Yet as a patient, it can carry a powerful emotional message. Compassionate communication, therefore, is not simply administration; it is the cornerstone of healthcare.
The emotional burden often extends across entire families. Throughout my own healthcare journey, parents, partners, children, and friends have waited alongside me. They too have lived with uncertainty, fear, and helplessness. For loved ones, there is often little they can do except wait and worry.
When Waiting Reawakens Old Wounds
Not everyone experiences waiting in the same way. Waiting can be particularly difficult for people with previous medical trauma, adverse childhood experiences, health anxiety, or histories of neglect, abandonment, or loss. For these individuals, a delayed phone call, postponed appointment, or delay in outpatient care may represent more than an administrative inconvenience. It can reactivate deeply held fears about safety, vulnerability, and whether support will be available when needed.
Understanding this can help healthcare professionals appreciate why seemingly small delays can evoke powerful emotional reactions and why training in responding compassionately is essential at every touch point.
A Psychologically Informed Approach to Waiting
The good news is that reducing the psychological burden of waiting does not always require vast resources. Consistent with a psychologically informed approach to healthcare, relatively small changes can make a meaningful difference:
- Explain what happens next, keep patients informed about delays, and offer realistic timelines.
- Provide a clear point of contact and maintain contact during prolonged waits.
- Communicate clearly with compassion at every stage of care.
- Avoid unnecessary secondary waiting lists and administrative hurdles.
- Acknowledge emotional distress and take into account the patient’s history and any medical trauma.
- Value patients’ time as a healthcare outcome in its own right.
- Allow a loved one to wait with patients.
For patients:
- Know your patient rights and be polite but assertive.
- Use an advocate, trusted friend, or a chaperone.
- Keep a record of healthcare interactions, noting appointment dates, phone calls, names of professionals, advice given, and next steps.
- Become an informed expert by learning about your condition and keep a concise summary of your health information, including key contact details, diagnosis and medications.
- Look after your well-being while you wait.
- Avoid excessive symptom-checking and internet searching.
- Seek support if waiting is affecting your mental health, from family, friends, peer support organisations, or professionals.
Psychologically informed healthcare requires us to recognise waiting as a significant healthcare experience rather than just empty time between clinical events. Across the healthcare journey, how patients experience waiting can profoundly shape well-being, recovery, trust, engagement with services, and future help-seeking behaviour. For many patients, the most difficult part of illness is not what happens in the consultation room. It is what happens while they wait outside it.
Adapted from Morton, L (2025). Beyond the Medical Gaze: Practicing Psychologically Informed Healthcare, Oxford University Press.
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