CPTSD and Progressive Illness

The Invisible Wounds

By Tracy Guy, BNurs, GradDipCounsel & Alison Rose-Hughes, BNurs.

Complex Post-Traumatic Stress Disorder (CPTSD) is often associated with chronic, repeated trauma. Unlike PTSD, which can stem from a single incident, CPTSD develops through prolonged exposure to traumatic events, often in environments where escape feels impossible. While this diagnosis is frequently linked to abuse or war, a lesser recognised but equally devastating source is the prolonged trauma of progressive illnesses like cancer, especially when it recurs over the years, across multiple loved ones.

Progressive illness doesn’t just affect the body; it erodes the emotional, mental, and relational foundations of both the patient and those around them. In cases where remission is followed by relapse, and where multiple family members battle life-limiting conditions over decades, the psychological toll can be profound, leaving deep, complex trauma in its wake.

The Patient’s Perspective: Grieving While Still Alive

Living with a progressive illness such as cancer is not a single traumatic event; it is a series of events often spanning months, if not years. Patients and their loved ones suffer the initial shock of diagnosis. Then there’s treatment, uncertainty, side effects, remission, hope, relapse, and the ultimate decline to the end of life. Each stage demands a reprocessing of reality. Patients grieve their autonomy, their future, and their identity. As one nurse described: “I see them grieving the life they thought they’d have. I try to give them space to talk about it, to cry, to ask ‘why me?’” This grieving isn’t linear; it reactivates with every scan, every return of symptoms, every new round of treatment, and every appointment. CPTSD symptoms like hypervigilance, emotional numbness, avoidance, and deep despair are often present but are misinterpreted as mere depression or anxiety. Yet, what they’re experiencing is trauma in real time. Patients like Brian, who was gradually debilitated by Motor Neurone Disease (MND), illustrate this clearly. His haunting words, “It’s like I only matter when I’m dying, not while I’m still living,” reflect not only physical decline but emotional invisibility, a key driver of complex trauma.

The Family’s Trauma: Secondary Victims, Primary Sufferers

Family members, especially long-term caregivers, face their own psychological war. Watching a loved one repeatedly fight, improve, relapse, and then ultimately decline induces what could be called “trauma fatigue.” Each remission is a breath of hope; each recurrence is a suffocating blow, together forming a relentless, re-traumatising cycle that dismantles the self and leaves behind irreversible psychic wounds. Over time, family members may develop CPTSD themselves, carrying unresolved grief, guilt, helplessness, and anticipatory loss. As one nurse reflected, “Families suffer just as much as the patient. They look for answers, guidance, and sometimes even comfort. I often find myself balancing the clinical aspects of care with simply being someone who listens to everyone.” For spouses or adult children who assume caregiving roles, the trauma compounds. Their roles shift: the partner becomes a nurse, the daughter becomes an advocate, and the son becomes a carer. And when the medical system fails to provide coordinated support, as it did for Lisa, who cared for her gravely ill husband with no training or dedicated point of contact, the weight of caregiving becomes not just physical, but deeply traumatic.

A Legacy of Illness: Generational Trauma

Now imagine this experience not as a one-time tragedy, but as a family legacy. When several relatives face life-limiting illnesses over decades, each illness unfolding slowly and painfully, the trauma is no longer contained. It becomes embedded in the family’s psyche. Children raised in households where cancer or other progressive illnesses are a recurring presence may develop anxiety, severe depression, and emotional dysregulation. Adult family members may avoid medical care for themselves out of fear or denial, and some may live with chronic hypervigilance, bracing for the next call, the next biopsy result, the next loss. This prolonged exposure to death and dying, especially in close quarters, can mirror the type of chronic trauma characteristic of CPTSD. The debilitating nature of CPTSD can manifest in the surviving family members as persistent emotional numbness, difficulty trusting others, intense grief reactions, and an ongoing sense of threat, even long after their loved one has passed. Triggers may include healthcare and clinical settings, billboards for cancer research and donations, and movies of terminal illness (many of which do not provide trigger warnings), among others. And yet, support systems and the medical community rarely acknowledge the impact on the wider family network.

The Nurse’s Insight: Bearing Witness to Unseen Wounds

Nurses are often the silent observers of this slow, emotional unravelling. They see patients’ physical decline, but also their spiritual and emotional pain. They are present when the diagnosis is given, when the world splits into “before” and “after.” They support patients in their grief, help them maintain dignity, and bear witness when the family begins to fracture under the emotional strain. One nurse shared: “Nursing goes beyond administering meds or checking vitals. It’s sitting at the bedside holding a hand or simply being there in silence when there are no more words.” But even the most compassionate nurse cannot fill the systemic gaps in care. From diagnosis, through progression, and on to death, there is often no coordinated emotional support for patients or families. This failure leaves everyone, patients, caregivers, and nurses, facing immense psychological burdens with minimal resources.

Closing the Gap: A Call for Systemic Change

The emotional trauma of progressive illness does not wait for palliative care to begin. It starts at diagnosis and builds with each remission, each relapse, and each unmet need. To address this, we must:

• Recognise CPTSD as a legitimate consequence of prolonged illness and caregiving.

• Integrate psychological support from the moment of diagnosis, not just at end-of-life.

• Provide structured care plans that include emotional, financial, and practical support for end-of-life planning, a source of major anxiety.

• Offer consistent points of contact for families, case managers, social workers, and counsellors.

• Support nurses through reflective practice, mental health services, and manageable workloads.

As the nurse said of Brian and Lisa: “Their story is a reminder that progressive illness doesn’t just need end-of-life care, it needs in-life care.”

Progressive illness is not a single trauma; it is a sustained emotional siege. Its psychological effects ripple outward, often leaving behind CPTSD in both patients and families. In witnessing these long battles, we must stop pretending that the emotional wounds are secondary. They are central. They are real. And they deserve treatment too.

A Call for Systemic Change

The emotional trauma of progressive illness does not wait for palliative care to begin. It starts at diagnosis and builds with each remission, each relapse, and each unmet need. Yet, the current healthcare model tends to focus support at the final stages when it’s often too late to address the psychological damage that has already taken root. To change this, we must shift from a reactive to a proactive model of care. That means embedding emotional and psychological support into the entire illness trajectory, not as an optional extra, but as a core part of treatment. Support must begin at diagnosis, evolve with the illness, and extend beyond death to include grief and family recovery. Patients and families should never feel abandoned during the long stretches between treatments or outside hospice care.

Key systemic improvements include:

• Early psychological intervention: Trauma-informed counselling should be offered soon after diagnosis and revisited regularly throughout the progression of illness. Patients and caregivers alike need access to trained professionals who can help them process fear, loss, and compassion fatigue.

• Dedicated care coordination: A single point of contact- a case manager, nurse navigator, or palliative care coordinator should be assigned early to each patient to manage continuity of care. This professional could guide families through treatment plans, referrals, home care logistics, and support services.

• Integrated caregiver support: Carers are at high risk for burnout and trauma. Structured respite options, emotional support services, and financial guidance and assistance need to be made available not just at crisis points, but throughout the caregiving journey.

• Long-term monitoring for CPTSD symptoms: Many patients and families show signs of complex trauma without understanding what’s happening. Regular screenings for psychological distress should become standard practice in oncology and progressive illness settings. Referral pathways to trauma specialists must be clear and accessible.

• Expansion of in-life care services: Rather than overloading the final weeks with care, resources should be spread throughout the disease progression. This means consistent home visits, proactive symptom management, and emotional support long before a terminal prognosis is declared.

• Support for frontline workers: Nurses, who often become de facto counsellors, require their own systems of emotional care. Regular debriefs, mental health days, and reflective supervision should be standard, not a luxury. Compassion fatigue is real, and if left unaddressed, it can compromise the quality of care delivered and the well-being of caregivers themselves.

The bottom line: progressive illness is not linear, clean, or predictable. It is chaotic, cruel, and emotionally relentless. The trauma it causes is often unseen, misdiagnosed, or entirely ignored, especially in families and caregivers. Recognising CPTSD as a legitimate outcome of prolonged medical trauma is not just clinically appropriate, it’s humane.

At the heart of progressive illness lies an unrelenting confrontation with mortality. For patients, every recurrence or decline is a reminder that time is finite. Even in remission, there’s often no true peace, only a waiting period shadowed by uncertainty. Living under this constant threat reshapes a person’s identity, priorities, and ability to feel safe in their own body. For families, watching a loved one slowly fade becomes a prolonged mourning of the living, where hope and dread coexist. The psychological weight of this battle, with no clear endpoint, can fracture one’s sense of purpose and safety in the world. The trauma is not just in the decline or death, but in the daily reckoning with what it means to lose control, to say goodbye in stages, and to face the inevitability of loss over and over again.

As professionals who walk this path daily, nurses see what often goes unseen by systems and policies. They hold space for grief, fear, and resilience in ways few others can. But without broader, structural change, their ability to protect patients and families from the deepest wounds of this journey remains limited. It’s time we acknowledged that progressive illness isn’t just a medical condition; it’s an emotional battleground, and both patients and caregivers deserve to be supported in their fight with the unknown.

Photo by Harry cao on Unsplash

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