WHEN CIDP AFFECTS THE MIND
An Honest Account of Depression, Desperation, and What Helped Me Stay.
Ayoposi Ojelabi
The medical literature on Chronic Inflammatory Demyelinating Polyneuropathy focuses on nerves. On demyelination, immune responses, and treatment protocols. What it rarely describes with any depth is what a serious, progressive neurological illness does to the mind of the person living inside it.
This essay is about that.
Not in general terms. There is already enough general writing about illness and mental health. This is about what happened inside my own mind during the years of my CIDP journey, including the parts that are difficult to admit.
Depression Did Not Announce Itself
Depression during long illness does not always arrive as a crisis. It did not for me.
It arrived as a slow accumulation of small permissions. A thought left unchallenged. A quiet preference for sleep over being awake. A gradual narrowing of what felt bearable.
There were nights in hospital when I did not want to see another morning.
Not because of a dramatic breakdown. There was no dramatic breakdown. It was quieter than that. It was the exhaustion of someone who had been fighting for a long time with no visible end point, whose body was not cooperating, whose independence had disappeared, and who found that consciousness itself had become heavy.
I asked for sedation more often than my pain required.
Not for medical reasons.
Because being awake required more effort than I had available.
I had suicidal thoughts. Not plans. But the quiet wish that sleep would last longer than it did. That morning would not arrive so quickly. That the weight of another day could be postponed.
I am saying this directly because people living through serious illness need to know this response exists. It is not a personal failure. It is not weakness. It is a human reaction to prolonged uncertainty and loss.
When Certainty Collapses
When the body is failing and medicine keeps offering uncertain answers, the mind looks for certainty wherever it can find it.
During the most frightening periods of my illness, that search led me to places I am not proud of. I made decisions driven by desperation that I would not make today. I paid for things that promised certainty and delivered none. On one occasion I stopped my medication because someone without medical authority told me to.
I describe that experience more fully in another essay, When Desperation Meets Manipulation, which I will publish separately because it deserves its own space.
What I want to say here is simpler.
Desperation is a real vulnerability.
When treatment is slow, outcomes are unclear, and the future feels unstable, the mind reaches for something solid to hold.
That is not weakness.
It is pressure.
What matters is recognising that pressure before it costs more than it already has.
What Pulled Me Back
There was no single turning point.
Recovery did not arrive as a moment. It arrived as repetition.
Small interruptions to the descent.
My wife’s voice on FaceTime reading my lips for nurses when I could not speak.
My daughter’s singing through a phone screen.
Adeyemi arriving each night to set up my NIV machine and leaving quietly after midnight.
These were not cures for depression.
They were interruptions to it.
Enough interruptions, sustained over enough time, created movement.
My faith also changed shape during this period. It stopped being about dramatic intervention and became something quieter. Companionship rather than rescue. The sense that I was not entirely alone inside what was happening, even on the nights when I felt closest to disappearing.
Slowly, unevenly, the deepest part of the depression began to lift.
Not completely.
But noticeably.
I am still navigating the psychological weight of a long illness that has not finished yet. I am still in the process.
But I am not where I was.
And from the inside, that distance matters.
What I Want Anyone Reading This to Know
If you are living with CIDP and struggling psychologically, these things are connected.
The illness does not only affect your nerves.
It affects identity.
Independence.
Contribution.
Certainty about the future.
Depression under those conditions is not separate from the illness. It is a response to it.
That does not mean it should be left unaddressed.
Tell your GP.
Tell your medical team.
Support during serious illness is not always clearly signposted, but it exists and it helps.
And if you are in the part of the journey where certainty has collapsed and you find yourself reaching for quick answers, please be careful.
Desperation is a real vulnerability.
Faith was not the problem. What caused harm was treating it as something transactional.
You are not weak for struggling with this.
You are human, under conditions that would test anyone.
Hold on.
If you or someone you know is experiencing thoughts of suicide or self-harm, please speak to your GP, contact Samaritans on 116 123, or visit your nearest A&E department. Support is available, and you do not have to face this alone.
Browse All Essays → Living With CIDP → Guarding the Mind → View the Books →
Ayoposi Ojelabi|AUTHOR 