Stigmatizing Effects of the Psychosis-Risk Label

Study examines the effects on participants of being told they are at risk of developing psychosis.

Bernalyn Ruiz
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A study recently published in Schizophrenia Research looked at the effects of the clinically high-risk (CHR) for psychosis label has on young people who are diagnosed. Individuals across three large east coast cities were qualitatively interviewed regarding their “mental illness status” and what they have been told about their status. The results suggest that the psychosis-risk label is one of many labels that patients identify as stigmatizing, but that being told by a provider that one is at risk for psychosis increases the stigmatizing effects of this label relative to other diagnoses.

NIH Doctor discusses test results with the patient. (Flickr)

There has been a large movement in support of early intervention for psychosis. The push aims at identifying persons (often youth) who are showing symptoms of initial psychosis but do not meet criteria for a psychotic disorder.

Previous research has shown that when individuals are informed of their psychosis risk, this can bring relief, encouraging health-promoting behaviors. However, can also result in stigma from receiving an additional psychiatric label. Researchers have pointed out that communicating the clinically high-risk status to youth has potentially negative effects.

As patients can experience stigma that results from being told they are CHR (labeling by others), persons may also experience self-labeling when they think they are CHR. Research has demonstrated that self-labeling is associated with increased stigma and worse psychological wellbeing. Research suggests that only 30-35% of persons identified as CHR will go on to develop psychosis. Therefore, roughly 70% of those given the stigmatizing label will never go on to develop the first episode of psychosis.

To date, no prior research has examined the effects that receiving a CHR label from a psychiatric provider has on youth. In an effort to examine the potential stigmatizing effects of this label, 148 individuals who met criteria for being CHR were interviewed about the stigma they experienced from others labeling them and from self-labeling. They were then asked whether the labeling of others or the labels they placed on themselves had a greater impact on them.

The questionnaire consisted of three main components. Participants were first asked “Has anyone told you that you were ‘at risk for’ of ‘developing’. . . ” either depression, anxiety, bipolar disorder, psychosis, or schizophrenia. Then participants were asked, “Do you think you are ‘at-risk for’ or ‘developing’. . . ” either depression, anxiety, bipolar disorder, psychosis, or schizophrenia. Lastly, participants were asked, “[Among the condition(s) which they were told/think they are at risk for. . . ] What had the biggest impact on how you see yourself?”

The sample consisted mostly of males in late adolescence and was more than 60% white. More than 70% of participants met criteria for one or more comorbid disorder. Participants most often endorsed being at risk for or developing depression and anxiety rather than psychosis, schizophrenia, or bipolar disorders. Only 27% of participants identified psychosis risk labels as having most impacted them.

The majority of participants identified nonpsychotic disorders, rather than psychosis risk, as having the greatest impact. However, those who identified themselves as fitting the CHR label had an 8.8 increase in the odds of the psychosis label having the strongest impact. Being told by others that they were at psychosis risk was associated with a 4.0 increase in odds that the psychosis label had the greatest impact.

The authors conclude that nonpsychotic disorder labels have a greater impact on individuals identified as at risk of developing psychosis. However, being told and thinking they are at risk of developing psychosis increases the effects of the psychosis risk label. The study highlights the importance of understanding both self and other labeling and may inform early intervention efforts.

Additionally, within this study, non-psychotic labels or symptoms had a greater impact on individuals than intermittent psychotic-like labels or symptoms. The authors hope that “understanding of how self-labeling and labeling by others contribute to how CHR youth see themselves could help guide the process of how psychosis-risk is conveyed to youth across specialized CHR programs.”

 

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Yang, L. H., Woodberry, K. A., Link, B. G., Corcoran, C. M., Bryant, C., Shapiro, D. I., … & Crump, F. M. (2019). Impact of “psychosis risk” identification: Examining predictors of how youth view themselves. Schizophrenia research. (Link)

40 COMMENTS

  1. Am I to presume these studies simply pronounce you at risk for psychosis without explaining the things you can do to prevent it from actually appearing, such as avoiding alcohol, stimulants, hallucinogens and ADHD drugs, keeping regular hours, maintaining junk free diets? Or are you simply telling your at risk population that florid psychoses will simply leap out of the shadows (gotcha!) no matter what you do, if you aren’t lucky? Or are you to prevent this by becoming a doped up zombie through the agency of preventive antipsychotics (zombie and free!)?

    • Except both the antidepressants and antipsychotics can create “psychosis,” too, via anticholinergic toxidrome.

      https://en.wikipedia.org/wiki/Toxidrome

      I will say I’m glad to see the author pointing out that they are “labeling” children, not “diagnosing” them. But I believe we need to get the “mental health” workers away from the children. Because grown adults stigmatizing children with made up and “invalid” DSM disorders is really downright evil.

      I also think a definition of “psychosis” should be made, since my former “mental health” workers thought dreams, gut instincts, and just thinking was “psychosis,” according to their medical records. And that’s a definition of “psychosis” which means all people are “psychotic,” making that term meaningless.

  2. young persons today are at risk
    for pre-diabetes….if you have pre-diabetes
    you are at risk for depression…we are not
    eating healthy….we need to think about
    prevention without using any prescribed
    medications or any street drugs…PREVENTION….
    also think about nutritional psychiatry…not pills..

  3. Being told you are “at risk” would, I imagine, produce a great deal of fear and worry in a person, causing them to have thoughts and take actions they otherwise would not even be thinking about, all based on fear and worry. So I’d call it fear-mongering, which is a most common strategy for throwing someone off kilter, which is disempowering, and makes them easier to control and manipulate. That would be the harm done here, leaving a person vulnerable to more potential harm down the road.

    • Alex

      In 2011 the GP that was regularly seeing me suffered a psychosis himself, and was asked to leave the GP Surgery I was attending in London. This was the GP that had put my name on a SMI register without interviewing me or or gaining my consent.

      By rights he should be on a Severe Mental Illness Register himself – but I doubt he is.

      I saw a blog of his on “Pulse” GP webzine where he described his breakdown as stress induced “burnout”.

      (When I had to completely stop medication it didn’t affect “my nerves” as Seroquel at 25mg per day dosage is not psychotropic – and is only prescriptive for off label purposes).

      • Thank you for sharing this, Fiachra, you sparked a few thoughts in me here.

        “Psychosis” = burnout, I can see a relationship here. I put the p word in “” given its ambiguity and variety of interpretations, including total dismissal of the existence of anything like this could possibly be, which is fine, it’s a belief.

        But burnout, I believe, everyone would understand in the same way, and I do not feel anyone could deny its existence, given it is a universal phenomenon. At least I think it is. Who doesn’t burn out at one time or another? Part of life’s lessons, I think it’s a passage.

        Although I’m sure that not all burnout would qualify as “psychosis”–that would be a matter of comparing personal testimonials to what the burnout manifested, what would make it “psychosis,” exactly, and this would need to be done without it being a list of “symptoms,” that would give it clinical relevance, which I do not feel it has. Still, I do think “burnout” would be an inherent part of any experience called “psychosis” by anyone.

        But also, what comes to mind here is: why would one person be considered burned out while another would be “in psychosis,” if there experiences are more similar than different here?

        In your case, Fiachra, based on what you say, this came from a clear and direct projection from this GP. If the two of you were comparable in whatever was manifesting that caused the p label, then it should be called the same thing (burnout is the better of the two, I’m sure!).

        But regardless–if things were truly equal here, which they should be or there is inherent injustice and discrimination from obvious stigma and power abuse–either you were both experiencing “psychosis” or you were both experiencing “burnout.” Why one explanation/label for you and another for him? That sounds like class division to me, and marginalizing. ILLUSION. It is false because he is lying–at the very least “misleading” in a way that to me, it’s the same as lying. It is deceitful, and for his own personal and professional agenda, to cover his ass in order to ACCOMMODATE stigma and prejudice. That’s how I see this, and it is a big problem.

        Such confusion and bullshit projections and basically cover-up! There would be no room for truth in that guy’s reality, would be my guess. That is dark. And to me, that’s psychiatry, pure and simple. I know this is a GP, but I’m sure his psychiatric partners in crime against humanity were just that.

        Good to raise self-awareness so we do not reach that point of burnout. But it is a potential for anyone who is a human being, and I believe it is inevitable, so that we do grow in this regard. So much to learn when we allow ourselves to get to burnout, and then recover and build ourselves back up with new awareness. I’d like to meet one adult in the world who has no idea what it feels like to be burned out, on one level or another, and the effects this has on the mind and body. How to avoid this? How to learn from it? How to move forward from it? These are my questions.

        And btw, kids who are pushed and pushed and pushed beyond their natural process of evolution WILL burn out sooner than later, guaranteed. I think when we’re burned out and continue to push ourselves without being aware that we’re already burned out (that may be a “normal” for some people, at this point), that’s when things can only get worse, imo, and I do feel it can send the mind reeling into distorted thinking. That is A LOT of stress, and it affects us in all ways negative, how could it not? We have to notice we’re burned out and stop running on fumes in order to replenish our own energy, if that is to ever change.

        Without resorting to any labels or categories which divide people up falsely, I’d say the current epidemic is, indeed, burnout, which, in energy terms translates to “energy depletion.” Replenishment would be in order, most naturally. Everyone would have their own way of doing that, starting with exfoliating that which on longer serves. Paves the way for new skin, new light, new awareness, and a new paradigm, based on a new and broader perspective.

        That is the natural cycle of evolution. Out with the old, in with the new. Permission for this to happen, and trusting the process, is what brings ease. When we resist change–especially as the waves of change are occuring–we are in effort. That will cause burnout, no doubt.

  4. I’m glad I was a drunk as a teen instead of a pothead because it allows me to generally dismiss all the dire warnings and prognostications about long term psychosis risk for teens smoking pot.

    I’m pretty astounded that the genetics industry has been warning for years that giving people genetic risk information without counseling can cause undue worry about their actual level of risk. But we plaster warnings about psychosis and early intervention everywhere and make kids lives miserable with all the psychiatric fearmongering instead of just letting them be children.

    If we’re honest with ourselves though, childhood has been a myth for a long time, hasn’t it? We charge little kids with murder. We send kids to jail for not reciting the pledge of allegiance or for making a clock. We make them compete for everything because we live in a world of artificial scarcity so we introduce them to this toxic competition from an early age and subject them to it on a daily basis. We don’t provide the security that children need to grow up well adjusted. And then we shame whole generations for being products of the toxic environments we’ve forced them to live in.

    Fuck early intervention. My whole childhood was made up of this shit. If I’d have been born a decade later, I’d have been heavily medicated from an early age instead of just therapized ad nauseum.

    It’s time to let kids be kids again. Focus on making the parents and the environment better and the children will be a product of that effort. Focusing on kids with any amount of “early intervention” misses the target.

  5. I also think that on International Women’s Day, MIA missed an opportunity to present a blog about women and girls, and our incredible resiliency in the face of centuries of struggle (millenia?) for not just equality but for equity in a man’s world. The female experience has largely been pathologized, and here we are today, the one day the world stops to remember half of its inhabitants don’t have a penis, only to be presented with a study done mostly on boys.

    • “The female experience has largely been pathologized,” I agree. Being a stay at home mom, active volunteer, and artist working on her portfolio is considered “unemployed” by today’s psychiatrists, who apparently nose into your private finances or something, since I certainly never told them I was “unemployed.” Particularly since they made me late starting a new paid position, with their medically unneeded, for profit, forced treatment of me.

      Our society definitely needs to learn to respect women who raise children properly, and end up with very well behaved and intelligent children who graduate college with highest honors and also win a psychology award. Our society would be a much better place if all children were properly raised, rather than ignored and drugged. Stop drugging our children, DSM deluded, “omni potent moral busy bodies.”

      • I identify as an artist. Unfortunately, the medium I’m most skilled with has been too hard on my hands for several years now.

        The concept of a stay at home parent has been traded for the push for guaranteed childcare and birth to 16 public “education”, as New York is attempting to implement. I think that abdicating responsibility for raising one’s children to the state has been one of the worst mistakes pushed by liberals.

  6. What is psychosis? Just another made up word. No measurable chemical , blood test, Xray, MRI or whatever.

    If there is no psychosis then they can’t push there fictional cure, the anti-psychosis drugs, that they call medicine.

    If they can’t administer medicine, are they doctors?

  7. Psychiatry is a nocebo by advocating the myth of “mental illness”; a nocebo promotes negative health outcomes through negative thinking (consistent with how a placebo promotes positive health outcomes through positive thinking). Testing for “problems with living” that are intended to predict “psychosis” (increased “problems with living” pathologized by psychiatry) creates a “self-fulfilling prophecy” that harms health- real (physical) health.

    • Yep. After 3 weeks on maybe 8 hours sleep thanks to Anafranil I was finally allowed to cold turkey off it.

      I needed sleep and still couldn’t think straight. The good “doctor” cheerfully told Mom and me I had classic schizophrenia since the “medicine never did that to anyone.” Hearing that sent me into full blown psychosis.

      My old life ended then.

    • Absolutely true, Steve. Our “mental health” workers fraudulently claim, with zero medical evidence or proof, that people have “lifelong, incurable, genetic mental illnesses.” How could one steal more hope and respect from a client, by spewing such lies to their clients’ families, than that?

  8. “Psychosis risk label”

    I refuse contact with and treatment by any psychiatrist, psychologist or other mental health practitioner as these practices, according to my philosophic and/or religious convictions, do not adequately or properly diagnose and such diagnoses can constitute a false accusation about my behavior and/or beliefs and practices, and are stigmatizing and therefore a threat to one’s reputation and physical and mental well-being. Any of their treatments, given against my expressed wish, are an intrusion upon and thus an assault on my body and constitute, in my view, criminal assault.

    I maintain my right not to have any psychiatric evaluation or diagnosis based upon the Diagnostic and Statistical Manual of Mental Disorders (DSM) as such diagnoses are unreliable. According to Allen Frances, who was chairman of the fourth edition of DSM, “There are no objective tests in psychiatry—no X-ray, laboratory, or exam finding that says definitely that someone does or does not have a mental disorder.” (“Psychiatric Fads and Overdiagnosis,” Psychology Today, 2 June 2010.) Additionally, the DSM system is not scientific. It’s own editors state that “there is no assumption that each category of mental disorder is a completely discrete entity with absolute boundaries dividing it from other mental disorders or from no mental disorder.” (DSM-IV, pg. xxii)

    Such codes and descriptions should not be entered into my medical records as this unreliable and unscientific information will remain in my records and may wrongly influence any future medical treatment I might receive.

    With above said if for some reason I am ever in a hospital bed with a doctor next to it like in the photo that is posted with this article I will simply explain I don’t take part in psychiatry and politely refuse to have any discussion on the topic of my mental health. I *might* try and hit them up for some valium or ativan so I can chill out if I am ever in the hospital with a physical problem but no way would I ever submit to an evaluation or even go along with the pre evaluation.

    My gosh getting labeled “at risk” is almost worse then getting tagged with an official label as “at risk” is even harder to remove.

  9. Who’s Psychotic

    September 1980 I’m “hospitalised” at the UK Maudsley Hospital – but without an admission procedure.

    Following a trip to see an Irish community worker,
    I’m “sectioned” by doctors from Kings College University for leaving the Maudsley Hospital without permission (and not taking “my medication”).

    I’m injected and transferred to Galway Ireland in November 1980 and a “MH Formulation” is dictated by a UK accompanying Doctor but written up and signed for by an admitting doctor at Galway.

    (On admission at Galway I’m judged as Well).

    I’m then independently interviewed by another doctor, and my account of my own history differs substantially from the UK doctors – one example being that prior to hospitalization at the UK Maudsley Hospital I had spent several months in Amsterdam Holland, but there’s no mention of Amsterdam in the UK History.

    After this I’m heavily medicated.

    On my records the Irish doctor that took my independent personal History disappears, and my Irish Consultant Psychiatrist rewrites the History in his own hand and redates it to several days later.

    I remain disabled and suicidal until I stop taking depot injection “medication”.

    In 1986 I inform my Consultant Psychiatrist at an interview that the drugs (Akathisia) were causing my disability and suicide attempts. The next time I meet him he informs me he is going away on sabbatical to Canada.

    In 1999 the original (1980) UK accompanying doctor (now a psychiatrist) commits suicide, and within six months the original 1980 doctor at Galway (who recorded my MH Formulation) (now also a UK psychiatrist) is barred from practising medicine and struck off in the next year. (He didn’t attend the hearings as he had already left Europe).

    I discover in 2012 that my name had been put on a Severe Mental Illness Register by my UK GP in 2002 (who suffered a psychosis in 2011 and had been asked to leave the GP practice).

    I made my complaints to his replacement and I demonstrated that in 1986 I had written to Galway asking them to send Adverse drug Reaction Warning to the UK concerning drugs that had caused problems, and that Galway doctors had sent over a negative account on me to the UK with ADR Warning deliberately Omitted. During these conversations my GP sweated so much that his shirt completely stuck to his body.

    My GP guaranteed me in writing that diagnosis had been removed. But when I spotted evidence of diagnosis remaining I challenged my GP in writing and He responded in writing contradicting his guarantee.

    I complained to the General Medical Council. They told me that they still judged my GP to be safe and this was what mattered to them. 3 months later my GP was involved in the homicide of a patient.

  10. Nocebo effects (effects resulting from ‘negative expectations’) can be very powerful. The following recent randomized study examined how the knowledge of a genetic risk can be physiologically more damaging than having that risk itself – a similar situation can happen for psychiatric conditions:

    Turnwald, B. P., Goyer, J. P., Boles, D. Z., et al. (2019). Learning one’s genetic risk changes physiology independent of actual genetic risk. Nature Human Behaviour, 3(1), 48.

      • Yes, it does, and they are relentlessness about it. And so many of us are mirroring back those negative expectations from psychiatry, based on experience and our own negative outcomes from said “services.” It will not kill them (I would hope!) to learn from what the mirror is reflecting back, rather than resisting it at all cost.

        Vampires are the ones who cannot see their own reflection–aka getting defensive, hostile, retaliatory, and shutting down communication when reasonable and heartfelt critical feedback is being offered, and especially when it is obvious to everyone that harm is being done, and the harmful behavior will not stop.

        Their survival depends on harming another, to drain them of life force energy. And then another, and another, and another…the vampire is the one who is dependent on others, they need the energy of another in order to survive. It is endless seduction and victimization, until the vampire is destroyed.

        That’s the only way (according to legend) to stop the cycle of vampiristic harm, to drive a stake through the vampire’s heart. In that vein, I just try to speak my truth of the matter as clearly and directly and precisely and reasonably as I know how–and then creatively when that doesn’t work. Feels good to say it, in any event, because it is truth.

      • That process of labeling and condemning a person to a life sentence of assured impairment and dependence also shows blatant ignorance about human beings and our natural processes. This is not thinking, it is negative social programming and conditioning. Which amounts to sabotage.

        • Yea – I agree Alex. By the way, I am not too sure what percentage of psychiatrists intends to deliberately harm people. I feel that the way psychiatrists are trained in medical school needs to be blamed more – i.e., students being told that it is all about the brain, to focus on treating the brain and nothing but the brain. Most of these doctors blindly abide by that advice focusing on the nervous system and thinking it is the only way to practice good science – but then there are also those psychiatrist that ‘think out of the box’- as we see at MIA…
          Anyway, this is my opinion.

          • Yes, I agree with you, Nancy. It’s the training which is misguided. Some would call the education “programming,” with which I’d concur. The conditioning is passed down, which I think is what we’re trying to stop–bad information to be replaced by way better information, true to healing rather than satsifying an institutional or political agenda. That would be my intention and goal, in any event.

            I was in training and MTF internship when my world began to turn upside down from the psych drugs I’d been on, and no one around me was any help, to say the least, and really quite discouraging, which turned into “demeaning,” which led me right into hopelessness. I eventually discovered and realized that the education was bad information and the skills of the therapists were seriously below par, and all of this could lead down a treacherous road for anyone, as it had done with me and so many others.

            While someone may not be out to deliberately harm another, when someone tells them that their actions are causing pain and hurt, and they argue, ignore, or turn the blame around, I can only call that toxic abuse. When the abusers have allies and not the victim, then it is systemic, and not good for anyone, regardless of having noble intentions. Even the most progressive ideas will not fly in a system such as this, since no truth can come to light in a toxic system. Information becomes corrupt, because that is the energy of toxicity–to destroy and sabotage, not to support and create. That’s how I see it.

          • I agree with what you are saying – their education is merely “brain washing” about the brain I suppose.. 🙂

            Sorry to hear about your difficult experience. At least you are lucky enough to have found hope now – many others have not been that lucky..

          • I’m completely out of all that, this was over 15 years ago and I’ve since moved on and enjoy my life thoroughly. I’ve done tons of healing in all sorts of ways, and have been a teacher and have had a healing practice for over a decade now.

            Part of my life purpose is to speak my truth about this. It was my path to take, and it has enriched me in all ways. And, it woke me up but good. As long as I have healed all that brainwashing (and social programming from way back), I am happy, at peace, and aligned with my heart, truth, and spirit. What more could I ask for? I’m here to encourage others.

  11. Psychiatry creates hysteria in society with its mythical diseases, it comes to the point of absurdity – “Who a at risk of psychosis?”. Who is sick of course. But there is a problem – those who are sick can not have high education, work experience etc. So you have to answer honestly – those who take drugs.