Tag: mental health blogger

Posted in Advocacy, Mental Health, neurodiversity

Ideas On Mental Health Advocacy

Posted on by Millie :)

I get wrapped up in big ideas. And big ideas are important – the overall picture is important and helps us to understand the everyday and the connections between different issues and events. But I’m interested in the idea of how we can be effective in making change too. So I consider the question – does focusing too much on the big picture get in the way of making any change at all? How accessible is it to only talk about the big picture? Are the wider ideas helpful in getting people who aren’t already interested in mental health advocacy involved at first? Essentially – how can we actually start to make change and reach more people?

The small steps are important. So too is every single voice raised, however it may be. I am reasonably good at writing and giving talks/ workshops. I also love theatre and am passionate about the arts, something I hope to marry more with my advocacy going forwards. I am not particularly good in a protest situation. I can get very overstimulated. I’m not good at phone calls. I’m not good at prolonged in person social interactions. There are many things I’m not very good at, and though I can still lend my skills to different situations, it may not be at the frontline or in the way you might expect. My power lies in recognising that – and so does yours. You do not have to come up with an innovative idea or put your life on the line to make a difference in this world. If you can do that, wonderful! But never underestimate the unique skills and voice that you bring to the table. 

So back to the matter at hand – small actions. Very important to have the wider context. But small actions built up are what really make a difference, right? Maybe! Ok, so where do we start? Ah – well there’s a problem now, because I don’t know. No one knows. 

Is the long waiting lists the place to start? Or perhaps the funding? But then can you ever really fund a broken system? I would say no. No, we cannot just fund a broken system. But I’ve also been in rooms in CAHMS and the adult mental health service where it smells weird, the paint is peeling, and the lights don’t work. So maybe we do need to bring the basic infrastructure up to a reasonable level of functioning as is before we can start reforming and introducing new ideas/ scaling back ideas that aren’t working? 

I personally would love to see an end to the carceral, cruel way the system is. But I also know most people are unaware of the true nature of the issues with the system, unable to imagine a world without it, and that the world runs on profit. So I wonder if by focusing on the immediate abolition of the psychiatric complex this part of mental health advocacy shuts people out? I don’t know! I’m not saying that I know the answer, but I think it’s important to keep asking the questions. Maybe we need to see it in steps. Steps that may eventually lead to a very different system (or even the abolition of psychiatry), but that in the meantime are still seeing improvements. And I know that improvement isn’t enough, but it is something. It’s a step on the way to freedom. 

But then here we are again at the question of where to start. Mental health is interconnected with all other social issues. So we could even argue that the first step would be ignoring mental health altogether and solely focusing on, say, housing security. But can we really do that without including mental health provisions? Probably not. So we need all these different voices and people working together on different issues! Ok, so awareness is the first step? But awareness that doesn’t just perpetuate the same easy to swallow narrative of mental health; awareness that acknowledges the need for system change and societal change too. Although, even that awareness sounds complicated so we’re gonna have to start with easier awareness to get people on board, right?

Ok so, maybe awareness alongside something else. Fighting for funding? For changing the laws on sectioning? Both? Maybe… fighting to have a nationwide, government wide, deep conversation about what steps need to be taken. Fighting to be heard by the people with the direct power to start making those changes, so we can make a plan with them. Maybe? Or is that even too tall an order?

See, I prescribe to honest activism here at Our Happy Notes. I have chosen to share my journey with you in changemaking, and for me that means also sharing my thought processes about changemaking sometimes. This is something I am currently taking time to research, to read on, and to hear other people’s ideas on – to try and ascertain where actually might be a feasible starting place, and if that’s even a good idea. I’m not at a point in researching and discussing where I am able to come up with an idea that I can articulate and share or point people towards. But I wanted to share a bit of this process anyways, because I think at the moment I do believe all change starts with a simple conversation; connection. 

So what do you think? Do you think there is one specific demand or issue that needs to be in mental health advocacy to set the ball rolling? Do you have something in particular that you think needs to be looked at? Please let me know! 

And also… how can you use your voice? That’s a question for you to consider. It’s ok if the answer right now is that you can’t. 

Sending all my love and support to you all today xxxx

Posted in Managing Mental Health, Mental Health

Things I Wish Someone Had Told Me When I Realised I’m Bipolar

Posted on by Millie :)

When I started having greater mood swings and episodes than the other kids around me, I was about 12. At 15 I was diagnosed with cyclothymia, and at 18 this was changed to Bipolar 1. I use ‘realised’ instead of ‘diagnosed’ because I knew what was going on with me long before diagnosis, and I don’t think diagnosis is the be all and end all. I hold the label of bipolar very dear to me, but through my own definition for what it means in my life. Bipolar disorder is an awful thing, and many people die from it. But through necessity to survive, having bipolar disorder has forced me to expand my view of myself, the world, creativity and more. And for that I am very grateful. 

I was also grateful to realise I was bipolar, but I do know this is not the experience for many people. Regardless of whether you are happy or not, or expected the diagnosis/ realisation, discovering that you have bipolar is a big thing. So here are some things I wish someone had told me/ wish I’d known when I realised I was bipolar. Whether I would have listened to them is a different issue, and the journey to discover them is something I wouldn’t trade for the world. However if you have been recently diagnosed with bipolar I hope maybe this list will help you make sense of it all. Please take what resonates and leave what doesn’t:

  1. Understand that you are the same person as before your diagnosis and any bipolar diagnosis is not a death sentence, it is completely manageable.
  2. You get to define what bipolar means to you. It is your label to claim or not, your language to choose if you use or not.
  3. Connect and learn from others.

I’m not talking just medical doctors, I mean real people with real experience, whether that be through peer support groups (which exist), reading books and biographies, learning about different mental health practices, nature, social media etc.

  1. Define what healing means for you.

This is so important – no one gets to tell you what healing looks like. It may never be the idea of healing society gives (and probably should never be given how the human body actually works even for neurotypicals). Maybe it is creating a life where you have the space to be less productive, or maybe it’s not no depression but shorter depression etc etc. If you define your healing, you will be ok.

  1. For practical things you can start right away:
  • Track your moods (I use the app e-moods)
  • Limit alcohol and drugs 
  • Keep a journal (can help work out thoughts and keep track), or have another self reflective practice
  • Start a gratitude practice 
  • Create routines – sleep in particular is often a very important thing to have routine around for bipolar people, although I am notoriously bad at it 
  • Connect with your body. Exercise is very good, but I also mean on a deeper level of learning how to listen to your body, where tension and trauma is being held and how to release it etc
  1. Research any medications.

Medication is often touted at the main treatment for bipolar disorder and I am not saying that is isn’t life changing for many, because it is, but many of the drugs have different effects and side effects that you may not be fully aware of before starting them, so please take the time to research independently if you can.

And also – you do not have to take medication. If a bipolar person stops or chooses not to take medication they are often seen as very unwell, unrealistic etc. Some are forcibly medicated. I hope to see an end to all forced medication one day. It is not right for everyone and you should be able to make that choice. But obviously please give it serious thought – and never come off medication without consulting doctors first on how to do so because withdrawals can be really damaging. 

It’s not a lot, but it is a start. Take it one day at a time and healing is possible. You are not alone. If you have any other questions please let me know! Sending love and support to you all today xx

Posted in Advocacy, Mental Health

Mad Liberation: The Missing Piece of The Puzzle

Posted on by Millie :)

There are a lot of social movements now that are gaining awareness and support in new ways thanks to the global communication the internet has made possible. For example, feminism, Black Lives Matter, climate activism etc. And it’s very encouraging to see that more people are becoming aware of how these all link together too. There’s still a very very long way to go, that’s for sure, and in some ways the enormity can seem overwhelming. But there’s certainly movement happening in these movements, and a lot of passion. But what about mental health? 

When we think of the mental health movement we think of mental health awareness. And for the vast majority of people what they come in contact with under ‘mental health awareness’ is hotline numbers, slogans telling people to reach out, self care tips, and really very repetitive, surface level approaches. The general public does not seem to be aware of the deep issues and abuses in psychiatry, how we view mental health, and how it really impacts all of our lives. In all the fighting for a better future, mad liberation is overlooked, underestimated, misunderstood, or ignored. And that’s damaging for all of us. We cannot be fighting for racial justice, trans rights, and human rights without mad liberation. And yet so few people seem to be aware of it – in fact many people seem scared to approach the topic, which just shows how deeply the stigma and ignorance runs. Maybe, just maybe, mad liberation is the missing piece in the social justice fight. 

Take for example the language we use to describe other social movements – you are a climate activist, a civil rights activist, a human rights activist, but you are a mental health advocate. That’s not to say advocate is a bad word, it is absolutely not, and it’s a badge I’m proud to wear. But to call myself a mental health ‘activist’ sounds wrong. Why? Is it because advocacy feels more acceptable? Perhaps it connotes simply raising awareness within the status quo, continuing to adhere to systems already in place rather than radically opposing them and fighting for change. Maybe not, but I certainly think there’s something in the language.

 Furthermore, why is it always mental health advocate, and rarely mental illness advocate, or madness advocate? For me that sums up the major narrative surrounding the mental health movement, because it focuses on the palatable part that challenges less assumptions and less people, that appeals to everyone. Everyone has mental health, so everyone should care about mental health! Yeah – that’s not wrong. But a lot of people are deemed mentally ill. A lot of people deal with the consequences of madness in this society their entire lives. And the narrative focusing on the easily digestible, easily implemented parts of mental health awareness leaves them behind yet again. It silences and harms them. 

Psychiatry uses mental illness to uphold societal values. Always has. That’s why drapetomania was a proposed mental illness to explain why slaves wanted to escape slavery. That’s why being gay was classified as a mental illness until 1990, and being trans was classified a mental illness until 2019. And that is why one of the major diagnostic criteria for mental illness nowadays is disruption to a person’s ability to work – productivity and fitting into expectations of normality are societal values. 

But people are very rarely encouraged to consider this. They are encouraged to be aware of the signs of common mental illness in the context of deriving from the expectations placed upon us, and recovery in the context of making people be productive citizens again. The common mental health awareness narrative traps us. It does not allow us to redefine healing, to discover the socioeconomic factors in wellbeing, to find community, or to change the pace at which we live. It does not allow us to think about the deeper questions of why, and how can this really be better. 

But what would happen if we questioned? We would hear the voices of psychiatric survivors shouting about the abuse they have endured in the mental health system. We would discover how mental illness and criminalisation are deeply intertwined, and perhaps discover how to create true justice by supporting and liberating people in new ways. We would start to ask, what would happen if we didn’t sedate people into the same reality, but rather found ways to help people incorporate their own reality into their world? We would find new ways of sharing resources, kindness, connection, and changing the pace at which we live. We would find new language to define our human experience. We would free all of us to actually consider what happiness entails. Finally, we would find the link to all the other socioeconomic problems we are facing today, and in doing so find new solutions and progress towards all of them. 

We need to be kind and we need to be supportive, but we don’t need to be afraid to really ask questions about mental health, its presentation, and the treatment of madness as it is. Mental health activism is needed. Mad liberation is needed. But a deep held belief that mad people need protecting – or being protected from – has too often tried to stifle the missing piece in social justice movements. Mad people deserve to be heard, believed, and treated with respect and dignity in social action spaces just like anyone else. 

So I ask the question – is mad liberation the missing piece? 

Maybe. I don’t know for sure. But I think it might be. I certainly think solidarity between oppressed, hurting, and caring people is necessary for progress. We won’t fix everything; we will get things wrong. But as long as we keep questioning, and keep learning, we can make a difference. It’s worth a try at the very least.

Posted in Advocacy, Mental Health

Mental Health is Intersectional

Posted on by Millie :)

Today is a blog reminding everyone of a certain point I try to illuminate all the time through my advocacy: mental health is intersectional. What does this mean? It means mental health is not a stand alone issue; it is connected to all other social justice issues, and all other parts of our lives. Intersectionality is about where these issues cross over, and how they cross over, and how if someone falls in the intersection of more than one (for example are faced with racism and ableism) it can create more problems for them that may be overlooked, ignored, or misunderstood by even the most well intentioned people – myself included. But intersectionality for me also is not just about these disadvantages and discriminations – which are of course very real and very harmful and deserve to be seen. It is also about problem solving, and hope. 

The systemic issue of mental illness and its manifestation in individual people’s lives is not a stand alone issue. So it can be overwhelming to consider in a wider context because how the hell are we supposed to solve everything? I get it. It can be overwhelming, scary, and sometimes makes me want to just give up. But what if we chose to see intersectionality as empowering and a source of hope? Because it means we’re not just isolated as mental health advocates, or people who care about climate justice, or people who are trying to solve poverty. It means we are united as people who care. Understanding intersectionality, and continuing to be aware of how our understanding and circumstances may shift, allows us to be more creative in our solutions and more effective in our actions. 

If we start to realise mental health care also means community care then we are not left helplessly shouting into an abyss; perhaps instead we are empowered to create a community event, or connect with friends in a more intentional way. If we realise mental health care also means food security, then we are empowered to donate to our local food banks and come up with innovative ways to share with our community. If we realise mental health care means antiracism then we are empowered to learn and be intentional in sharing this learning with the next generation. When we realise mental health care is intersectional, we actually create stronger bonds, stronger supports, and stronger futures. 

We cannot shut our eyes to the world around us. But we might have a little bit of power over how we choose to view it. This country is becoming more and more authoritarian, and I don’t think it is an exaggeration to say it is sliding towards fascism in many ways. 

From the 3rd May more laws restricting and criminalising protest – including union action! – will come into effect. Over the weekend over 50 people were arrested for protesting peacefully during the coronation ‘celebrations’ – which cost millions while more people than ever are below the poverty line. A country without protest is not a democracy. A country where the gap between rich and poor continues to widen with government support is not looking after its citizens. We cannot ignore this and we cannot allow this, and we have to recognise how it relates to all our social justice issues. How can we ever hope to see a country with good mental health if people do not have free speech and cannot afford to eat? 

The good news is, resistance isn’t one size fits all. And understanding intersectionality can allow us to fight back in an effective, loving way. If everyone who can supports their food bank and creates community driven initiatives to eradicate food insecurity, the government can’t ignore it. If the artists create art, and the people who can protest go to protests, and the workers all strike, then it sends a message loud and clear that they can try all they want, but we aren’t having it. We care about each other and we want to see a brighter future. And that big message starts with small actions. It starts with having a conversation, donating a can of beans, drawing a picture, and offering to help out a neighbour. Even if you’re only making a difference to one person, and even if that person is you, you are still making a difference. Never think you cannot make a difference; it’s at least worth a try. However that looks for you, even if it looks like rest right now. You matter. And it all intersects. 

Sending so much love and support to you all today xxx

Posted in Mental Health, Personal Growth

Fear of Going Crazy

Posted on by Millie :)

Two years ago a group of young changemakers, including myself, came together for a discussion. We decided that we would all come dressed as our worst fears. There was one person dressed as a bat, another as a spider; one came as the idea of losing love. I came dressed as the fear of losing my mind. As someone with chronic mental illness, it’s not a fear that feels far away – it’s not a distant possibility that one day I’ll get dementia. It feels very real, very possible, and very close. And I wanted to talk about that here today, because it’s a part of my mental health experience that I haven’t seen reflected in many places.

Me dressed as the fear of losing my mind

I think many people with experience of mental health issues, or big emotions, can relate to the feeling that it’s never going to get better. In times of depression, grief, and heartache our ability to truly envision a future and see the fullness of life becomes warped. It’s a terrible phenomenon that unfortunately has taken many lives. I’ve experienced it myself many times and it is terrifying. But the feeling of going crazy, the fear of it, is something different for me. In intense moments it takes the same inability to see things getting changing and redirects them towards a feeling of a loss of self and loss of reality.

As a mentally ill person, despite owning the idea of being ‘mad’ with great pride, I feel I am constantly running from the idea of being seen as crazy. Which is almost certainly related to the stigma around certain symptoms – namely the less pretty ones, mania, psychosis, irritability, flight of ideas etc; the stigma around the idea of being ‘crazy’. My mental health difficulties are a huge part of my identity – by my own choosing – and yet I still feel a need to mask how they really are lest I lose control over the narrative of my own mental illness. So that’s a part of this fear, it’s not really a fear of losing my mind, but a fear of being seen as crazy and losing autonomy and connection because of it. A deep fear of being misunderstood and unseen.

Yet the real, gnawing fear for me is internal. It is a fear that one day I will become irreversibly changed; I will lose all knowledge of our shared reality and slip entirely into a different one; I will enter an episode and never come out; I will lose myself. It’s ridiculous really, because we are constantly irreversibly changed, and our idea of self is constantly changing. Most likely the fear is rooted in internalised ableism compounded by my experiences of madness.

As Carrie Fisher once said ‘once you’ve lost your mind you don’t know it’s missing’ (that wording may not be right, but that’s the gist). So really the end result that I’m so scared of would actually just be a different way of being. Nothing inherently better or worse about it for me. So what am I really afraid of? Other people’s judgments. A lack of autonomy and care. And perhaps ‘going crazy’ and then reemerging, as would most likely happen in all the scenarios I imagine. Because I have actually lost myself before – when I was drinking I lost sight of who I was. That process of reemerging is deeply, deeply painful so maybe that’s what I’m afraid of. And finally, when I am not in the intense whirlwind of feeling like I’m going crazy, I think what I fear the most is being in that whirlwind again.

Let me attempt to illustrate why the whirlwind is so terrifying. You see, in that place I am two versions of myself at the same time – trapped in a paradox being ripped apart with searing force. One version of myself is the whirlwind. It is the tornado, screaming and tearing through life. The other version of myself stands in the eye of the storm, trying to avoid its path, screaming pointlessly into the spiral to remember who we really are while losing touch with who I am at the same time. Mostly all I can hear is the version that becomes the tornado, but there comes these background thoughts, senses and moments where the version of myself that sees life more clearly breaks through. 

And really it is the background knowledge that something is not right, that there will be consequences, that I am hurting – it is that reminder of who I am that makes me so afraid and so hurt. I know somehow that something is wrong, but I can’t stop it. This paradox creates the fear of going crazy, because I’m trying to figure out what’s real, trying to be less angry, trying to do the right thing and still getting it wrong. The moments when the whirlwind drowns out all sense of self are actually more peaceful, in a strange way.

It’s really a pointless fear. I can do all I can to protect myself and those around me and nothing more. The idea of being judged is useless to me; the internal ableism is something for me to face. But still this fear raises its head every now and then. This year at drama school I became convinced I was ‘disappeared’ – not that I had disappeared, that I was disappeared. I was so far away from myself and yet able to drift through my life and I feared that it would be that way forever. It wasn’t. Most things don’t last forever and that is wonderful. Essentially, if you’re a mentally ill person who shares this fear – hi, you’re not alone! And if you’re not and this sounds to you like I’ve already gone crazy, who knows – our realities are only relative anyway. I choose to set free this fear today and face my future with love and action instead. Sending love and support to you all today xxx

Posted in Advocacy, Mental Health

Why Do We Pathologize Pain?

Posted on by Millie :)

We’ve come to pathologize emotional pain and human distress. That’s to say, we’ve come to medicalise it – give it labels that make it into a medical problem. And of course this serves a purpose in our society and our systems; I personally am hugely grateful for my mental health diagnoses because they help me understand myself and how I view the world. But the term ‘pathologizing’ goes beyond just medicalising emotions. It defines the problem that ensues from medicalising our emotions. 

According to the Cambridge dictionary, pathologizing means: ‘the act of unfairly or wrongly considering something or someone as the problem, especially a medical problem’. This is something we see in mental health spaces all the time, with very little awareness of it. The way we discuss mental illness is so often through an individual lens. We ignore how the modern world’s expectations affect what we see as disordered – for example a huge criteria for mental illness diagnosis is a lack of productivity. But productivity is defined by societal norms and expectations. We label someone as depressed, saying they have a chemical imbalance while ignoring the fact that they are living in poverty and perhaps if they weren’t their mental health would look very different. At best we say that these external factors are simply contributors and not an essential part of our human experience; we ignore how we define was is disordered or not entirely. 

There’s a million problems with this. It prevents us from trying to build a better world in a more informed way. It isolates sufferers and prevents them from getting the kind of care – like housing, community, less workload – that they actually need. I could go on and on about this (and I do quite often!) but today I want to answer the question – why do we do this?

Well pathologization stems in many ways from medicalisation. I think there’s benefits and issues within this itself, but it’s understandable why we do this. By giving clear criteria for diagnosis in a medical format it would seem we can more easily start a larger number of people getting treatment. Unfortunately this isn’t the case, but in theory this would seem to make that easier. It also allows us to have some kind of framework to understand ourselves and more easily find others who may have a similar experience – it has certainly helped me with this! And in theory it would help others have a doorway to understanding people with a mental illness by looking at it through a medical lens, so they would know how to start approaching the problem. Furthermore it also gives a structure for how we can syphon off funding for mental health care by making it a wholly medical service. All logical and on the surface optimistic reasons to medicalise emotional pain. 

But soon we see the problems come in such as trying to ‘fix’ people to medical standards too rather than to their own standards. We start seeing people as the medical problems rather than as people with diverse experiences. We try to fit people into one route for fixing the issue because that’s easier. Medical problems need medical solutions right? Medication and hospitalisation rather than community and economic support. We see them as scores and issues. And soon we are pathologizing them. The individuals become the problem they present with, and when the one-size-fits-all treatment doesn’t work, we assume it must be the individual’s fault. 

Maybe it’s just a natural progression from medicalisation then? But maybe it’s also a symptom of the way our western society functions as a whole. We are not exactly encouraged to see ourselves in the context of the world around us. We’re told we are individuals and isolated in many ways – so it would make sense that we see our problems as individual problems that need isolated solutions. So simply because of the way we have learned to exist in the world we don’t think to see our emotional distress as interconnected. 

Then of course, as already mentioned, we live in a society driven by productivity at ever increasing speeds. We have an intolerance for difference, for people who need different support or cannot fit themselves into the world’s expectations of them. So we need to label them as disordered rather than face the idea that the way the systems are running isn’t working. It negates society’s responsibility to change and accommodate. But the thing is as the world gets faster, the economy gets worse, pressures get bigger, more and more people are finding themselves with mental health issues. Do you really think this is a coincidence? The world is becoming more and more incompatible with human rhythms of nature, so more people are finding themselves in distress. But also if the expectations shift to demand more of us or different things from us, then whatever behaviour doesn’t fit those expectations ends up being labelled as disordered. 

And maybe it’s fear – we don’t want to face that we share emotions with someone with schizophrenia or bipolar. We don’t want to admit we relate to an autistic person, or can kind of see the sense in what that psychotic person is saying. We are scared that the difference lives in us too, maybe? And again – we have not learnt the skills to be able to conceptualise how others may live differently to us through their perceptions of the world. We have not learnt tolerance, nor we have not learnt to question the status quo – because it would threaten the status quo. 

I think we pathologize pain because it’s the easiest thing to do when everything else seems so overwhelming. But we can begin to change this simply by opening ourselves to compassion; opening ourselves to a different narrative. We are all human and we are allowed to have deeply painful, wonderful, beautiful human experiences. That means sobbing our eyes out or seeing shadows no one else can. Feeling does not make us the problem. 

Hopefully that made some kind of sense, my little brain ramblings on the internet. Sending so much love and support xxx

Posted in Advocacy, autism, Mental Health, neurodiversity, Personal Growth, sobriety, therapy

Hurt by Psychiatry

Posted on by Millie :)

Content warning: ED, psychiatric abuse, suicidal ideation, any mental health topic really

I want to write a really strong and defiant letter. I want to write some crazy, proud, creative theatre piece. I want to write something truly hopeful. And while I do have hope, and I do have gratitude – because it is essential to my survival – I also have a lot of pain. And anger. I can talk openly about so many traumas and just general shitty things that have happened in my life. But the one I’ve never been able to write about, never even been able to get through a conversation about without screaming and crying, is the pain endured under the psychiatric complex. Because they were meant to help me. Time and time and time again I have gone looking for help and time and time and time again I have been turned away with only more hurt. I know help is a brave word. I’m not afraid to say it. But I am afraid that when I say it no one will listen. This is my story of a journey through the mental health system. 

Just a disclaimer, because as a writer on mental health I feel it is my responsibility – if you are in a bad place and looking for professional help, please do not use this as your excuse not to. I do know some people have been greatly helped by the mental health system, and you could be too. This is not intended to invalidate anyone’s good experiences, but rather to say that all of us deserve to have those good experiences. This is simply my story as someone who feels they have slipped through the cracks. If you feel this may affect you negatively I implore you to take the decision not to read any further. 

I first asked for help from the mental health system when I was 12 years old. I was experiencing mood swings and distress that were really bothering me – maybe just normal teenage things, maybe not, but the point is it doesn’t matter. They were bothering me. Anyone who wants help, even just to navigate daily life, should be given it. I was assigned a counsellor from the early intervention team. I didn’t like them, so I asked to change. I was discharged from the service – I took that as a message that if I had an opinion on my care, my care would be withdrawn from me. 

My first contact with CAHMS (child and adolescent mental health services) was due to an eating disorder at 14. My life was being ruled by it – I had complete meltdowns when I couldn’t exercise, was hyper fixated on food all the time, was weak and angry and alone; I was really hurting. They weighed me. They told me I wasn’t a low enough weight. I took that to mean I wasn’t sick enough. Without any regard for how I felt, or how food was ruling my life; without anyone trying to find out anything about my experience they denied me the help I so desperately needed. Suggested possibly a meal plan – with no support to implement it or formulate it. If a teacher hadn’t sat with me at lunch every single day for a year and coached me through it because she’d been there too, I don’t know how I would’ve gotten through it. 

I severely relapsed with my eating behaviours twice more, and I still struggle with some thought patterns and triggers to this day (though I am in a much better place, largely due to recovery in other areas giving me the tools to transfer). But I never felt like I really recovered from it, or had the support I needed. Even 9 months ago that teacher would still notice when my old behaviours around food crept in – even before I did – and help me to recognise and head them off. I am immensely grateful for that… but it wasn’t her job. It was never her job to be the main guidance and support in eating disorder recovery. 

CAHMS did offer me six sessions of group therapy. This was to deal with my overwhelming anxiety – much of it around socialising – and deep depression. They didn’t see it as deep depression. It was. It was really, really dark. I stopped going to any lessons and lost all sense of self and hope. But yeah, six sessions would be enough apparently (obviously not). I freaked out at the thought of group therapy, it was entirely unsuitable for me. Once again I received the message in response that if I had an opinion on my care, I wouldn’t get any care. They wanted to discharge me right then, but my wonderful mum stuck up for me so they offered me three – I repeat THREE – CBT sessions. They were not useful. I was put on a years long waiting list for an autism assessment. I was offered no more support. I continued to struggle. 

My mum’s determination to get me the help I deserved was incredible, and probably the only reason I got any support at all. (My mum is probably reading this, so thanks mum). She found a charity that was amazing in supporting us through my teen years, and funded me to see a private psychiatrist – this would not have been possible without them. However I wouldn’t say that was particularly helpful either. That psychiatrist did diagnose me with autism (side note – the assessment for autism really needs to be changed), anxiety and depression. I am eternally grateful for my autism diagnosis – it truly did change my life knowing I was autistic. But it changed my life because I went away and learnt about it, as did my family. The psychiatrist did not formulate a treatment plan for any of this, or provide any further support. Some medication that didn’t work was all she offered. 

In this time I also saw a few therapists – I didn’t like them, one of them didn’t like me and kinda dumped me. All of them were privately paid for. The subpar care I received was paid for privately – can you imagine how much worse it would have been if we hadn’t been able to afford it?

I know this is all a lot of information, but stick with me here. This journey is important to understand because it is something so so many people face. I slipped through the cracks of this system – even with the privilege of being a white, cisgendered woman. I had it reasonably easy. 

In February 2020 I had what I now recognise to be my first (and most intense) mixed episode. I cannot even put this experience into words but essentially it was all the darkness of depression with all the heightened energy and irritability of mania at the same time. I felt reality slipping away from me and I have never been in such intense distress. Two teachers stayed with me at school hours after school ended to try and keep me safe. They eventually helped me calm down, but I later found out they were so concerned they were about to call an ambulance or the police, as the crisis line wasn’t helping. I went to the GP during this episode begging for help. She prescribed me valium to calm me down, but when I begged her for more support I remember her chastising me for being so emotional because she had other patients waiting. I took that as a message that I still wasn’t sick enough; still wasn’t important enough. 

In March 2020 the private psychiatrist diagnosed me with cyclothymia. We had to pay extra for an emergency appointment. She decided I was now too complicated to be under her care and needed more support so referred me back into the NHS. They did not follow up on her recommendation for more support. By the time they saw me I was a bit calmer so apparently that meant I didn’t need help. In her eyes I was too bad, in their eyes I wasn’t bad enough. So I was left with nothing. This was the trend that would continue for the next three years. 

In September 2020 I wound up in A&E. I was broken and desperate. When the CAHMS crisis person finally arrived she acted annoyed about me being there, annoyed she had to be there, uncaring. She essentially asked ‘if things are so bad then why haven’t you killed yourself yet?’ and sent me home with no support. They didn’t follow up on any support because I calmed down a bit after, so I was no longer considered in crisis when they finally did get in contact (even though they hadn’t helped me when I was in crisis) and because I was drinking at the time. Just so we are all clear – if a young person is drinking as heavily as I was, that is exactly the time they need support. I went to my first AA meeting after I left the hospital that day. And excuse my french but thank fuck I did. I have no idea if I would still be alive otherwise. And having connected with others who have been subjected to inpatient treatment, I am incredibly grateful I did not have to bear that extra trauma. This is how bad the surface level service is – it’s even worse inside. 

After I got sober in July 2021 I was still struggling. I finally got to see a psychiatrist on the NHS in October 2021 because of my mum’s insistent fighting for me. When he asked me what I wanted from the meeting, he chastised my response. He was unclear. He shouted at me, and revoked what I thought I had been diagnosed with in a letter. I was meant to see him again in 10 weeks and he cancelled. I got discharged from CAHMS without them ever asking to talk with me about how I was doing. 

The one professional who has been a saving grace is my therapist. She is autistic herself and very flexible. But again – if I wasn’t able to fund that privately I don’t know where I would be. After my charity funding stopped when I turned 18 I had to take the sessions down to every 2 weeks, even with her sliding scale, which is significantly less helpful. Luckily I’ve also found amazing peer support, especially through AA, and spent a lot of time reflecting and doing my own work, so I’ve managed to build myself a much brighter life. But it’s been hard. And sometimes I really do need some more help – no one should have to do this alone.

I Went back to the NHS this October and had my first ever good meeting with anyone, just someone in my GP clinic. Why? He was honest. He genuinely seemed to care, but there was nothing they could offer me. He explained that as far as the system saw it, I had already been helped.

In late 2022 my mental health really started to decline again. I went back to the NHS this October and had my first ever good meeting with anyone, just someone in my GP clinic. Why? He was honest. He genuinely seemed to care, but there was nothing they could offer me. He explained that as far as the system saw it, I had already been helped. So from October I was searching for a psychiatrist who would see me. 

I was turned down by over 10 private psychiatrists for being too complex, having comorbidities, or my favourite way of putting it: ‘them not being able to offer the support I need at that time’. So I was again too bad for private and not bad enough for the NHS. One of the only people who would see me charged just under £1000 a session. Others said they would consider seeing me, but were booked up until 2024.

Finally in March 2023 – 5 months later – I got to meet with a private psychiatrist. And wow, he was amazing. We had three meetings so we could cover everything. He was kind, listened to me – really listened – and didn’t patronise. He treated me like an adult, and made it clear I would have a say in my care plan and the final report that would be sent to my doctor. I would have a say? I almost thought that wasn’t allowed. I’m still sceptical, it still doesn’t feel real. 

He diagnosed me with Bipolar type 1. Just think about that for a minute – an 18 year old has been dealing with undiagnosed bipolar 1, unsupported, emerging from 12 years old. I have no idea where I would be without the angels placed in my life along the way; without the undying support of my family and friends; without the flexibility of my school. I knew something more was going on, I knew how much pain I was in, and no one in the mental health industry was listening. I was screaming into a void and not even hearing the echoes of my own screams. (A separate issue is that we shouldn’t need labels to validate that level of human distress, which is what it is at its core, but diagnosis can be so validating. Read more about that here). 

I am not in any way saying this one experience erases all the rest. It does not. It absolutely does not. And it doesn’t not mean that psychiatry isn’t built on an oppressive, harmful foundation whose history has been hidden. It is. But it was a little hope given back to me. A relief at the very least. Before I went into that meeting I said ‘I’ll take them just not being actively mean to me’. How sad is that? What a desperately low bar. 

I’m still scared. He has instructed my GP to refer me back to secondary care teams in the NHS, which I still – like always – hope might offer some help. But the main thing offered seems to be medication, which I have some serious and valid concerns about. But I am terrified of raising these concerns or asking about alternatives for fear that a) I will be labelled as disordered and my new diagnosis weaponised against me or b) I will be labelled as non-compliant/ not wanting help enough, and sent away again. I wish I didn’t want help from them, and maybe one day I’ll be able to find a path that avoids dealing with the mental health system altogether. But I’m not there yet. Nor should I have to avoid it. It should be an inclusive, varied, accessible service. It should have community and individualised care. It should have alternative treatments and input from patients. It should see the human condition as a spectrum. But it doesn’t. And being mentally ill makes me scared that if I voice any of this, I will not be taken seriously. How can anyone ever prove that they are sane?

I deserve better. Everyone deserves better; we deserve to know that no matter what we’re going through there will be appropriate support for us. But it’s not there. And this broken system is quite literally killing people. We can’t just say fund the system either, the system needs to change. I need it to change, we all need it to change. 

I think I’m sharing this because the younger version of me wanted desperately to read it from someone else. So the core message is that you are not alone. You are not alone in the hurt psychiatry has caused you. You are allowed to be angry about it, and distrusting of it. You are allowed to choose your own care and your own path – even if others don’t understand it! (And that applies to all paths – mental illness should not be policed). Your pain is valid, completely valid, and I see you. I see you.

Sending love and support to you all today xx

Glowing fluorescent blue triangles in a pattern
Posted in Advocacy, Mental Health, therapy

Issues with IAPT

Posted on by Millie :)

Disclaimer: Before I dive into the issues with IAPT I just want to clarify that this blog is in no way intended to discredit anyone’s positive experience with IAPT or discourage anyone from using the service. IAPT could still be a piece in the puzzle of helping you find the right support. I am purely highlighting issues that some people face because everyone deserves to have a positive experience of mental health care – if the mental health system can’t adapt to different needs, then it needs to change. This post is about raising awareness of the gaps within that system, and the plaster solution that IAPT has become. Because we all deserve better – it could be you or any of your loved ones needing a more comprehensive, long term and personal care plan. And I would hope that the door was always wide open for you to receive the support you need.

With that said, let me give you an introduction to what IAPT is. IAPT stands for Improving Access to Psychological Therapies. If you are an adult and go to the doctor with a mental health concern, you are likely to be referred to this service as one of the first ports of call. It was rolled out in 2006 and there are now around 220 IAPT services in the UK. It offers patients a limited number (usually 6, up to 12) of sessions with a counsellor using CBT – Cognitive Behaviour Therapy. And it’s true that rolling out this service greatly reduced the 8-12 month waiting time for psychological therapy in 2005, which is great, but that doesn’t mean it provides a greater level of care. 

So let’s look at the information I’ve just noted. CBT focuses on changing thought patterns and behaviours of individuals – which by definition is not suitable for anyone who’s mental health is being impacted by the situation they are in. It’s true that CBT skills can be incredibly useful in helping us cope with day to day life, giving us the tools to reframe our experience so it becomes bearable and our thoughts less consuming. But that doesn’t mean it’s perfect by any means, nor suitable for everyone. For example many autistic people have likened the approach of CBT to gaslighting; it just isn’t suitable for application with neurodiverse thought patterns in many. For many others too it simply doesn’t provide the all round support they need – the therapy sessions are not designed to hold space for the person, explore route causes that will continue to be present, or brainstorm ways to change the situation they are in. It can provide people with a quick fix to a singular problem, but lacks a long term approach. 

However, it’s the only framework offered with IAPT, already excluding many from the help they need. Especially because if someone goes through with IAPT treatment they may be seen as already having support and having to face longer waiting times; likewise if they refuse to continue this raises the issue of non-compliance. Non-compliance is a complicated label used in the mental health system sometimes that essentially labels patients as unwilling to try and help themselves and makes it harder for them to access support, simply because the support they refused was not suitable or accessible to them. This is a systematic issue of not providing individualised care, but instead it is labelled as a personal fault and the burden is borne by the individual. 

Even for the people CBT framework does suit, the IAPT programme offers such limited sessions that it’s arguable how much long term support and healing they actually offer. 6 sessions is simply not enough in my eyes. What about the people with more complex issues? The people that learn slower? The people that need time to build a secure relationship with a therapist before they feel confident to start working with them? They are all being left behind by the existing IAPT service. 

None of this is surprising when we look at the roots of how the IAPT service came to be. In 2005 Lord Layard – an economist by trade addressing the economic costs incurred due to mental health crisis – and David Clark – a professor of psychology championing CBT – pitched their idea for IAPT to a board room full of government officials. They pitched it through the economic benefits that providing a cheap service that got people back to work could reap, easing the £12 billion cost of depression each year. Though I understand why so often proposals have to be pitched through an economic lens rather than a moral or social one, I do think it’s very sad. And I think in many ways shows why this system isn’t working. We’re approaching the issue of the mental health crisis wrong if we’re approaching it from a perspective of getting people back to work. Mental health doesn’t exist in a vacuum and is deeply intertwined with all aspects of society which we cannot simply ignore addressing when looking to help mental health. Furthermore, healing is not actually about productivity – this is considering healing through the eyes of someone else looking in on a life trying to define quantifiable proof of them getting better in a way that is palatable to society. Healing is internal and personal; our current mental health system does not recognise or allow space for this in our society. 

Nonetheless IAPT was heralded as an astounding success in the mental health sector worldwide for its quick rollout and wide reach. But in 2010 Dr Micheal Scott – a clinical psychologist at the University of Manchester – began to question the success of IAPT when assessing its patients. He was hearing many stories of patients with bad experiences of the programme who found it useless, dropped out, or pretended to be better to make it end quicker. He decided he needed to look further at how the effectiveness of IAPT therapy was being assessed in order to discover if it was really as great as it was claimed to be. 

The first thing of interest he discovered was that IAPT was responsible for collecting all the data on its own performance – there were no external reviews or assessments taking place. I think many of us will know that this is a bad scientific practice for collecting and understanding data – there should always be peer reviews. So he conducted an assessment to discover the true recovery rates. 

He began by reviewing the cases of 65 people. I’ll admit that’s not a lot, but stick with me here. Scott used various procedures for a robust review including in-depth interviews, diagnostic assessments, and evaluating medical records. His results showed that no matter the condition, only 16% could be considered as recovering. This is woefully below the 46% reported by IAPT themselves – and with good reason. IAPT’s method of assessing recovery rates only included those that completed treatment with them and neglected to count the half of patients who dropped out of treatment. The fact that half of patients drop out of treatment at all is a huge indicator that the programme is failing anyway, but the correct way to conduct research would be to include them in the data. By omitting them IAPT are artificially increasing their recovery rate. I would also add here that even their self-proclaimed 46% could be much higher with proper individualised, socio-culturally aware treatment plans. 

Scott’s admittedly small study isn’t the only one either. The University of Chester’s larger study found a 23% recovery rate, still much lower than IAPT’s claim. And that’s before even considering what IAPT deems recovery to mean. I’ve already explained that IAPT was built around the idea of getting people back to work, and so it’s unsurprising that the programme focuses on getting people back to what are viewed as functioning members of society rather than personally happy with their healing journey. 

This is seen reflected in how IAPT reviews patients progress. At the start of the therapy questionnaires are conducted that rate how depressed or anxious you are, and then again at the end of the therapy. If at the end of the therapy you score lower you are considered to have improved. If you scored just above the clinical threshold for depression at the start of the therapy (let’s say the threshold is 10 and you scored 11) and by the end of the therapy you score just below (let’s say 9) then you are considered recovered by IAPT. But in reality you’ve only dropped 2 points and are likely still experiencing emotional complications in your life! They’re now just not considered inconvenient enough to others to be clinically notable, but that doesn’t mean they aren’t hugely significant to you. You might not feel ‘recovered’ at all. And the scale is really sensitive anyway – you can move around 5-7 points simply by sleeping and concentrating a little better. 

Furthermore , IAPT doesn’t even conduct a control group meaning there’s no way to know if the 23% ‘recovering’ would have improved slightly without IAPT at all. In fact a recent meta-analysis (meaning examination of lots of data from different individual studies) showed that a total 23% of people suffering with depression spontaneously overcame their symptoms within three months without receiving any treatment. Which aligns with the 23% recovering from IAPT exactly, suggesting that the service is totally irrelevant. Yet it is often the only service offered to those struggling, many of whom will continue to struggle unsupported. Real lives are in the balance, and the system is trying to stick a plaster over the issue that doesn’t even work. 

This doesn’t even begin to touch on the deep issues for workers within the IAPT services, who are struggling hugely themselves and being crushed under a culture of form filling and goal hitting heralded above actually providing support. An ex-IAPT lead said, in an interview with James Davies: “To hit the waiting list targets we’d offer people some minor intervention but it was not what they really needed – it was what we could offer to get higher results”. And there lies the problem in a nutshell – people are not being offered the help they so desperately need. And how could they in a system that values goals, productivity and economy above people’s lives? How could they in a system that is built on societal expectations, harm, and conformity? How could they in a system that isn’t working to face the deep intersectional issues of the day? How could they in a system that is underfunded and in desperate need of reform? 

I recognise that criticising the mental health system is a complicated thing to do, because it’s where we hope to find help. But the reality is that it falls short. I do have hope it can improve; I have hope in our communities and our efforts to see better care. And I do know that despite a failing system people can recover – by their own standards – and live bright lives. But I know too it shouldn’t be so hard to get support, for anyone. 

So here are some calls to action! What you can do to help: 

  1. Most of the information in this post comes from James Davies’ book ‘Sedated: How Modern Capitalism Created Our Mental Health Crisis’. I would recommend that everyone read this book to educate themselves further 
  2. Sign up to Mind’s newsletter to find out about their campaigns for better mental health care 
  3. Write to your MP about the failing mental health system and demand care that is individually tailored, socio-culturally aware, and focuses on personal healing not productivity 
  4. Share this post and have conversations with people in your life about the mental health system – all change starts with a conversation 

Thank you so much for reading! Please let me know any thoughts or questions you have in the comments below. Sending so much love and support to you all today 🙂 

Sources:

https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt#:~:text=What%20is%20IAPT%3F,with%20anxiety%20disorders%20and%20depression.

‘Sedated: How Modern Capitalism Created Our Mental Health Crisis’ by James Davies 

https://www.madinamerica.com/2022/06/uk-iapt-abject-failure/#:~:text=We%20identified%20a%20series%20of,of%20misdiagnosis%20and%20inappropriate%20treatment.

Layard, Richard (2005), ‘Mental Health: britain’s biggest social problem?’, paper presented at No. 10 strategy unit seminar on mental health, 20 January 2005 

https://www.mind.org.uk/information-support/drugs-and-treatments/talking-therapy-and-counselling/cognitive-behavioural-therapy-cbt/

Griffith, Steve, Steen and Scott (2013), ‘Improving access to psychological therapies (IAPT) programme: setting key performance indicators in a more robust context: A new perspective’ 

Whitford, H et al, (2012), ‘Estimating remission from untreated major depression: a systematic review and meta-analysis’

Posted in Advocacy, Managing Mental Health, Mental Health, Personal Growth

Journey Through Panic Attacks

Posted on by Millie :)

The first time I experienced a panic attack I was 11 years old. I had come home early from school that day with a headache and some other physical symptoms I now know were anxiety, and I had gone upstairs to have a nap before dinner. My mum came to wake me up when it was time to eat, but I must have been in the wrong phase of my sleep cycle because I awoke disoriented, thinking it was the morning. We’ve all been there when we wake up not quite sure what’s going on. So I thought it was the morning, and when my mum told me it was time to eat I responded asking about breakfast. There was some confused back and forth with my mum trying to convince me it was in fact dinner time, and still the day before, and I suddenly spiralled into my first panic attack. I don’t remember a whole lot of the details while it was happening, but I do remember how terrifying it was. I remember feeling like I couldn’t breathe; I simply could not get the air into my lungs. I felt faint, and sick, I thought my legs couldn’t hold me up. I don’t know if I had the thought that can come alongside panic attacks where you think you’re going to die, but I knew something was very, very wrong; I definitely thought I was going to faint. Somehow I ended up at the bottom of the stairs, gasping for air and sipping water out of a bottle cap (I think that was the only way I could manage to do it?) as it subsided, and I can still recall the exhaustion after that first one and how foreign it felt. My mum suggested it had been a panic attack, and at that point I didn’t know what that meant. I had no idea they would become such a huge part of my life. 

I have had many panic attacks since this day. I’ve also had some anxiety attacks, which are more prolonged and less intense, and I experience sensory overload too as an autistic young person. Sometimes sensory overload meltdowns and panic attacks can be hard for me to distinguish, and sometimes they overlap or morph into the other, but it’s helpful sometimes to figure out which is which as it can aid in the recovery process both long and short term – for example in a panic attack changing my jumper probably isn’t going to help and may not even be a possibility, but with sensory overload changing the material of my clothing or my environment may help it to subside or avoid it altogether when I feel it building. This year I have felt the strongest mentally overall that I have in a very long time, but I still have panic attacks. Some months I have none; others I have many. For example in May I had seven.

 It’s important to note that while I find the label panic attacks useful, it is a pathologised word. That means there is a certain medical connotation attached to it. However panic attacks are a total overload of our nervous systems; an explosion of tension and anxiety. We cannot talk about expressions of mental distress without recognising that they are often responses to a traumatic and stressful world, whether immediate results of a specific trigger or a build up over time. For example in May I was dealing with exam stress, difficult atmospheres at home, grief for my safe place, and more time on my hands. These all contributed to my spike in panic attacks I have no doubt. Other times I may make it to the other side of a stressful event and then experience panic attacks, almost like a hangover of emotions. It’s not an individual failure, but an understandable reaction to a difficult world. You are not broken for experiencing anxiety. You are not shameful for having panic attacks. 

I am a firm believer that to appreciate life fully we need to be able to laugh, even at the bad stuff. There are certain events surrounding some of my panic attacks that I find kind of hilarious looking back on and that helps me to deal with any embarrassment or regret surrounding them I may have. For example, I have terrible stage fright (despite being an actress, ironic I know). Before the final dress rehearsal for Bugsy Malone – my first show in a proper theatre – I had a panic attack in the wings. I was crouched behind a prop box in heels I could barely walk in and my tailored sparkly dress writhing my legs in pain and sobbing without air. It was a pretty desperate moment, though the juxtaposition itself is amusing looking back. The next thing I remember is a stagehand saying into their walkie talkie ‘can someone please come and remove the fire hazard from the wings?’. I was the fire hazard because I couldn’t move myself out of the way, and I was carried back to my dressing room by my director. Talk about a diva moment. Looking back I cannot help but laugh at the absurdity of the experience. 

That particular panic attack also showed me how loving people can be. I hope that someday everyone experiencing mental health issues gets to experience the pure love and support that I did that day. I had to go on stage just after recovering to do a mic check. I was so exhausted – my bones were heavy; the exhaustion of a panic attack travels to your core and can make you feel like your body isn’t your own – so all I could do was stand centre stage. The rest of the cast sat in the audience as I weakly sang ‘My Name is Tallulah’. Half way through the song I raised my eyes and saw that they were all swaying along, waving their hands in the air; at the end of the song they stood up and cheered and called out encouragement. It was beautiful. No one judged, no one whispered or pointed. They rallied and supported me. That’s what we all deserve. 

Another amusing panic memory was when I fell on my face in the mud on a rainy day trying to escape prying eyes and instead drawing them all to me; again, it wasn’t as embarrassing or well remembered as I feared it would be. Or when my teacher gave me their scarf to wrap around me and help me feel safer and I immediately snotted into it – I got to keep that for a while rather than immediately returning it. Or the time I went to get help while having a panic attack but there was already a girl in the office having a panic attack and it became like a queue for a very strange and unwanted product.

 I’ve been alone on bathroom floors, writhed my legs, hit my chest, backed myself into literal corners to try and feel a bit safer, thought I was going to die, taken off most of my clothes because I thought my skin was going to burn, and just general cried and made weird sounds while trying to breathe. Point of all of this is – I survived. And each one has become a little easier to recover from. The worst a panic attack will do is make you pass out; it cannot kill you. Remember that – it cannot kill you. If you are having one, it is horrible and tiring and painful, but you are safe. And if you are with someone experiencing one it’s ok to remind them of that; if you can recognise what it is and call it what it is. Tell them it’s a panic attack and that they are safe. Often it helps not to try and suppress it either but rather to ride it out, let it be. Because they are not the end of the world, but they are super scary and it’s ok to recognise that too. 

I hope that maybe reading this has helped someone feel a little less alone in their experience. If you’d like a more in depth guide on how I deal with my panic attacks let me know in the comments below! Sending love and support to you all today! Xx