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The idea is simple. Let’s teach each other about each other. About our health and wellbeing. And about our illnesses. Furthermore, let's dispense this knowledge to our surroundings. Because an illness changes with perception, and this perception can make all the difference in the way we live.

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Stories

Emily W.

Neha Kinariwalla

My brother and I have wildly different personalities, and wildly different interests and aspirations. We really have nothing in common at all, save for three crucial factors. One, a shared history of a very difficult childhood. Two, an unspoken and unconditional love for each other. Three - which my brother arrived at first, and I, out of admiration, later adopted - a firm idea that this concept of mental health ‘stigma’ is anathema.

My brother and I have been diagnosed with all sorts of mental ailments over the years. Chris is a rigorous biochemist. He appreciates the validity of mental health categories of neurodegenerative disorders, and identifies with them willingly. I, an historian, consider much of what underpins the concept of categories to be social construct, preferring to describe myself as someone who has a few weird personality tics in response to the extraordinary pressures of my formative years. I sometimes wonder whether the way psychiatrists treat us reflects this. Whereas Chris has been diagnosed with so many things that I now just refer to him affectionately as ‘Disordered’, I have had various suggestions floated by multiple counsellors and doctors, and resisted being exclusively defined as any of them. Finally ‘PTSD’ was proposed, and that seemed like the label which fit best with my experiences and symptoms, and which didn’t sound so terrifying and stigmatic as some of the other options which had been bandied about. I liked the psychiatrist - it’s important to find one you trust - and we went from there.

There are no two ways about it: it sucks. PTSD, or however I feel like defining what I’m going through, is really, really hard. It makes you feel very isolated, out of control of your actions, deeply insecure, and painfully reflective. In Michaelmas 2013 I got to the point where I was no longer functioning and safe to be on my own. Worcester College had been my halcyon environment, my hard-fought-for eye of the storm. I had to leave it because although I had dragged myself, with some help, out of my untenable previous situation, my mind and memories had accompanied me to Oxford. I called my brother to break the news of my suspension. The conversation started like this:

‘I had a Hearing with my tutor and I’m being excommunicated.’

‘Oh dear. Did your tutor have one of those red rubber INSANE stamps and stamp it on your hand? (prolonged laughter) God, that would have been great. We should get you one.’

By making Oxford sound mad, rather than me, he offered me a little bit of my own agency back, and made an intolerable situation just about tolerable.

When I arrived at my aunt’s to celebrate Christmas that year, I was a shivering ball of sadness and fear, liable to break into uncontrollable distress at unpredictable moments. As my father and aunt were having a worried discussion over my head as to whether visiting our other relatives would overwhelm me, my brother barged in with, ‘Jesus, guys, she’s not that insane, she hasn’t even bitten anyone for weeks!’ -He grinned at me and I gave a small smile back- ‘But we could pack a spare straitjacket just in case.’ And so we went to see the extended family. Whilst there, my wonderful, sympathetic cousin held my hand and soothed that ‘the fuse was bound to blow. You’ve have such an intense, crazy year! …Oh God, I mean…’ She stuttered and my brother roared with laughter. And I smiled again.

So that was how my interstitial gap year began, and pretty much how it carried on. I was confronted with uncomfortable situations, my brother ridiculed each of them, and, ever so gradually, the stigma of being Disordered went away.

There are several aspects of PTSD for me. Some of them you can’t really joke about. I often have nightmares. I tend to classify people as ‘safe’ or ‘dangerous’, and there is nothing in between: I either like people, or I tell them to stay the hell away from me. Certain movements trigger extreme panic, flashbacks, and fear that takes the form of stabbing pain. This happens especially when I’m drunk and my guard is down. Certain facial expressions, oddly, can cause me distress. A particularly unusual one is that sometimes my own face is a trigger. I had a very damaging relationship with my mother, and every now and then, whilst looking in the mirror, I get a glimpse of her, and even that can cause panic.

PTSD is difficult to cope with in a lot of those situations. But when I can, I try to channel Chris, and see the funny, ridiculous side of things. A few weeks ago I was obscenely drunk in the Purple Turtle, something triggered, and the paramedics had to be called to coax me back to stability (-thank you so, so much to the friends who were there, who were so wonderful to me).  A year ago this would have been the most shameful, humiliating situation I could imagine. These days, I’m ok with it, because when I think of that occasion, I see that the Purple Turtle is horrible and that a PTSD episode is really the only rational reaction to such a gross club. My friends understood, my brother laughed, and after a couple of days it was nothing but an anecdote.

There have been occasions where Chris and I have been among friends, forgotten social mores, and shared stories about distressing situations which we have somehow turned into hilarious anecdotes. We roll around with laughter whilst our companions blink a lot and exchange alarmed looks. Sometimes I feel like we should tone it down and respect other people’s sensibilities, but I’m starting to realise that that is how one self-imposes stigma. My brother decided that there wasn’t going to be any stigma around us and our personal stories: in fact, he decided to ridicule the very concept of stigma. For a while I watched him in awe. Then I converted. If it’s not a big deal to us, we might as well encourage other people through our actions that it shouldn’t be a big deal to them, either. It’s just life. Just things that happened. They don’t need to be taboo if we don’t want them to.

There are many different roles to play in helping someone with a mental illness. I have had stoic, sympathetic friends stay up to hold me whilst I cried through the night. I have had kind, encouraging friends who have hoisted me up by the armpits and insisted that I am strong enough to keep going. And I have had brave, gentle friends who have confessed their own insecurities to me, to stop me from feeling so alone. I am intensely aware of how fortunate I have been in the support I have received: it has been a great personal journey from a conviction that I was fundamentally unlikeable and unlovable, to a buoyancy of love and gratitude.

But my brother helped me most. He played the role that most people would not dare to play, for fear of diminishing and making light of a difficult situation. It takes inordinate skill. Chris successfully parodied PTSD, by drawing attention to other peoples’ discomfort with it, and by rewriting scenarios to tease out the entertainment. He could do this because he conveyed an unspoken, constant, and obvious love for me. Underneath all of his words was the message, ‘What you’re going through sucks, but you’re the same at heart and I like you anyway.’

What I am hoping to say in this article was better said by Eleanor Roosevelt: ‘No one can make you feel inferior without your consent.’ You can choose to feel constrained by stigma, or you can try parodying it. It’s a very difficult thing to learn – I’m still learning – but keep it up. Try to recognise that the fault may not be with you, but with wider social mores, and that by being you, you can change them. Be loud and proud about who you are. If you don’t like mental health labels, don’t use them. They are not binding; they were constructed and named by other, fallible humans.

The other thing I really wanted to say was this: thank you, Christopher Wayne, you ridiculous, Disordered human. You are the greatest person I have ever met.

Story collected by volunteers of the Mind Your Head Campaign at the University of Oxford