The Problem with “High-Functioning”
I am often described as "high functioning". The evidence given for this usually centres on my PhD. I have been told that people with schizophrenia do not normally complete doctorates, despite there being several examples on the r/schizophrenia community alone. There is a tension, however, between what I appear to be on paper and what living with schizophrenia is actually like.
People see the blog posts, the peer-reviewed publications, the books and YouTube videos. They do not see the afternoon naps, the excessive drooling in my sleep, leaving the hob on overnight by accident, or boiling the kettle four times in succession because I cannot remember what happened five seconds earlier.
My journey through mental health care has also been unusually complicated.
I was first detained under Section 2 of the Mental Health Act in 2014. An ECG revealed Wolff-Parkinson-White syndrome, a congenital heart condition that made clinicians understandably cautious about prescribing antipsychotic medication. As a result, I remained unmedicated throughout the acute phase of my psychosis for four weeks. During that time I requested two Mental Health Tribunals, both of which I attended while still experiencing obvious delusions.
When my Section 2 expired, I was transferred to Section 3. On discharge, I was informed that I was entitled to Section 117 aftercare. What nobody explained was that this entitlement could include practical support such as supported accommodation. Instead, I returned to live with my mother. I remember one of her first concerns being whether she could receive financial support for looking after me. My Employment and Support Allowance was subsequently paid directly into her account, and I never received the payments myself.
The Early Intervention in Psychosis team saw me once before discharging me on the basis that my mother was caring for me.
After experiencing neuroleptic malignant syndrome on both quetiapine and amisulpride, I was advised to try living without antipsychotic medication. Regaining some physical energy enabled me to return to work, and I secured a job as a healthcare assistant on an acute admissions ward. I have many positive memories of that role. It was there that I developed an interest in psychiatry and worked alongside dedicated staff within what I came to see as an imperfect but fundamentally well-intentioned system.
At the time, I believed I had recovered from what I thought had been a single episode of drug-induced psychosis. I did not know that I had already been diagnosed with schizophrenia in 2015.
Looking back, I was clearly still unwell. I believed colleagues were bullying me and accessing my NHS records. A recent PALS investigation has confirmed that there is no evidence that my records were accessed inappropriately. At the time, however, these beliefs felt entirely real, and I eventually resigned because I believed I was being forced out. In hindsight, I suspect many of my colleagues were actually trying to support me during periods of fluctuating health and insight.
Around this time I met my former partner. After beginning my PhD and briefly returning to my mother's house, she offered me somewhere to live. We remained together for ten years. Throughout much of that relationship I believed I was well, despite repeatedly describing what I now recognise as paranoid beliefs about local conspiracies involving friends and acquaintances. Eventually, those beliefs extended to the relationship itself.
Five years into my PhD, my daughter was born. Gradually my psychotic symptoms returned, becoming particularly noticeable when she was around three years old. Concerned that I was relapsing, I visited my GP and requested that I restart antipsychotic medication. The GP sought advice from the Community Mental Health Team and prescribed amisulpride.
Shortly afterwards, I spoke with a community psychiatrist who suggested that I was not experiencing psychosis. Because my first episode had occurred many years earlier and I had lived without medication for around eight years, he felt this argued against relapse. He also suggested that people experiencing psychosis do not normally request medication themselves, and interpreted my insight as evidence that I had become attached to the idea of having schizophrenia through my doctoral research. I was advised to stop taking the medication.
Not long afterwards, I confronted my neighbours because I believed they were making hostile comments about me from their garden. The incident led me to contact the First Response service. During that call, the operator told me that my record stated I had paranoid schizophrenia. When I asked whether that was really what the record said, I was told, "Sorry, I was looking at someone else's record."
Several months later, after relationship counselling and discharge from the Community Mental Health Team, I admitted myself to A&E because my beliefs had become so bizarre that I genuinely could not tell whether I was relapsing or whether I was in real danger.
I was detained under Section 2 once again.
During that admission I was informed that I had, in fact, carried a diagnosis of schizophrenia since 2015. I was also told that my Section 117 entitlement had "lapsed". Both pieces of information came as complete surprises.
Following discharge, I spent around a year recovering from what was now clearly a second episode of psychosis, accompanied by prominent negative symptoms. When my discharge referral was sent to the Community Mental Health Team, it was rejected twice. I was told the reason was that I was "too high functioning".
Eventually my relationship ended, largely because my illness had exhausted my former partner. I left both my home and my job and returned once again to my mother's house. I became severely depressed and made a serious attempt on my own life.
After being assessed as unfit for work through Universal Credit, I was eventually able to rent a flat near my daughter, where I now live independently.
On paper, my story appears impressive. I experienced psychosis, remained unmedicated for many years, worked in the NHS, completed a PhD, published research, and now live independently.
The reality is rather different.
I rarely leave my flat because residual symptoms remain significant. I no longer drive because I do not believe it is safe. I avoid many social situations because I continue to experience ideas of persecution. I have resigned from two jobs because I mistakenly believed colleagues were orchestrating campaigns to force me out.
Only today, while walking home from the shops, I passed a man who looked in my direction while speaking loudly to someone beside him. I could not hear what he said, but I immediately became convinced that he was talking about me. For a moment, I nearly confronted him before recognising that this was far more likely to be another manifestation of my illness.
Recently I contacted my local authority's Adult Social Care team to ask about my Section 117 aftercare entitlement. They informed me that they held no records and could not arrange an assessment without a GP referral. I have therefore asked my local NHS Trust's PALS team to investigate what happened. I know that I was told in 2014 that I qualified for Section 117 aftercare, and I know that I was told in 2023 that it had "lapsed". What I do not know is whether the legal process required to end that entitlement ever took place.
I am not pursuing clarification because I expect supported housing. I already have somewhere to live. Rather, I wonder whether there are forms of ongoing support that might have helped me, and may still help now: regular contact with a support worker, psychological therapy, or structured support with managing the long-term effects of schizophrenia. I have repeatedly been told that talking therapies could be beneficial, yet historical self-referrals to the local Improving Access to Psychological Therapies service were rejected because my history of psychosis made me "too complex".
When I reflect on my experiences, I recognise that my case is unusual, and that unusual cases are often harder for services to navigate. I do not believe that fully explains what happened, however. Nor do I think that professionals—or even people who know me well—fully appreciate what living with schizophrenia actually involves.
I am described as high functioning, but I do not feel high functioning.
I am fortunate to have retained insight into my illness and to have spent years researching it academically. Ironically, those strengths have sometimes seemed to close doors rather than open them. My own interpretations of my experiences have often been viewed with suspicion, while my research background has rarely been considered relevant within clinical consultations.
There are many people living with schizophrenia whose symptoms are far more severe than mine. If navigating the system has often been difficult despite my insight, education and ability to advocate for myself, I cannot help wondering how many others quietly fall through the same gaps.
Perhaps I am "high functioning" if the label simply means that I managed to complete a PhD while living with schizophrenia. But if that same label obscures the daily reality of memory problems, paranoia, cognitive impairment, exhaustion, and an ongoing need for support, then it explains very little. Labels can be useful shorthand, but they should never become a substitute for understanding the person behind them.
