I Refuse to Die; I Am Not Leaving

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Psychosis is treated like a crime, and the sentence is social death.

There is no place in society for people like me. I’ve known it deep down for a long time, but I was ashamed to say it out loud. Having had a psychosis is treated as worse than having committed a crime. Few experiences carry as much stigma, and the shame doesn’t fade when the psychosis does.

For more than twenty years after my first psychosis, I was barking up the wrong tree. I believed the main problem was that psychosis was misunderstood. I thought that, at least sometimes, it should be seen as a spiritual or religious experience that goes beyond medicine, and not simply as a mental illness. I spent years trying to prove that nothing was wrong with me, and that I could do not only as well as those we call ‘normal’, but even better.

On the surface, between my ‘psychoses’, I look like a successful, capable person. I have lived in four countries, speak four languages fluently, have a PhD, am raising my son on my own, and have a job I love. In reality, every day is a battle, and the weight of performing ‘normal’ threatens to pull me under. What I really need is a break, something like a stay in a Soteria house, where people can go through a crisis in a calm, homelike place instead of a hospital. But instead of resting, I always chose to carry on. I felt I had to show everyone that I am capable, smart, hardworking and valuable. That I am ‘normal’. That I am enough.

But can I ever really prove it? Time and again, under extreme stress, I have experienced psychoses. They are short, and I have learned to find my way out of them at home, without a hospital. Shortly afterwards, against all odds, I am back in society as if nothing happened.

Yet coming back is not always welcomed. ‘How come she’s back, after posting online that she’s Jesus?’ ‘How dare she just carry on?’ I have seen the smears, the eyes that avoid mine, the whispering, and the hints that perhaps I should do what so many people with a serious mental illness are quietly expected to do: disappear onto benefits and never be heard from again.

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To be honest, for a long time I didn’t see any of this. I was too busy trying medication after medication, looking for one without crushing side effects, and working hard to keep my livelihood, wherever I lived. I refused to be put in the box of forgotten people, labelled with a mental illness our society cannot tolerate.

Now I see it. Some people don’t just misunderstand us; they resent us. You can hear it in remarks like ‘just wait until she’s ill again’, and in the disbelief that someone like me dares not only to exist, but to do well.

I am not alone in this. Look at Britney Spears. The world cheered when she won back her freedom, yet now many people mock her. She isn’t doing anything outrageous. She dances, she shows her body, she expresses herself, and somehow that is enough to invite ridicule. What I see is a 44-year-old woman who looks amazing and is finally living on her own terms. Her diagnosis seems to follow her everywhere, and so does the permission to laugh at her.

The worst part of having had a psychosis is not bad medication, or even being sectioned. It is the stigma. I didn’t expect it to be this strong today, after so many charities told us that mental illness is ‘just like any other illness’. Who still remembers Time to Change, the campaign run by Mind and Rethink Mental Illness? It closed in 2021. Heads Together, backed by the royals, faded from view too. And many of the celebrities who once opened up have gone quiet.

Did these campaigns change anything? For psychosis, they may even have made things worse. Telling people it is ‘like any other illness’ promised an understanding that never came. Nobody really knows what psychosis is or how to live alongside it, so the gap between the friendly slogan and the frightening reality was filled with shame.

Until recently, I was naïve. I thought stigma had eased, that people like me had paved the way, that there was finally a place for us. For me, my psychoses had become a closed chapter. It happened, I recovered, what’s next?

But many people can’t forget, and they can’t forgive. I have seen partners walk away from the parents of their children, friends disappear, families go cold, all because someone became psychotic. The shame is so strong that it turns into a moral judgement. I feel judged not for my illness but for my character, as if I wear a Scarlet Letter that says ‘bipolar’ and means I will never be enough, never fully loved or accepted.

The thing is, I am not dangerous in my psychoses. I start believing I have the powers of Jesus and post strange things online. The real damage is to myself. I give money away, far too much, and once that made me an easy target for a serious scam. But I am not violent. I don’t hurt anyone. And yet one strange post is enough. You are not executed physically, but morally. People look at you as if you are unworthy, ignore your calls, and treat you as an outcast who should stay silent.

Psychosis needs treatment; there is no way around that. So I put my own safeguards in place, such as an agreement that my phone and bank cards are taken away if I seem to be slipping. My psychiatrist and I have also agreed that if a psychosis comes again, I can go to a small, calm place he set up, much like a Soteria house, instead of a hospital. Treatment can be humane. What is not humane is the verdict that follows.

For years I chased the system from the wrong angle. Insisting my psychoses were spiritual rather than medical was my way of saying I was different, not sick, and that I could still thrive in a high-pressure society that prizes being able above almost everything else. I proved all of that. And still I have to call it a crushing defeat, because I am not judged by my achievements. I am judged by a few strange posts.

This matters beyond my own life. In countries where euthanasia for psychiatric suffering is allowed, people with mental illness are already part of that debate. I fear that people with psychosis, carrying this much shame, could one day feel quietly pushed towards it, and that society would call it compassion.

But here is the thing: I am also a rebel. Everything I have, I earned on merit. I am capable. I am enough. I matter. And I will not let those who look down on me decide how my life should end: dying of shame.

I refuse to die. I am not leaving.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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28 COMMENTS

  1. Your story reminds me very much of my own, which I have published in various blogs in Mad in America. I found that going into exile helped me overcome the psychosis that I endured in my home country, the USA. If ever you need a safe place to land, you are always welcome in my home in Québec.

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    • Emotional distress exists in manifold forms, but predominantly stems from painful experiences, not from verified physical pathology, hence it cannot rightly be viewed as illness subject to diagnosis and somatic treatment. To do so is to conflate metaphor with reality, which (as the articles by reputable researchers and psychiatric victims on this website amply demonstrate) often incurs terrible, sometimes irreversible harm.

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  3. How does one pivot, guide and respond from the rigors of the Academy, to realizing a relaxed social interaction, listening better if not more deeply? (While I was told I would need the Ph.D. if I wanted to teach or work in higher ed admin, the realities of continuous learning while accomplishing what institutionalized business practices frame as essential, people such as yourself, Dr. Netcthitailova create a presence. In relocating 2 years ago, I informed management I moved to live not die. And the creativity keeps emerging with hopefully stronger expressions. The Beehive along with the Queen are incredible. Talk about a community that sticks together! The horsepower they release to keep the heat turned on is amazing. But wait until Spring!

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  4. I realise it’s extremely difficult to face given the terrible things you’ve been through and you probably don’t wish to hear this, but there are no medication drug options that work at least in the long run. With each change your body is placed into another battle to get rid of the toxin and change itself to adapt. What happens during this and after is called mental illness. It’s a hell-go-round.

    If in your position I would do everything I could to support and help my body biosynthesize GABA and avoid everything that harms it and stay firm with it.

    Probably it’s not going to be something helps you soon, but it’s what keeps ourselves level. Eventually it may improve matters.

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  5. It is with absolute delight (and perhaps uncommon perspective/understanding of that of which you write, and the lacks and wonders of science, society and culture), that I happened upon (without searching and actually clicked on, much less that I am posting a reply into this world of AI—twinge of humor implied) and have read and relate to your article (on a beautiful day in Oregon, over coffee, as I get on with my day, amidst the fray). Makes me wonder if youve looked at the work of Dr. Gabor Mate (and or Dr. Richard Laing, and specifically the chapter “A Ten Day Voyage”, in his 1971 book The Politics of Reality?). If you are ever in Oregon, it would be my pleasure to treat to a nice dinner out. All the best and as they say, Keep on keeping on (as there is always at least some beauty in a day:)). Thank you this work, amdist the shocking (and apparently still unshared:) reality of what it is to be human (the most pathological of diagnoses:)), sincerely yours, a different type of Doctor (Juris, who is not taking new cases after 32 years in practice).

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    • Thank you so much for your comment and invitation. If I plan to go to Oregon, I will let you know:)
      Yes, I know about the writings you mention. I don’t think I have a mental illness. I have extraordinary experiences. However, unfortunately, it is not tolerated by our modern society, so I live or survive against considerable odds.

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  6. I love this Anne: “I look like a successful, capable person. I have lived in four countries, speak four languages fluently, have a PhD, am raising my son on my own, and have a job I love.” I would add Also I am on brink of madness, frankly damn near it, and I wouldn’t survive being lit up as someone they’re fixing this time around again, which was the last time still being that there’s some profit from having gone….

    My family, my wife had me put away, because her mother didn’t have a clue how to be like either of us, you and I, was supposed to be involved with acting, not legitimizing microcosms made up like orchestrated bombs, or have you heard or seen of her work?

    And what I haven’t told you, it goes on. Johnny Depp tries to have made out who not to or two be Jesus (he funked out the Urantia Papers), which we all know he knows nothing regarding our knowledge of our so true friend. I choreographed music of Logan Lerman (Richard Strauss), the word game. As in Are Eyes Fair!? Son…. (trying to wake up Frida Kahlo or is it Pocahontas, after she was my Grandfather Isaac).. or is it “Are eyes fares on?” Or the rest of it from Arise fair son, and kill the envious moon. Or to make it further: Are I see fairies on Ezekiel dare envy us moony…. Till Eulenspiegel language. Lots of fun.

    I have a friend Youri Egorov, and he’s just like you as being Jesus, not that he’s a collective soul. Nor Jesus, nor you, not I. Youri, you, taught me legato, again was made out to be too soon, the whole conservatory knew I had found a real teacher, and the stupid fool making out he was who was from one being on staff where he held a position and paid for, tried everything to compensate for what wasn’t within him. The whole country actually. Given a gift from heaven, and voila, instead of giving him the sensitivity he showed by as himself: the only one as pianist that truly could be true to their word “lief.” More of it. Couldn’t go to the Concert Gebouw or another creep who hands out tickets had blasted me with hate when Youri said I could just have what they expected him to take being that he was also on that series. A ticket. Didn’t even have to get it from a police man for breaking the speed limit. Got there, ticket was available. Again, the same guy can’t do anything but hateful pestering, which he had started years ago, almost five. More… Horn player telling me that Youri would just jump on his fast mobile, rush through whatever, and wouldn’t help with nothing. Was completely not true. I gave Youri a place, same as Jesus, the calm that he gave me. Sometimes being on the planet you remember everything: the soft moist air, the sound of the canal water, how gently and relieved Youri was, to close the door without it being an exit nor I one who left, knowing he finally could be what he was meant for. And he was. And he did. I suppose because when forced to play a concerto he loved so much, he wouldn’t present it for what they made it out to be, tucked off to Belgium to be with the princess or proxy that he was architect for the Taj Mahal of music for, the whole time he being here could! Skipped the rehearsal, banged it out for the perverts. Then: nothing with that orchestra which found him unprofessional until he was so sick of them he took himself away……. And he gave me multiple lessons, for nothing but the love of music, and sharing with someone who had the same to give. To have that given to me, am I then to think it was a failure!? What is wrong with them?

    I’m supposed to be crazy!?

    Been crying every day for weeks, this is almost 30 years later. Took me that long. And Piccini, https://www.lifestorynet.com/obituaries/lisbeth-lilly-lipke.29513#memories and Paganini https://obits.mlive.com/us/obituaries/grandrapids/name/catherine-bouwsma-obituary?id=8664629 and the two who put together Schumann’s Kreisleriana, both warehoused by Lake Michigan drugged into having no one but me to keep what was given to me to give to them and me being them keep it for the love of art, and given it stays. Who else? I could go on for quite awhile. Saint Nicholas, as well. Paganini’s brother. Was concert master of the youth symphony in this city. Put on the radio. All supposedly crazy. My mother was supposed to be demented, instead Jesus could take her up so she could stay, and could even remind me of stuff I won’t share in this macrocosm.

    Then I get stalked and harassed by the likes of Brad Pitt and Johnny Depp because they think they portrayed something regarding what my friends have been through. And they both act as if they can just jump in and be part of it.

    I’m alright now….. Thanks to you…… As well……….. And I am glad you are with us, hope to be your friend.

    Vattsa

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    • Thank you so much for sharing this with me, Vattsa. I’m sorry for the pain you’ve been through, being put away and losing people you loved, like Youri, who gave you music so generously. That gift was never a failure. I’m really glad my article meant something to you and that you’re feeling alright now. I’d be happy to be friends. Take good care of yourself!

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      • Anne, so much thanks I would have to turn over the planet to another sphere of existence, we’re overloaded with your kindness.

        There’s something else I forgot, in briefing through regarding Piccini, Pavlova, and not just any old impression of her, but she herself had been party to them putting my friend in the asylum. Like a dark cloud from hell. First they trespass into her house, then they call her case manager lying the guilt on the system, then there’s a chase scene, and thank GOD Tennyson came by and completed the new fashion “that disturbed look,” which only those from Kreisler had, before. He was in a truck. Really very nice guy, and actually got me into impressions, but that’s for later. First before trespassing, they made out a line from A Course in Miracles was insane, where it says that we are all the second coming, a professor heard this, where upon he decided there were grounds to imprison her in what caused her to leave them behind. The “professor’s” wife, and an apartment mate also were involved. And Pavlova had a work mate. It’s not the first time at all, she caused my favorite teacher to commit suicide as well, with some indecently stupid protest against who knows what, that the mice had more elegance than she did upon trespassing. And I wouldn’t take part in such humour, so they blasted poor Piccini with all of it, she came tracing herself past the speed of light across the street, upon trying to get away full clamp, her Achilles tendon chimed in as well, broke itself to show at the asylum it was up to her knees swollen from it, and where medical needs aren’t met they put her on what she wouldn’t know was anything to do with what it had nothing to do with, and viola, she was put back in. On my bike! It was locked. Then I turned into Harry Potter having to deal with the death eaters, the whole mob across the street that had asked me for tea and some cake (reasons weren’t mentioned). They came charging at me. Pavlova said in such a squeak that Lilly wasn’t taking her….. fill in the blank. Actually she used “medications” as a word. For THAT I told her that they didn’t work statistically or scientifically, where upon I left out institutionally. The whole crap followed. After the chase scene, when she had found a lift from a true friend to try to get away, and I passed Tennyson, because Paganini and me had time for a pause, and so came by. Beautiful guy! She ended up at her own house, the one they had trespassed into, where I couldn’t call the police, having told them I would stating that Lilly clearly didn’t want them in her house, where upon the wife of the professor said with snarky sarcasm “would you,” so I knew they’d lie to the police. So I didn’t call, to find an officer telling me I needed to move on when I discovered Pavlova AGAIN telling stuff to an authority she knew nothing about, and the policeman needed to get it all in. All Lilly said was: “He’s a really nice guy,” and arriving home, which was by then the 14th for that day, being quite homeless, and calling the police, I was told she had been doing stuff which she never had at all that day.

        I have to darn “someone’s sweater a bit more now…. Picky picky picky…… (he was told his wife had the snout of an African Weasel, that all she does is tattle on everyone, that her feet resemble Russian play lifts, since not having money for electronics they squeak and groan like……) I really have to go now though, luv……

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  7. Great article, Ekaterina. I am pretty confident that I would have been diagnosed with Bipolar II, maybe even Bipolar I, if I had come of age in, say, 2019 or 2023 instead of during the 1970s.

    I still think some pretty damn strange things, too, and I can get pretty grandiose. I was lucky enough to have 4 years of psychoanalysis as a teenager, so I’ve learned to tell (usually) when my grandiose ideas are spot on (15% of the time) definitely wrong or suspect (15%) or the usual situation, which is that I just have no idea… and hence, I should invoke the Prime Intervention for those who have extreme moods: Don’t make any big decisions.

    And as a psychotherapist, I am not shy about sharing that self-assessment with my younger clients who fear a particular diagnosis. As the late Mickey Nardo used to remind us on his blog, Boring Old Man, mental health diagnoses are supposed to be ENTIRELY and CATEGORICALLY different from mental health diagnoses. It’s just supposed to be a way of describing symptoms– even the term ‘psychosis’ should not be so loaded.

    A few things I connected with: Strange posts. Yeah, the ones people think are funny seem to be okay. The others, I’ve learned to delete before hitting the return key, or reserve for verbal communication with my closest friends.

    You also remind me: I have a friend with ‘borderline personality features.’ (My own diagnosis of them, though they have referred to themselves as psychotic.) I get VERY upset when this person stops contacting me and doesn’t responds to calls, texts or emails. I know I have to give this person space and not judge them, but man– as a human being, not a psychotherapist– I WANT to judge them, want to cut them off, want to say mean things. That is only because I feel hurt, I feel threatened. Sure, their behavior is concerning, even inconsiderate– and, if we do resume contact, I can make gentle, constructive critical comments. But thanks for helping me remember that, as we say in AA, we do not shoot our wounded. The healthier and more painful thing for me to do is to tolerate the ambiguity.

    But perhaps the most inspiring part of your post is about your psychiatrist allowing you to stay in a safe environment that is not a mental hospital. I have managed to convince the staff at the school where I work to do something similar for some students who are in crisis, and are having ‘psychotic’ symptoms, but are not a danger to themselves or others: Use temporary housing that is available, set up a check-in schedule for them. And this has worked, at least the three times we’ve done it.

    That’s how it was done when I was in college: When my emotions became too extreme, I could check into the infirmary (beds were always available) for a few days. I did this at least twice, maybe three times, so I wouldn’t yell and scream and break things in my room. It worked then, too.

    Thanks again.

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    • Yes, yes, a safe environment where one can process mental distress, makes a huge difference. Unfortunately, in the hospitals it is purely medical approach, based on pills, but many people might need something different, such as indeed, a space where they wouldn’t feel the shame that our society bestows on those who are labelled as ‘mentally sick’ for life.
      Thank you for your thoughtful comment!

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  8. The stigma is real. It affects everyone involved. I also have another perspective. Having been forcefully incorporated into someone else’s delusions and psychosis which necessitated my calling emergency services, (thank God for Siri), I am relieved that medications exist to prevent the excesses of mental illness. It was frightening being held against my will by someone I love who was completely detached from reality. My only regret is that I didn’t call earlier while the psychosis was kindling. An early intervention would have prevented the situation leading to criminal charges.

    That morning I reached out to my son who is vehemently anti-psychiatry. He told me his Father’s behavior “could not possibly be a threat to me” So I delayed seeking help.

    I had no way of predicting where things were heading that morning. I know the emergency response and hospitalization were traumatic for my partner. In the aftermath we have both been shunned by family and friends.

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    • Oh no, shunned by family and friends? This is so painful. And unfortunately, happens quite often.
      I have been very lucky in this respect. My mother always stood by me, no matter what. And most of my friends stayed. The ones who left, were not real friends, and it is their problem, not mine.

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    • Eats Shoots and Leaves, a book regarding such events, which you might need help with expressing nonver’bally, is really fun to get in one’s digestive remarks. I know I’m picky, seemingly being sarcastic, but no, I’m just where I come from. Very nice, is your post, but without a comma here: “My only regret is that I didn’t call earlier while the psychosis was kindling. An early intervention would have prevented the situation, leading to criminal charges.” this could have meant that you were held accountable and jailed. Since you need to keep yourself available to take charge when such occurs. What you left for us was: “My only regret is that I didn’t call earlier while the psychosis was kindling. An early intervention would have prevented the situation leading to criminal charges.”

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  9. Thank you very much for your incredible article. I can feel your courage, power, self love and resistance in almost every sentence. It’s very inspiring to me and very helpful to continue with my own journey. I am a journalist who has experienced 5 psychosis and more than 10 controlled psychotic episodes where I could recognise my psychotic thoughts and let them pass without following or executing them. At the onset of my first psychosis I realised something wasn’t right and called my adoptive parents. They never came. They let me wonder the streets of Berlin for nights, sometimes weeks during a period of more than 5 months before the police picked me up from a bridge totally exhausted, anxious and panicking. I was relinquished after birth by my biological mother and spent two years in a children’s home before being adopted. With my adopted parents I could never talk about the trauma I was born with. After meeting my biological mother at 28 she said she needed a break and I never heard from her again. My adoptive parents never asked me how that felt or what that meant for me. After my biological mother unexpectedly passed away I experienced my first psychosis. At the moment I am writing my complete story that I will publish online in English German Dutch and later Spanish. Your article resonated so much with me because I refuse to be discarded as if I am trash. My adoptive mother only says I am very sick but refuses to talk about my biological mother and what happened to me. But I am still a human being with feelings and emotions. And I am fully recovered. The stigma and social isolation after psychosis are far more damaging than the psychosis itself. I am tired of all the campaigns that promote we should talk about mental health. Because if you try to all you get is rejection, laughter or pure silence. I wish you all the best! And again thank you very much for sharing your story! I am living in complete social isolation for 3 years now. And reading your story is inspiring me to continue writing my own. I was a professional journalist for 7 years, chief editor of a magazine for 7 years. I have been doing 7 years of research on psychosis, antipsychotics, relinquishment and adoption and the correlation between trauma and psychosis. I have published opinion articles in national newspapers but they never publish the follow up articles in which I want to explain my trauma and the social stigma. Therefore I have decided to build my own publication platform. Kind regards, Joep Schrauwen.

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