My CIDP Story: Illness, Intensive Care, and Recovery

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

By Ayoposi Ojelabi · Published: 27 March 2026

Living with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) is different for every patient. This essay tells how the illness unfolded in my own life, from its first subtle warnings through a delayed diagnosis, intensive care and the long, unfinished work of recovery. I wrote it for people living with CIDP, for those supporting someone they love, and for healthcare professionals who want to understand not only the illness itself but also the uncertainty, dependence and resilience that often come with it.

What is chronic inflammatory demyelinating polyradiculoneuropathy (CIDP)?

CIDP, which is also written as chronic inflammatory demyelinating polyneuropathy, is a rare autoimmune disorder that damages the protective covering of the peripheral nerves. As communication between the brain and the muscles is disrupted, weakness, numbness and problems with coordination can develop. Diagnosis usually involves a neurological examination, nerve conduction studies and analysis of spinal fluid, and treatment often includes intravenous immunoglobulin (IVIG), plasma exchange and steroids, with additional immune-modifying treatment in more severe cases.

Medical descriptions explain how CIDP works, but they rarely describe what it feels like to live through it. My own 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 afterwards.

Early Signs

The first signs were subtle. I was working as a network engineer and living a normal, active life, and nothing suggested that a serious neurological illness was developing. Then small things began to change. While driving, I noticed that my grip on the steering wheel was not as firm as it used to be. Buttoning a shirt started to need concentration because my fingers no longer responded precisely, and stairs became harder because my legs felt unusually heavy.

At first I put it down to fatigue or stress, but the weakness did not go away, and tasks that had once been automatic slowly began to demand my full attention. The early phase of a neurological illness is confusing because the symptoms are easy to explain away, and for many people with CIDP this is also the stage at which diagnosis is delayed.

The Search for a Diagnosis

As the symptoms worsened I knew something more serious was happening, but getting an answer took far longer than I expected. I was referred to a neurologist, and the earliest NHS appointment was nearly a year away. By then the weakness had spread significantly. In A&E at a hospital in East London, after a long wait and several tests, I was told that I had “neuropathy of unknown origin”, which confirmed that something was wrong with my nerves but gave me no cause, no direction and no treatment.

In June 2022 I paid to see a private neurologist, and after a nerve conduction study I finally had a name for it. The diagnosis brought relief, because after months of unclear answers I knew what I was dealing with, and it also brought fear, because I had never heard of CIDP and did not know what it meant for my future. In July 2022 I was referred to the National Hospital for Neurology and Neurosurgery, where more tests followed: three nerve conduction studies, two EMGs and a lumbar puncture.

CIDP occurs when the immune system attacks the protective covering of the nerves, and the result is progressive weakness and sensory change that can worsen if treatment is delayed. In a condition like this, time matters.

When the Illness Became Critical

My first treatment was high-dose steroids. I held on to that prescription like a promise and waited for the improvement, but instead I grew weaker. IVIG came next, then plasma exchange, then mycophenolate, cyclophosphamide and rituximab. By April 2024 the conversation had moved to a stem cell transplant, which would use my own cells to reset my immune system. It carried serious risks and my consultant was clear about them, but after everything that had already happened I agreed.

In May 2024 I was transferred to University College London Hospital for the transplant. On the night of 6 August, the last day of the process, I had difficulty breathing before bed. I told myself I was exhausted and went to sleep.

On 7 August I woke up intubated and unable to speak. My lungs had failed during the night, there had been no time for discussion, and a tracheostomy had been performed while I was unconscious. Machines were now breathing for me completely. Waking to find that your body has handed over something as basic as breathing is hard to describe, because it is not only physical but also the shock of losing control over the most fundamental thing a body does.

Life in Intensive Care

What followed was ten months in intensive care across four hospitals. In October 2024 I was moved from University College London Hospital to Salford Royal in Manchester, and every transfer needed careful planning around my ventilator. For several months the team tried to wean me off it, lowering the pressure and the oxygen support step by step, and each time my carbon dioxide levels rose. They also tried to cuff down my tracheostomy so that I could speak, and that failed repeatedly because my lungs were too weak. I communicated with an alphabet chart, one letter at a time.

On 20 December 2024 my consultant sat down with me and my wife and said the words I had been dreading for months: they had tried everything medically, and there was nothing more they could do. I had expected that moment to break me, and it did not. What I felt, and I have thought about this carefully since, was peace, followed by something that felt like the beginning of a fight rather than the end of one. When medicine stepped back, something else stepped forward. I came to understand it as acceptance, which was not surrender but the moment I stopped waiting for something to arrive from outside and began working with what I actually had.

In January 2025 I was transferred to Wythenshawe Hospital, which specialises in long-term ventilation. What months of attempts elsewhere had not achieved happened there in two weeks: the tracheostomy cuff was reduced and my voice returned, and I heard myself speak for the first time in months. I was also moved from the hospital ventilator to a smaller portable machine, the Nippy 4, which allowed me to leave intensive care.

Intensive care is physically demanding, but the isolation can weigh just as heavily. When you cannot speak you become a patient to whom things are done, and it takes effort to remain a person.

The Long Road of Recovery

Leaving intensive care does not mean the illness is over, and for many patients the hardest stage begins afterwards. I arrived at a community rehabilitation facility in Southport in June 2025, full of hope. Muscles weakened by illness and inactivity had to be retrained, and basic things such as standing, eating and drinking had to be relearned. Even drinking water became a skill, because it made my oxygen levels drop and I had to learn through careful observation what was safe for me.

Progress arrives in small increments:

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

From the outside these changes can look minor, but after what I had been through they were not small. Recovery from severe illness takes a patience and discipline that is hard to understand until you need it.

The Psychological Dimension of Illness

Serious illness changes more than the body, because it changes how you understand independence and identity. Many of us define ourselves through productivity and physical capability, and as a network engineer I knew who I was in that role. When illness removes that structure, the question of who you are becomes unavoidable. Long hospital stays bring their own challenges:

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

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

What CIDP Taught Me About Endurance

Severe illness changes what strength means. Sometimes it means enduring another day of treatment, sometimes it means accepting help when independence is impossible, and sometimes it means believing that improvement is still possible when progress is slow. I used to imagine strength as determination, but in practice it often looked quieter: asking questions, understanding my treatment and refusing to give up my say in my own care.

Life After the Crisis

Even after medical stabilisation, life does not return to its old form. Recovery becomes a process of reconstruction in which the body adapts, the mind adapts and routines adjust to new realities. For many people with CIDP, improvement continues slowly over months or years.

Where I Am Now

I am still in rehabilitation and still in treatment. I now have IVIG once every two weeks, and I still use a ventilator.

My hands have not recovered enough for me to type, so I write with a head-tracking device attached to my glasses, which is how I wrote this essay and my three books. Writing began as a way to process anger and fill long hours in rehabilitation, and it has become the way I make sense of what happened and try to reach others who are going through something similar.

Final Reflection

Medical descriptions explain the disease, but they rarely describe the interruption it creates inside a life. Recovery is not a return to the past but the gradual construction of a different stability.

I am not writing from a place of complete recovery, but I am writing from a place where recovery is possible. That hope did not come from dramatic breakthroughs. It came from learning that rebuilding a life happens quietly, one ordinary day at a time.

If you are newly diagnosed, my essay “What I Would Tell Someone Newly Diagnosed With CIDP” may help. This is a personal account, not medical advice, so please speak to your own medical team about your care.