Chapter 27 — A Diagnosis That Travelled
How a disputed psychiatric diagnosis travelled through later records and clinical relationships long after the circumstances in which it arose.
After 2007
The previous chapter dealt with 2007.
This chapter is about what happened afterwards.
The distinction matters because a diagnosis does not necessarily remain where it was made.
It can move.
It can appear in a health summary, a referral, a hospital admission, a specialist letter or another database.
A later clinician may encounter the label without encountering the uncertainty which originally surrounded it.
That is what happened with “paranoid schizophrenia”.
For many years I knew that the words existed somewhere in my history. What I did not initially appreciate was how widely they could travel and how much authority they could acquire simply by being present in a medical record.
A Question Mark
One of the most important discoveries came from going backwards through the documentation rather than simply accepting the summaries which had been carried forward.
A later psychiatric review reproduced a general practice history from 2012 which described the 2007 entry as:
“drug induced psychosis, ? schizophrenia.”
The question mark matters.
It does not say the same thing as:
“schizophrenia.”
Still less does it say:
“established paranoid schizophrenia.”
Elsewhere in the 2007 records there were clinicians who did use paranoid schizophrenia as a diagnosis.
There were also clinicians who disagreed with that formulation, and there were other diagnoses before, during and after the same period.
I have already explored much of that in the previous chapter.
What interests me here is what happened when the uncertainty did not travel with the words.
A question can become a statement.
A statement can become medical history.
Medical history can then appear to be something everybody already knows.
The Years Did Not Behave Like the Label
The years following 2007 did not produce the pattern I would later have expected if the psychiatric description in my records accurately described an ongoing schizophrenia-spectrum illness.
A GP Mental Health Care Plan from December 2011 recorded that I had no hallucinations, normal insight and judgement and no suicidal thoughts. The diagnosis recorded there was post-traumatic stress disorder.
My difficulties were described in terms of flashbacks, poor sleep, nightmares, intrusive thoughts and anxiety connected with childhood sexual abuse.
There was still distress.
There was still trauma.
There were still problems with memory and with the effect the past could have upon the present.
But the record was not describing an ongoing psychotic illness.
That distinction did not stop the old label from remaining available for later use.
Different Assessments, Different Language
In 2021 I underwent a lengthy medico-legal psychiatric assessment with Dr Georgiana Antoce.
I regard that report as disputed in several respects and have discussed those difficulties elsewhere in this book.
But even that report did not simply reproduce “paranoid schizophrenia” as an unquestioned current diagnosis.
Its diagnostic formulation centred substantially upon complex trauma, chronic post-traumatic stress disorder and dissociative processes.
There were question marks around some of its own diagnostic possibilities.
That report therefore became another layer rather than a simple confirmation of the old one.
The psychiatric record was becoming more complex.
The medical-history shorthand was not.
Julian
The most important longitudinal clinical relationship in this part of my life has been with Dr Julian Lim.
Julian has worked with me for more than a decade.
That length of contact matters.
He has not seen me only during one admission, one crisis, one legal assessment or one difficult consultation.
He has seen me across years.
He has seen changes in my health, my circumstances, my memories, my relationships and my ability to understand what dissociation has done within my life.
His diagnosis of Dissociative Amnesia finally provided me with a framework that corresponded with experiences I had struggled to explain.
In December 2025 he provided a specific independent psychological opinion concerning the schizophrenia label.
His position was unequivocal.
In more than ten years of clinical work with me, he reported that he had not observed delusions, hallucinations, formal thought disorder, disorganised or catatonic behaviour, or negative symptoms consistent with schizophrenia.
He concluded that I did not meet the diagnostic criteria for paranoid schizophrenia or another schizophrenia-spectrum or psychotic disorder.
He considered my presentation trauma-related and non-psychotic, with Complex PTSD and Dissociative Amnesia providing the more appropriate clinical explanation.
Julian was also careful about the limits of that opinion.
He was giving a psychological opinion based upon longstanding treatment and observation. He was not claiming to have independently reconstructed every decision made by every psychiatrist in 2007.
That limitation made the report stronger for me, not weaker.
It said what he could support.
It did not pretend to say more.
When an Old Diagnosis Became New Again
The issue became particularly visible in my later relationship with my GP, Dr Melanie Sheath.
That relationship was not always difficult.
There were periods when I regarded Melanie as being very supportive. She helped me with physical health issues, referrals and investigations. At one point I felt that she was prepared to go into battle for me over the psychiatric diagnosis itself.
That history is important.
I do not want to rewrite a relationship retrospectively merely because it later deteriorated.
Something changed.
At some point “paranoid schizophrenia” began appearing prominently in referral material.
I challenged it.
My recollection is that I was initially told that I had supplied the diagnosis myself.
That was especially frustrating because I had certainly spoken about paranoid schizophrenia.
But I spoke about it as a diagnosis I disputed.
Referring to a label which has been used against you is not the same as adopting the label as your diagnosis.
A Very Small Christmas Observation
One memory from that period has stayed with me because it was so ordinary.
Around Christmas, Melanie made a comment about me not getting into the Christmas spirit.
On its own, that sentence proves very little.
People fail to get into the Christmas spirit for hundreds of reasons. Some people do not particularly value Christmas at all.
I cannot know precisely what significance Melanie placed upon the remark.
What changed for me was the context in which I heard it.
By then I knew that the schizophrenia label had entered the foreground of my medical relationship.
I had become increasingly conscious that ordinary behaviour could be observed through that background.
A comment which might otherwise have disappeared from memory therefore stayed with me.
It was not the comment itself that troubled me.
It was the possibility that increasingly ordinary things about me were being read through a psychiatric history which I was actively challenging.
The Referral Problem
The difficulty became more concrete when the diagnosis appeared on referrals.
A referral does more than transfer the immediate clinical question.
It introduces the patient.
Before the specialist has met me, the referral can already have told that person what kind of patient I am.
If “paranoid schizophrenia” appears in that introduction, it becomes part of the first impression whether or not the specialist consciously intends that to happen.
This was particularly concerning because many of the referrals I needed related to physical conditions.
I was trying to obtain investigation of breathing difficulties, pain, retained foreign bodies and mechanical symptoms.
I did not want an unsupported psychiatric label silently altering the threshold at which those reports were believed.
“You Need to Listen to Me”
The disagreement with Melanie did not occur in one consultation.
It developed over time.
I repeatedly tried to explain that the diagnosis was contested and that my references to it should not be interpreted as confirmation.
I remember finding myself saying:
“You need to listen to me.”
And:
“You are not listening to me.”
Those sentences became a measure of the change in the relationship.
I had gone from regarding my GP as somebody who might help me challenge the old diagnosis to feeling that I was now having to challenge its use within the GP relationship itself.
The Harder I Pressed
My experience was that the harder I pressed for the diagnosis to be examined, the harder the resistance became.
That is my perception of the interaction.
I cannot know what Melanie herself believed was happening or what clinical reasoning she applied unless it was recorded and made available to me.
From my side, however, the pattern was unmistakable.
I would raise the diagnosis.
I would ask where it came from.
I would challenge its continued inclusion.
I would obtain further material.
And still I would encounter it again.
Eventually I sent information which I believed seriously undermined the basis upon which the diagnosis was being treated as an established fact.
I do not recall receiving a substantive response to that evidence.
The absence of a response became almost as important as disagreement would have been.
If the evidence was wrong, I wanted to know why.
If the evidence was incomplete, I wanted to know what was missing.
If the diagnosis could still be supported, I wanted to see the basis.
Silence answered none of those questions.
A Relationship Can Change Without Becoming Entirely False
This is where writing the chapter carefully matters.
Melanie had helped me.
At times I trusted her.
At times I believed she was one of the people willing to support me when other parts of the health system were difficult to navigate.
Later the relationship became increasingly negative.
Both things can be true.
The later conflict does not erase the earlier support.
The earlier support does not require me to ignore what happened later.
One of the costs of a diagnostic dispute is that it can consume the clinical relationship around it.
Appointments which should have been about current health increasingly contained another struggle:
Who was I in the record?
Who had the authority to answer that question?
Evidence from Somewhere Else
Eventually I began obtaining enough support outside that relationship to stop depending upon one GP to resolve the problem.
Julian's reports were central.
Other medical records became important.
The 2011 Mental Health Care Plan documenting PTSD, no hallucinations and normal insight and judgement was important.
The original 2007 material became important.
The question marks became important.
The disagreements between clinicians became important.
Instead of repeatedly saying:
“That diagnosis is wrong,”
I could begin asking:
“Show me where it was established.”
That was a different position.
Searching the Files
By then I had accumulated an extraordinary quantity of records.
There were hundreds of PDF files, many of them containing dozens or hundreds of pages.
No human being could reliably remember where every relevant sentence was located.
I began searching them electronically.
Words became pathways.
“Schizophrenia.”
“Psychosis.”
“PTSD.”
“Delusion.”
“Hallucination.”
“Dissociation.”
A diagnostic history which had seemed impenetrable when scattered across boxes and systems became much easier to interrogate when the records could be searched together.
The same technology which I was using to compensate for my memory difficulties also allowed me to ask questions of the institutional memory.
What a Records Officer Told Me
During the formal effort to have the records corrected, I had a telephone conversation with a person involved in managing the record request.
My recollection of that conversation is that he explained an important possibility.
A condition might have been raised or discussed somewhere in the historic record without ever becoming the settled diagnosis which later summaries made it appear to be.
As I remember the conversation, his own examination of the material had not located the kind of clear diagnostic foundation which the later references had led me to expect.
I also understood from the underlying material that the schizophrenia interpretation had been contested by other clinicians at the time.
That telephone conversation was extremely important to me.
But I distinguish it from the documentary record.
It is my recollection of what I was told.
Where possible, the formal documents should carry the greater evidentiary weight.
Not One System
I had originally imagined that correcting a medical record might work something like correcting a spelling mistake.
Find the error.
Demonstrate the error.
Correct it.
The reality was more complicated.
There was no single sheet of paper on which the diagnosis lived.
It existed in multiple systems.
Different hospitals could hold different versions.
A correction in one service did not necessarily correct another.
A GP record was separate again.
A referral which had already been sent could not be pulled back simply because a later record was amended.
Police and legal material created other pathways again.
The diagnosis had travelled farther than any single correction could reach.
The Amendment Process
By late 2025 and early 2026 I was no longer content merely to explain the problem verbally.
I began pursuing formal amendment and clarification.
That required identifying which organisation held which record and dealing with them separately.
Metro North eventually engaged with the issue.
Material from Dr Lim was supplied.
The matter was referred within the health service for consideration.
Records were reviewed.
Corrections and annotations began to occur.
But even when one organisation responded appropriately, the problem was not finished.
Redcliffe records, for example, could require their own amendment process.
The history demonstrated the central problem:
information can spread automatically;
correction does not.
The Longitudinal Evidence
Julian's December 2025 opinion became particularly valuable because it addressed time.
A single assessment can always be criticised as a snapshot.
More than ten years of treatment is different.
Across that period he reported no hallucinations, delusions, formal thought disorder, disorganised or catatonic behaviour or negative symptoms consistent with schizophrenia.
He also noted that during his treatment I had not required antipsychotic medication and had not developed psychotic symptoms in its absence.
That does not magically reconstruct 2007.
It does something else.
It makes it increasingly difficult to treat a disputed historical label as a timeless description of the person standing in front of a clinician many years later.
Historical Does Not Mean Current
This became one of the simplest points I wanted later clinicians to understand.
A statement can legitimately remain in a historical record because it was written at the time.
That does not automatically make it the correct current diagnosis.
There is an important difference between:
“In 2007, paranoid schizophrenia was recorded as a diagnosis”
and:
“This patient has paranoid schizophrenia.”
The first preserves history.
The second asserts a current clinical fact.
Those sentences should not be treated as interchangeable.
The Physical Patient
The problem became more serious as my physical health deteriorated.
I was no longer arguing about a psychiatric label in an abstract setting.
I was entering hospitals with COPD, respiratory compromise, pain, gastrointestinal bleeding, bladder cancer, mobility difficulties and questions about old injuries and retained foreign material.
In that setting credibility matters.
If I say:
“When my arm is raised in this particular way, my oxygen level drops,”
I need that statement investigated as a clinical observation.
If I identify a particular site of pain or a reproducible mechanical trigger, I need the physical question examined.
A psychiatric history may sometimes be clinically relevant.
It should not become a shortcut around examining the body.
A Diagnosis Does Not Have to Be Mentioned
One of the difficult things about this kind of label is that I cannot always know when it has influenced an encounter.
A clinician does not have to say:
“I do not believe you because your record says paranoid schizophrenia.”
Usually nothing that explicit occurs.
The possibility operates more quietly.
Was my description treated as reliable?
Was a symptom investigated?
Was unusual behaviour interpreted through trauma, pain, medication, dissociation or psychosis?
Was disagreement treated as useful information or as evidence that I lacked insight?
Often I cannot answer those questions with certainty.
That uncertainty is one reason record accuracy matters so much.
Breaking Away
Eventually I reached the point where continuing the conflict with Melanie was itself becoming harmful.
I had gained support elsewhere.
I had Julian's opinion.
I had accumulated more of the underlying records.
I had begun dealing directly with health-service record processes.
I no longer needed the entire issue to be resolved inside one GP relationship.
That made it possible for me to break away.
I do not regard changing doctors as evidence that every part of the previous care was bad.
It was a recognition that trust had deteriorated to a point where the relationship was no longer functioning as I needed it to.
Sometimes continuity of care is valuable.
Sometimes remaining in a relationship merely because it provides continuity preserves the wrong thing.
The Burden Reverses
There is something structurally peculiar about correcting a psychiatric misdiagnosis.
The institution does not necessarily have to keep proving the diagnosis.
The patient may have to keep disproving it.
Once the label exists, it can be copied with very little effort.
Removing it may require reports, correspondence, record requests, complaints, amendments and repeated explanation.
The original words travel cheaply.
The correction travels slowly.
That asymmetry has occupied years of my life.
What I Was Actually Asking For
I was not asking institutions to erase 2007.
I was not asking them to pretend that no psychiatrist had ever used the words paranoid schizophrenia.
That would itself falsify the history.
I wanted the historical record to remain historical.
I wanted disputed conclusions identified as disputed.
I wanted later clinical evidence incorporated.
I wanted current clinicians to know that my longstanding treating psychologist did not support a schizophrenia-spectrum diagnosis and had instead diagnosed trauma-related dissociative conditions.
And where an active diagnosis was unsupported, I wanted it removed from places where it continued to present itself as a current fact.
The Diagnosis Had Become an Event
By then I had begun to understand something I had not understood in 2007.
A diagnosis can itself become an event in a person's life.
There was whatever happened to me psychologically during the crisis.
Then there was the diagnosis applied to that crisis.
Then there were the consequences of the diagnosis.
Those are three different things.
The third can continue long after the first has passed.
For me, “paranoid schizophrenia” became less a description of an illness I experienced than a problem I repeatedly encountered inside other people's records.
What Travelled
The most striking part is that the label travelled better than the evidence which challenged it.
The schizophrenia reference travelled.
The question mark did not always travel.
The competing diagnoses did not always travel.
The later PTSD records did not always travel with it.
The absence of hallucinations did not always travel.
The normal insight and judgement did not always travel.
Dissociative Amnesia did not always travel.
Julian's decade of longitudinal observation had to be deliberately introduced into systems which already contained the older words.
That is how a diagnosis acquires a life of its own.
The Record Can Change
There is nevertheless something important in what happened next.
Once I had enough evidence and enough support, parts of the system did respond.
The diagnosis was no longer something I had only to complain about.
It became something that could be formally questioned, annotated, amended and placed against later professional opinion.
That process was frustratingly slow and fragmented.
But it demonstrated that a medical record is not sacred text.
It can be challenged.
It can be corrected.
It can be contextualised.
And the person whose life it describes is entitled to ask where a statement came from and what evidence supports its continued use.
The Difference
There is a profound difference between saying:
“I do not like this diagnosis.”
and saying:
“I have examined the source material. There were competing formulations. There was recorded uncertainty. Later assessments do not support the label. My treating psychologist of more than ten years has documented the absence of the defining psychotic features. Please show me the evidence for continuing to use it as my current diagnosis.”
It took me years to reach the second position.
Once I did, the balance changed.
A Diagnosis That Travelled
The diagnosis began in a period of crisis.
It travelled through records long after the crisis.
At different times it entered medical care, referrals, administrative processes and the way professionals could understand what I was telling them.
Eventually I began following it.
Where did it come from?
Who had actually diagnosed it?
Who disagreed?
What did later clinicians observe?
Why was the old label still being treated as current?
Those questions did not immediately remove it.
They did something more fundamental first.
They stopped the words “paranoid schizophrenia” from functioning as an answer.
They turned them back into a question.
