“What Matters to You?” – An Antidote to “What’s Wrong” and “What Happened”

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I was recently asked by the founder of the new AntiNormality Club to suggest something that might improve mental health services in the UK. I’m usually ultra-cautious about answering questions like this. I don’t consider myself an ‘expert’ and I don’t think there are any easy solutions to such a difficult and enduring problem. However, I’ve spent years criticising mainstream services, as well as problematising some of the alternatives proposed by critical professionals. And I remembered one of the key points in the Lesbian Avengers manifesto — “if you disagree with a proposal, instead of tearing it apart, propose an alternative.”

As many regular MIA readers will know, the proposal to shift mental health discourse away from the idea of ‘what’s wrong with you?’ to ‘what’s happened to you?’ was introduced as a shorthand way to reframe mental health care from the so-called ‘medical model’ to ‘trauma-informed’ care. I wholeheartedly agree that we need to challenge the idea that there is something intrinsically ‘wrong’ with people that needs fixing. I also believe that a trauma-informed approach is essential to good mental health care. However, despite its laudable intention, ‘what’s happened to you?’ has turned into an unhelpful soundbite, too often parroted in unthinking and uncritical ways. As such, however useful it might have been, I believe it has outlived its usefulness.

Therefore, I suggested using a different question — ‘what matters to you?’. This idea is not especially novel, it is based on what many survivors have been saying for years. I mentioned this proposal in a recent article in Asylum magazine as a response to polarised debates about the use of antidepressants. When I shared this idea, colleagues seemed to find it helpful, so I’ve written this in the hope that others might find it useful too. First, however, I need to outline the problem it is designed to address.

What’s wrong with ‘what happened to you?’

The introduction of this question was intended as a reorientating shift, not a literal one. Advocates did not seriously suggest that people suffering with mental health conditions are simply asked “what happened to you?” (just as I’m sure defenders of the ‘medical model’ wouldn’t ask a client “what’s wrong with you?”). However, both questions speak to competing paradigms and contain certain assumptions which need to be made explicit. I’m sure regular readers will be familiar with objections to framing services in relation to what’s ‘wrong’ with us, so I won’t belabor that here. But what about ‘what happened to you?’

First, as many critics have pointed out, psychiatry and the wider psy professions have a long history of viewing past trauma as the root cause of mental illness or distress — most notably in psychoanalysis and social psychiatry. It is true that these traditions went out of fashion as psychiatry became more interested in how mental illness manifested through people’s biology and neurology and cognition. But the assumption that we are mad or distressed because something ‘happened’ to us has never been far below the surface. Of course, this doesn’t dispute its importance, but it does suggest it’s not quite the paradigm shift that was intended.

The assumption behind counterposing ‘what’s happened to you’ against ‘what’s wrong with you’ seems to be that either something is wrong with you (you’re ill), or something happened to you (you’re traumatised). This binary doesn’t allow for the fact that horrible things happening to us can make us ill and fails to appreciate the complex non-dualistic relationship between the mind and the body. In addition, both questions make unhelpful assumptions about people’s difficulties. Arguably, a focus on ‘what’s happened to you?’ merely privileges psychosocial assumptions instead of medicalised ones.

The assumption that we should always use the lens of ‘what happened to us’ can result in gaslighting people who feel their distress might relate to underlying physiological conditions. For example, we are finding out more about the acutely distressing effects of conditions like PMDD, a severe form of premenstrual syndrome. In addition, whilst there is strong evidence of a correlation between trauma and psychosis, some people experience similar conditions as a result of undiagnosed medical conditions, and understanding this may save lives. A singular focus on ‘what’s happened?’ can inadvertently lead to mental health professionals refusing to investigate the possibility of these factors. Moreover, psychologisation can result in unhelpful and even coercive interventions. For example, people who are distressed as a result of medically unexplained conditions like ME/CFS have been forced to undergo psychologised interventions such as ‘graded exercise’ which can make symptoms worse.

‘What’s happened to you?’ implies that the only reasonable justification for our mental distress is being able to identify difficult life events. People who experience depression frequently feel pressured to offer a plausible ‘explanation’ for their low mood and can feel even worse when they can’t link it to something that ‘happened’ to them. Of course, this is why the idea that something might be ‘wrong’ with us can be so alluring as it offers an alternative justification. But it doesn’t have to be either/or. Moreover, if there is nothing wrong with us, and it’s (‘just’) a normal response to our circumstances, it gives mental health services (or insurance companies) a convenient excuse not to provide health services or support. Increasingly, under-resourced services look for excuses not to provide health care and insurance companies find reasons not to pay out. Arguably, everyone experiences some kind of hardship in life, especially in this society, so why would health services provide individual support for wider social problems? However wrong this is, this is the current system people have to navigate.

In addition, both questions assume that understanding causation should always be our central concern. However, if we take seriously a Mad liberation or neurodiversity perspective, we’d be more concerned with creating better social relations and reducing suffering, exclusion and oppression. In other words, if we saw madness as a psychological difference, rather than pathology, we’d be less concerned with underlying causes and more concerned with challenging disablist and sanist social relations. Historically, a focus on causes has sometimes been used as a tool of oppression and pathologisation. For example, the psychoanalytic focus on so-called ‘refrigerator mothers’ causing autism, or the behaviourist focus on ‘faulty learning’ causing homosexuality or gender dysphoria.

That’s not to say that causation isn’t important, but it might not always be central to our concerns, whether we’ve experienced trauma or not. Even when it is, we shouldn’t assume that focusing on it is always experienced as benign and helpful. I would urge anyone to read “‘Trauma-Informed Care’ Left Me More Traumatised Than Ever by Wren Aves on the website Psychiatry is driving me mad. Unfortunately, her experience isn’t unique and shows how a relentless and uncritical focus on ‘what happened?’ can be (re)traumatising. Unfortunately, despite expectations to the contrary, just as being positioned as ‘ill’ is no guarantee of receiving compassionate care, neither is being seen as ‘traumatised’. Sadly, as that article eloquently describes, the consequences of this can be equally harsh.

Arguably, both questions position the person as a passive object rather than an active subject in their own lives. For this reason, some trauma-informed practitioners have suggested focusing on the next step — whatever is ‘wrong’ with us, or whatever ‘happened’ to us, “what are we going to do about it now?”

This brings me to the most fundamental problem. Both ‘what’s wrong with you?’ and ‘what’s happened to you’ risk sidelining people’s own understandings and solutions. They both assume that the professional knows best, whether that is a psychiatrist, a psychologist or a therapist (‘critical’ or otherwise). In contrast, Mad Studies scholars urge us to let go of attachments to certain ways of knowing and create alternatives that genuinely put users and survivors at the centre of their care and enable them to identify their own goals, priorities and solutions.

So what’s the alternative? I’m skeptical of proposing alternatives, especially simplified ones, as they can be too readily misused and co-opted. However, if we’re going to use soundbites, we might as well try to create more helpful ones that are less likely to be distorted in practice. Despite their limitations, they can be useful devices to communicate alternative ways of thinking and help to (re)orientate our focus. After thinking about this over many years, the best alternative question I’ve heard is ‘What matters to you?’ The following section outlines the advantages of this shift.

Why ‘What matters to you?’ matters

The idea of ‘what matters to you?’ places survivor knowledge at the centre and creates space for a range of responses and possibilities. It also acknowledges that what matters to us might shift over time. It allows for the possibility that ‘what happened’ is really important to us, and we may want access to support to help us address that. However, it doesn’t assume this is always the case — whether we’ve been traumatised or not.

What matters to us might be the spiritual or transcendental nature of our experiences. It might be employment, housing, work or welfare. It might be activism, solidarity and friendship. It might be all those things. What matters to us might be gaining relief through drugs (prescribed or not), self-injury, or other things that might help us regulate our nervous systems (whether they are deemed ‘healthy’ by others or not). Appreciating this allows us to explore the possibility of damage limitation and harm minimisation strategies (if that is what matters to us).

Therefore, ‘what matters’ centres our agency and survival skills, whilst considering our own understandings and circumstances. It draws on progressive end-of life care which doesn’t impose externally defined outcomes about a ‘good death’, but bases decisions about care on what matters to us at the end of our lives. It also draws on restorative justice ideas. For example, when planning restorative justice meetings, practitioners are advised to focus less on the details of the crime or harm (‘what happened?’), and more on what the victims want to get out of meeting the person who harmed them (‘what matters’).

‘What matters’ doesn’t assume that causation is central to our concerns — although, as I have stressed, it might be, and the question allows for that. However, if the causes are important to us, it doesn’t assume what these are (that either something is ‘wrong’ with us or that something ‘happened’ to us). Both, either or none of these might be important. In other words, whilst ‘what happened?’ is designed to reject the focus on ‘what’s wrong?’, ‘what matters?’ can include a consideration of both. For example, ‘what matters?’ allows us to demand physiological investigations which might be important to us. If we are trans, it might facilitate access to hormones or surgery — if that matters to us, or not if it doesn’t.

Finally, ‘what matters?’ is congruent with the idea of ‘being with’ and ‘accompaniment’ that survivors frequently say they’d prefer from services — an idea embraced by alternatives like Soteria. In the recent BBC Panorama Programme which exposed the abusive treatment of mental health patients in a hospital in Greater Manchester, staff didn’t appear to be using either a ‘medical’ or ‘trauma’ focused approach, but a punitive one. For example, in a scene where an underground reporter asked a nursing assistant why a desperate self-harming young woman was so visibly distressed, she didn’t reply that she was “ill” or that she was “traumatised,” but simply that “she’s a c**t.” Yet, what seemed to matter to the young woman was having her teddy bears with her, to give her comfort and enable her to self-soothe, something the hospital heartbreakingly denied her.

For all these reasons, ‘what matters to you?’ is entirely consistent with a trauma-informed approach to services. After all, this doesn’t assume that all service users will have specific trauma histories, but it does recognise the potentially (re)traumatising effects of interventions, especially when they are coercive and/or when they make assumptions about what is important to people, or what they need. For example, even if we have been traumatised, we might not want this to define us and we might not want the details included in our medical records. Instead, we might want to focus on what we need in the present or possibilities for the future.

Although the distinction I’m making may seem subtle or obvious, it feels important to emphasise. I’ve witnessed colleagues merely shoehorn ‘what matters?’ into their own beliefs and assumptions. For example, I’ve heard people say “We need to shift the conversation from ‘what’s wrong with you?’ to ‘what happened to you?’ and why that matters.” Whilst what happened to you might matter, this entirely misses the point of the shift I’m proposing. It also illustrates how difficult it can be to let go of attachments to particular narratives that might matter to us (but not necessarily to others). However, genuine trauma-informed care requires us to do that.

Whilst this shift begs more questions than it answers, that is precisely its aim — to open up possibilities, rather than close them down. Despite all this, I’m sure this would have its own problems. Like any idea, its effectiveness depends on the wider context in which it is applied — this is, after all, one of the problems with ‘what’s happened to you?’. The possibility that anything could matter to us requires access to a range of alternatives and expertise that might be impossible within the current context. But a focus on ‘what matters’ allows us to demand access to those alternatives. On the other hand, sometimes it will feel like nothing matters to us, and it is important to give room for that, and not to assume otherwise. Similarly, what matters to us may be considered harmful or even objectionable. However, at least it starts from where we are, not where services think we are, or where they think we should be.

To conclude, I’m under no illusions that this shift will solve the chronic underinvestment in compassionate, humane – and trauma-informed – mental health care. Nor does it directly address the damage that services (or lack of services) can cause. Wider and deeper systemic change is needed for that. However, I hope this modest suggestion might be a small shift towards focusing on the people who really matter.

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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.

18 COMMENTS

  1. This was a very thoughtful and creative piece. I have been struggling also with finding a better lexicon. And you bring up some interesting points in perspectives. And not just trauma but yes other experiences the human body but also every aspect of our environments we all interact with every second of every day. And in some cultures mind altering events were created though usually with long preparation time. Thanks for this.

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    • Sure, thoughtful because it’s conducted purely in thinking rather then perceiving and understanding reality as it is, but I wouldn’t call it creative, rather invented. Thought cannot be creative – it is by definition the past: past memories, past conclusions, past opinions, assumptions, and every kind of social conditioning. True creativity demands perception and silence of the mind, but egoistic machination is much easier. Just invent something out of the detritus of the past. Necessarily it will lack both truth and force, although we hardly notice anymore because all of social existence is drained of all truth and consequently of all force.

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  2. What a rash and unintelligent idea, to abandon the question of what actually happened to you. Because that’s where the actual social and psychological terrain is, in that question of what has taken place in your life and mind. And you instead propose ‘what’s important to you’, which is a question that appeals to the individual ego because it gives it a chance to express personality and agency, but has nothing to do with an understanding and therethrough healing of our problems.

    Mere opinion and theorization by egoistic grifters who just want to advertise themselves through an invented idea and argument accounts for the useless and distracting noise and nonsense of articles like this one, being basically vampiric on the suffering of human beings because you use the whole space to propose idiotic and destructive ideas because you never truth-test: you form mere opinions through clever arguments and promote them for your own egoistic purposes. And egoism is the universal disease that blights medicine and psychiatry and politics and our whole society, a disease of craven rats eating at the corpse of our destroyed social humanity.

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  3. It’s OK, the aliens are landing in Washington DC as we speak. I saw it on CNN. They came down in their huge silver craft and rolled down their walkway, these three multicoloured flashing aliens made of light. Then they said “take me to your dealer!” And an MSNBC commentator said “don’t you mean ‘take me to your leader’?” And the alien said “No. Dealer.” Which is proof you can’t blame Americans for taking drugs. You can only blame America.

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  4. I enjoyed this. Well written and thoughtful and thought provoking. Thank you.

    My only concern is that the article further illustrates the importance of ideology and dogma in the mental health industry. At a practical level a shift towards focusing on what matters to those in the patient role in the system strikes me as potentially helpful perhaps incredibly helpful to many. And yet…

    The very fact that a shift in focus and a deceptively simple change in approach could potentially yield significant results is to me more an indication of how important values and outlook are vital in the mental health system because…

    This is basically the increasingly dominant secular religion in today’s society. The suggested approach would be practical and humane and probably effective in obtaining what service users need….

    Because these are not medical conditions and because other ways of dealing with problems in living are largely unavailable.

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  5. Thanks Hel, I think its useful to say this. People often have different needs, which for me is what Hel’s essay is addressing and these need to be the focus, not the skillset and philosophy of the psychiatric or psychological professions. There may be people who benefit from medications, others who benefit from psychological trauma work and others who would benefit from other approaches which could be otherwise missed. ‘What matters’, involves the individual in working out what those needs are and how to meet them as much as possible in a non-hierarchical, non-powerbased way. At the same time its a delicate balance. Some people may be too dissociated or wounded to know what they need, so the effort is then to help them to feel safe and get to that stage as quickly as possible.

    For myself, I didn’t benefit from the medications and I wasn’t at all interested in talking about what happened in my childhood though no one asked me anyway. If there was anything that happened in early life, it was at birth before I was cognitively present and otherwise there was a cumulative burden of minor life experiences that built up inner pressure, but are not important to me now. I felt sidelined at a ‘what happened to you’ presentation a few years back, while completely recognising that it was very important to others. What happened during my episodes of ‘spiritual psychosis’ would have been useful to discuss but doing so once did take me into another episode. Even though I completely believe it can be helpful to do this, you need to establish deep grounding, embodiment & safety within someone beforehand.

    For myself, now supporting others, my focus is on a simple pragmatic, ‘what would be helpful to do’. We will talk about what they want to talk about but I may occasionally steer it to approach difficulties. We will share embodied practices to help the body feel safe, clear emotional intensity and regulate the nervous system and possibly do an emotional bodywork session. Equally though, it could be something else unique to that person, as Hel suggested with the person needing their teddy bear. Beyond this there may be spontaneous interactions / interventions coming from beyond the awareness of either person’s conscious minds, perhaps from a kind of crazy wisdom, which allow a person to move on from a pattern of being and thinking. I’m confident Carl Jung would have understood this as hints of it appear in his writing on therapeutic work. Hopefully Hel’s essay opens up a reflective space for how mental health care can be formulated in the future.

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    • I like your approach, especially the part about emotional bodywork.

      Talking imo tends to be too cerebral and ego centered, especially on the part of the therapist. On the other hand, breathing deeply while connecting with strong emotions while gently stretching, walking/strolling meditatively or even free-form dancing can do wonders as it releases pent-up feelings in ways talking someone cannot. Things need to be felt physically, not just talked about. Acupuncture and deep tissue massage can also be deeply restorative.

      But no matter what takes place the most important thing imo is for there to be a “non-hierarchical, non-powerbased” dynamic as much as possible if there isn’t, I think it’s bound to ultimately be counterproductive in the long over the long haul.

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    • Feelings need to be released/processed physically, not just spoken about.

      Emotional bodywork can result in much less needless wear and tear on the soul even when deep grief is accessed.

      In my experience, it’s far more helpful to focus on how my body feels rather than on how some therapist decides to react.

      Much better to leave words, ideas, concepts and personalities out of it, imo.

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  6. Very true that clients have different needs coming into therapy. Trauma informed therapy missed my Level One Autism and I struggled with trying to communicate with neurotypicals. I told them over and over that I was there because I didn’t understand mainstream society. I spoke of them being cryptic in their expectations rather than just saying what they meant. I told them that my anxiety didn’t come negative thoughts but from intense physical sensations caused by noise, bright light, too many people talking at once, crowds. I asked for support and strategies to lessen the stress I was feeling. Stress that came from feeling like I plopped into a foreign country, not because “something happened.” Nothing happened. Hours wasted and all the frustration hearing about trauma and not being believed when I said none of that applied. When too many demands come at me at once and it’s hot and the sun is too bright and blinding me and people are expecting something but won’t say what and expect me to just know and I get overwhelmed and you think positive affirmations and gratitude are gonna help? Time for a change. What happened to you is fine as a start, but when a client describes what is clearly autism from birth and tells you it’s not trauma or depression or low self-esteem or negative thinking, therapists need to listen and believe their clients instead of trying to be the saviors.

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    • “…therapists need to listen and believe their clients instead of trying to be the saviors.”

      I think that’s asking a lot from people who to a great extent are trained to listen more to themselves than to the people they are supposed to help.

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  7. Thank you for writing this and highlighting the reasons for starting Pharmaceutical “treatment”. This is the standard. Hundreds of thousands of people, including myself, can 100% relate.

    “Iatrogenic injuries” is important to highlight as well. I learned that term from BeyondMeds and SurvivingAntiDepressants a couple of years ago. Same with “informed consent” (which I never ever EVER gave ANY of the countless times since all the way back to 2012) and “Polydrugged”.

    Since 2012, Psychotropic Pharmaceuticals haven’t increased my quality of life whatsoever. They’ve done the exact opposite vis-a-vis side-effects and CREATING a chemical imbalance in my brain, nervous system, endocrine system, digestive system, etc while on the drug and in withdrawal/discontinuation.

    My “depression” and “anxiety” was 100% environmental due to modern-day society and inadequate parenting from generational trauma. Just like you mentioned, it’s the case for most of us: Feeling like a failure because of some stupid binary standard (job, house, etc) that not everyone is meant to achieve at a certain time and what have you, learning warped views of actual reality because of what your parents thought, etc.

    I’ll be spending the last 1.5 years of my 30’s and probably my early 40’s getting off of all of this nonsense garbage. It’s not “treating” anything and has always wrecked havoc on my safety, wellness, health, quality of life, etc.

    ***Once again, I want to re-state the term “informed consent”.*** If a Walk-in Clinic doctor/Family Doctor/Psychiatrist even gave the slightest of damns, they would’ve informed us about side-effects, withdrawal/discontinuation “when our life was going better”, etc. There’s a reason they always start getting coy and change body language when you start talking about side-effects, iatrogenic injuries, withdrawal/discontinuation (both acute and protracted/long-term, etc). In any other industry besides Psychotropic Pharmaceuticals, it’d be a legitimate liability, malpractice, and quite-frankly lawsuit.

    If we had known that the Chemical Imbalance theory isn’t actually evidence-based, then we wouldn’t have started this “treatment”. If we had known that it’s not clear how these drugs work, how they know what to do, the protective blood-brain barrier, that these drugs are not compatible with evolution (hence the side-effects and withdrawal/discontinuation), we would’ve never gotten involved with this “treatment” either.

    The relentless and intense medical gas-lighting we experience about side-effects and both acute and protracted withdrawal/discontinuation is keeping the Counselling Industry alive as well. I believe you touched on this as well.

    We’re the ones losing money, jobs, housing, etc from these Pharmaceuticals while on them and in acute and protracted withdrawal/discontinuation. Not them. There are consequences/repercussions for us; not them.

    Thank you, once again. It’s incredibly important for people to REALLY give more thought to starting a non-evidence-based Pharmaceutical because of modern-day society stress/etc. It can decrease your quality of life and add even more stress, which is the complete opposite of its intention/purpose.

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  8. Thank you so much for this Hel, I’ve been sick to death of the fawned over elevation of “what happened to you?” as some Issac Newton moment, it never spoke to many of us. What matters to you opens up discussion without the inherent assumptions and loading of what happened to you.

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