Content note: this article contains detailed discussion of schizophrenia.

I first met The Woman one night after turning the lights off and laying down in bed. She stood by me and gave her order: “come”. There are relatively few things I’ve been certain of in my life, but at that moment, I knew that two things were absolutely true. Firstly, that if I followed her, I would die, and secondly, that if I refused, I would die. So I laid very still, closed my eyes, and pretended to be asleep. Perhaps I was just tired, or perhaps I was hallucinating or dreaming.

In the days and months that followed, however, my life was put at risk in ever more bizarre ways that became increasingly difficult to rationalise.

Walking at dusk, I realised I had too many shadows and that at least one of them must be an impostor, drinking from my soul the way a leech saps blood from its prey. Perhaps it was just my anxiety playing tricks on me, but I avoided streetlights anyway, just to be safe.

When choosing a new colour to paint my bedroom walls, I knew that white was the only option. Any other colour would be too loud and would let signals pass through my walls, so that I could be spied on or brainwashed. I closed myself off in my unventilated room and painted for three days, making sure the coats were even and impenetrable. Perhaps the paint fumes in that confined space had messed with my head – my illogical thought processes felt logical at the time, and my newly white walls made me feel safe.

Hushed voices whispered to me constantly, sometimes to narrate my actions and other times to simply repeat nonsense. One voice in particular, Victor, rose above the rest. Victor became my personal companion and a link to a world of demons. He stayed as a shifting mass of lines in the corner of my eye. Looking at him directly would mean death.

“For the longest time, I lived in staunch denial of my diagnosis”

It was not surprising to be diagnosed with schizophrenia at the age of 18. The five so-called characteristic symptoms of psychotic disorders are delusions, hallucinations, disorganised speech, grossly disorganised or catatonic behaviour, and ‘negative symptoms’ such as a flattening of emotions. I satisfied between four and five of those symptoms, depending on how they’re assessed. Only two are required for diagnosis.

For the longest time, I lived in staunch denial of my diagnosis. I was led to believe that people with schizophrenia are crazy, dangerous, and violent. Schizophrenics drop out of university, never to complete their degrees. Schizophrenics are unable to care for themselves and must be kept in institutions or group homes. Schizophrenics do not have friends or romantic partners. As someone who is peaceable, university-educated, and living independently with an active social life, I do not fit this image. This apparent contradiction hindered not only my own acceptance of the diagnosis, but also the treatment and accommodation of it.

In the eyes of many GPs, psychologists, psychiatrists, counsellors, and university advisors, all schizophrenic patients are unable to lead autonomous lives. As a result, their advice is often aimed towards helping patients live in the relative comfort of supportive communities. They can help their patients learn basic work-readiness skills so that they can transition to living with others with the aid of a carer. Such programmes are exceptionally valuable to those who need them, but they are also limiting: anyone who successfully reaches this stage of so-called self-reliance and then progresses on to further independence will find themselves cut adrift in a society which works against them. There is effectively no guidance and no one who can provide advice for those of us who are considered “high-functioning” schizophrenics.

“Universities will throw options at your feet and leave you with the burden of sifting through them all”

I realised shortly after entering therapy that my psychologist and psychiatrist did not have my best interests at heart. Unable to accept the contradiction between my diagnosis and abilities, they unanimously suggested that I take heavy doses of strong anti-psychotic medication, drop out of university, and move into a group home. Some variation of this suggestion was repeated on a weekly basis for four years, despite my protests and multiple changes to my mental health team. I am ashamed to admit that at times I strongly considered taking their advice and broke down when told that I would never be hired by anyone if they discovered my condition and that I could obviously never have a career in academia. I was forced to accept that my mental health team could not meaningfully support me, and that I would have to pay over £100 a week for advice and medication I would immediately discard in order to avoid being sanctioned.

The threat of involuntary hospitalisation was weaponised against me, and any complaint about my situation or the stress of university would be met with the refrain of: “well if it’s so bad, I’ll call a crisis assessment and treatment team and they can put you in the hospital.” I stopped complaining. I was fine, university was fine. Yes, the voices are still there but they’re fine too, and no, there’s no need to worry, and no need to lock me away.

University officials have been more sympathetic, but like many others, they lack understanding of high-functioning schizophrenia, placing the burden on me. Answering a simple question such as “what support do you need from the university?” is an insurmountable challenge when your psychologist and GP have failed to help you explore your limitations and find methods of coping. What support do I need? Well, I cannot trust that others will be able or willing to help me during times of need, so I can only ask for flexibility in order to help myself however I see fit at the time. However, the ambiguity of this request only raises more questions: what accommodations do you need for meetings and lectures? What about office spaces? And living arrangements? And food? What should we do if there’s a crisis? “I don’t know” isn’t an acceptable answer, and “leave me alone” doesn’t satisfy many either.

With no one to guide them on what basic support would be helpful, universities will throw options at your feet and leave you with the burden of sifting through them all, trying to decide for yourself whether you’re really ill enough to need rest breaks during exams, or if you really need someone to take your notes for you in lectures. Take too few accommodations and you may struggle to cope, but take too many and you will feel guilty for taking advantage of the system, even if unintentionally.

“I decided that they had forfeited any right to know about my personal life”

By far the thorniest issue with living with high-functioning schizophrenia is to do with disclosure. Who should be made aware of my condition, and how much should they know? My undergraduate university decided that my diagnosis would not be disclosed to staff, who would only be told vague details of the study accommodations I had been granted. My professors were free to make their own assumptions and guesses as to what my condition was, and I was safe in the knowledge that nothing they guessed could ever be as damning as the truth. During those years, only two teaching staff were ever told about my condition. I bided my time for three years and worked on forming a good impression before I said the word “schizophrenia” to two academics I knew and trusted. At Cambridge the arrangement was similar, albeit slightly expanded so that more people were told about my diagnosis and the specifics of it. I can only hope that this will not destroy my career as my psychologist had warned me all those years ago.

I initially opted not to tell my friends out of fear. I didn’t know what to say or when and how to bring it up in conversation. While waiting for the right moment to say something, I heard them make disparaging comments about known schizophrenics on the news and watched as they speculated that anyone who did violent things was psychotic. I sat silently as they made jokes about school shooters and schizophrenia, hoping that their new office building wouldn’t be open-plan so that “crazy people like that can’t shoot the place up so easily.” They made these comments unaware that they were talking about me, and I decided that they had forfeited any right to know about my personal life. When they later demanded to know why I was awarded extra time on my exams (just the “right moment” I had wished for earlier), I told them I had anxiety.

Schizophrenia is my greatest secret. Early on, I felt incredibly guilty that others with conditions such as depression were taking to social media to wear their condition with pride and battle the stigma associated with mental illness. I will not join this battle, and neither will most others in my position. The stigma associated with schizophrenia is both real and extreme, and I cannot suggest in good faith to another schizophrenic that they make their condition public, knowing that doing so would likely destroy their life.

We live together in society as your friends, family members, and neighbours, but most of us will never disclose our condition to you. For those already struggling to get by and make a life for themselves, the expectation of disclosure is an unfair burden often placed on them by those who do not stand to suffer any consequences from that disclosure. I will not set myself on fire so that you may feel warm and fuzzy by the flames. The decision to disclose a hidden disability may be admirable, but it is a choice that someone must make on their own accord. As with sexuality and gender, not everyone is free to ‘come out’ as disabled, and we must respect everyone’s right to this choice.