The death of Nobel prize-winning mathematician John Nash last week prompted much debate and discussion of his mathematical legacy and the widespread application of his work in the field of economics and elsewhere.

Although Nash’s diagnosis of schizophrenia also received much attention, not least in the film A Beautiful Mind, it is striking how little attempt has been made to understand his experience on his own terms. Instead, again and again we have seen the truth of Nash’s struggles with “mental disturbance” (his own term) sacrificed to the requirements of others, be it the Hollywood story machine or critics keen to discredit his equilibrium theory. According to one contributor in the comments on the Guardian website, “The truth about John Nash and how a paranoid schizophrenic’s warped views of human relations came to be part of major institutions is quite horrifying.” Shocking as such statements are, many people with a mental health diagnosis will read them with a sense of weary recognition.

One of the problems with diagnoses is the way in which they can be requisitioned by others to suit their purposes, even if, or especially if, those others have neither understanding nor interest in the reality of an individual’s experience. It’s one of the reasons so many people choose to keep quiet about mental health problems. And it’s one of the reasons Nash should be saluted for his courage in speaking out.

Nash expressed some reservations about the way in which his life was portrayed in A Beautiful Mind

In a 2009 al-Jazeera interview with a journalist, Riz Khan, Nash expressed some reservations about the way in which his life was portrayed in A Beautiful Mind. Most significantly, he objected to the fact that in the film he is shown as remaining on medication. Indeed, in a scene set around the time of his Nobel nomination in 1994, Nash’s character, played by Russell Crowe, explicitly credits his recovery, at least in part, to newer medication. The truth is that Nash stopped taking any medication in 1970. The line is a fabrication, and a conscious one.

In Sylvia Nasar’s book with the same title, on which the film is based, it is clearly stated that Nash stopped taking medication in 1970 because of the way it blunted his intellect. The change was apparently made because the screenwriter, Akiva Goldsman, whose mother was a prominent psychologist, was worried that the film might persuade people to stop taking their medication. There were also rumours that the National Alliance on Mental Illness put pressure on the filmmakers to include the line about medication. Certainly its press release at the time of the Oscar nominations praises the film for communicating “important truths” such as “the vital role of medication in treating the symptoms of schizophrenia and the risks of discontinuing medication”. Whether the rumours are true, I can’t say, but what’s certain is that the truth of Nash’s experience, the way in which he struggled and ultimately succeeded in using the power of his rational mind to overcome his delusional thinking, was replaced with a straightforward lie. And whatever the rationale behind it, the wholly disingenuous use of Nash’s recovery to promote the use of anti-psychotics is to my mind unconscionable.

It would be a huge shame if Nash’s voice were to be lost beneath the cacophony of others seeking to use his experience to further their own agendas – not least because what he had to say is so insightful and interesting.

In a biographical essay, written at the time of his Nobel win, Nash described sanity as a form of conformity, and one about which he maintained a degree of ambivalence. “So, at the present time, I seem to be thinking rationally in the style that is characteristic of scientists,” he wrote. “However, this is not entirely a matter of joy, as if someone [had] returned from physical disability to good physical health. One aspect of this is that rationality of thought imposes a limit on a person’s concept of his relation to the cosmos.” There can be no doubt that to talk in such terms requires both honesty and tremendous courage. The question is whether we have the courage to hear him.