Living With CIDP: My Story of Illness, Intensive Care, and Recovery

Ayoposi Ojelabi

A personal account of chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), intensive care survival, and long-term recovery.

This essay follows a single illness from its first subtle warnings through misinterpretation, diagnosis, medical crisis, intensive care, and the slower work of recovery afterward. It traces not only physical change but the experience of uncertainty, dependence, and the gradual reconstruction of stability when outcomes are not guaranteed.

What is chronic inflammatory demyelinating polyradiculoneuropathy (CIDP)?

Chronic inflammatory demyelinating polyradiculoneuropathy is a rare autoimmune disorder that damages the protective covering of the peripheral nerves. As communication between the brain and muscles becomes disrupted, weakness, numbness, and problems with coordination can develop.

Diagnosis usually involves neurological examination, nerve conduction studies, and analysis of spinal fluid. Treatment often includes therapies such as intravenous immunoglobulin (IVIG), plasma exchange, steroids, and in more severe cases additional immune-modifying treatment.

Medical descriptions explain how CIDP works. They rarely describe what it feels like to live through it.

My experience began gradually and developed into a prolonged medical crisis that included intensive care, respiratory failure, months of hospitalisation, and the slow reconstruction of daily life afterward.

Early Signs

The first signs were subtle.

At the time I was working as a computer engineer and living a normal, active life. Nothing initially suggested that a serious neurological illness was developing.

Gradually, small changes began to appear. While driving, I noticed my grip on the steering wheel did not feel as firm as it used to. My hands seemed weaker. Controlling the wheel required more effort than before.

Simple tasks also became unexpectedly difficult. Buttoning a shirt began to require concentration. My fingers no longer responded with the same precision. Climbing stairs became harder. My legs felt unusually heavy, and movements that had once been automatic required real effort.

At first I assumed the problem was temporary fatigue or stress.

But the weakness did not disappear.

Tasks that had once been routine began to demand attention.

The early phase of neurological illness is often confusing because symptoms can easily be misinterpreted. Weakness, numbness, and fatigue are easy to explain away. For many people with CIDP, this is also the stage when diagnosis is delayed.

The Search for a Diagnosis

As symptoms worsened, it became clear that something more serious was happening.

Medical consultations began. Tests were performed. Several explanations were considered. Like many patients with rare neurological conditions, the path toward diagnosis was not immediate.

Eventually the condition was identified as chronic inflammatory demyelinating polyradiculoneuropathy.

CIDP occurs when the immune system attacks the protective covering of the nerves. Communication between the brain and muscles becomes disrupted. The result is progressive weakness and sensory change that can worsen if treatment is delayed.

For some people the illness progresses slowly. For others it becomes severe.

When the Illness Became Critical

At a certain point the illness escalated beyond weakness.

My condition deteriorated to the point that hospitalisation became necessary. What began as a neurological disorder eventually affected breathing and other vital functions.

I was admitted to intensive care.

In intensive care, time behaves differently. Days no longer move in familiar ways. Medical equipment surrounds every aspect of life. Machines monitor breathing, heart rhythm, and oxygen levels.

At one point my condition required mechanical ventilation.

Losing control over something as fundamental as breathing changes a person’s understanding of life very quickly.

Life in Intensive Care

Extended time in intensive care is physically demanding, but the psychological impact can be equally significant.

Isolation is common. Patients are separated from normal routines and are often unable to communicate normally, especially during procedures such as intubation or tracheostomy.

During that period the body became the focus of continuous medical intervention. Treatment included intravenous immunoglobulin (IVIG), steroids, plasma exchange, respiratory support, and physical rehabilitation.

As the illness progressed, treatment required escalation to low-dose rituximab and cyclophosphamide, followed later by autologous hematopoietic stem cell transplantation (AHSCT). These interventions reflected the seriousness of the condition and the need to stabilise the immune system when earlier treatments were not sufficient.

Recovery after these treatments remained gradual and uncertain, and stability developed slowly rather than as a single turning point.

The Long Road of Recovery

Leaving intensive care does not mean the illness is over.

For many patients the most difficult stage begins afterward.

Muscles weakened by illness and inactivity must be retrained. Basic activities such as standing, walking, or eating independently may need to be relearned.

Progress often arrives in small increments:

a few extra steps
a slightly stronger grip
a day that feels marginally more stable than the one before

These changes may appear minor from the outside, but they represent real movement forward.

Recovery from severe illness requires patience and discipline that are difficult to understand until they become necessary.

The Psychological Dimension of Illness

Serious illness changes more than the body. It changes how a person understands independence and identity.

Many people define themselves through productivity and physical capability. When illness removes those structures, the question of who you are becomes unavoidable.

Long periods of hospitalisation introduce their own challenges:

isolation
uncertainty about the future
fear of permanent disability
dependence on others for basic needs

Learning to live within those realities becomes part of recovery itself.

What CIDP Taught Me About Endurance

Severe illness changes what strength means.

Strength is often imagined as determination or performance. During illness it can look very different.

Sometimes strength means enduring another day of treatment.

Sometimes it means accepting help when independence is temporarily impossible.

Sometimes it means continuing to believe improvement is possible even when progress is slow.

Recovery is rarely dramatic.

It is usually quiet and gradual.

Life After the Crisis

Even after medical stabilisation, life rarely returns immediately to its previous form.

Recovery becomes a process of reconstruction.

The body adapts.
The mind adapts.
Routines adjust to new realities.

For many people living with CIDP, improvement continues slowly over months or years. Each stage requires persistence.

Final Reflection

Medical descriptions explain the disease.

They rarely describe the interruption it creates inside a life.

Living with CIDP means adapting to uncertainty, adjusting to physical limitation, and learning patience in ways most people never expect.

Recovery is not simply a return to the past.

It is the gradual construction of a different stability.

Although I am not writing from a place of complete recovery, I am writing from a place where recovery is possible. This experience forms part of the wider account described in Through Fire and Silence, where the physical limits of illness and the discipline required to rebuild stability are explored in more detail.