mental illness advocate – Our Happy Notes

Ideas On Mental Health Advocacy

Posted on June 2, 2023May 27, 2023 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

Advocacy, Mental Health

Mad Liberation: The Missing Piece of The Puzzle

Posted on May 19, 2023 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.

Advocacy, Mental Health

10 Reminders for Mental Health Week

Posted on May 15, 2023May 15, 2023 by Millie :)

This week is mental health awareness week here in the UK, and it’s mental health awareness month in the USA. Therefore you’re likely to see a lot of information – and misinformation! – floating around. A lot of people making gestures towards mental health, and hollow gestures too. I’m obviously a mental health advocate all year round, and I’m also neurodiverse, mentally ill, and disabled all year round. So it’s not just a week for me, and in fact this week can be difficult for me because instead of showing me how far we’ve come it becomes glaringly obvious to me how far we still have to travel. It’s frustrating to see people posting hotline numbers, empty phrases, and self care tips without even hinting at the deep issues surrounding mental health. To be clear, I don’t blame individuals, it just reminds me how frustrated I am with the system.

So today here are 10 reminders of things you might not be hearing so much this mental health week that we still need to keep in mind:

1. The mental health system is failing, and inherently linked with the criminalisation of mental illness. You cannot simply fund a broken system

2. Psychiatry is used to uphold what society deems as acceptable

3. There is a lot of psychiatric abuse, which continues to go unknown by many. We must listen to psych survivors, who have been systematically silenced for years

4. Yes we all have mental health, and that is very important. But choosing to focus on the palatable narrative that goes along with ‘we all have mental health’ tends to ignore the chronically mentally ill, mad, and ostracised. Essentially, if you are talking about mental health you also need to talk about the parts that aren’t as easily digestible

5. The goal of healing should not be productivity

6. We cannot stick a bandaid on the mental health crisis without addressing the deep underlying socioeconomic problems in this country

7. We cannot heal in a vacuum. Community is needed for good mental health

8. This is actually a life or death issue for many people. We don’t have to get dragged down in the sadness of that all the time, but it is important to remember the gravity of it

9. If everyone needs therapy then society is sick, not each individual

10. Diagnosis and/or medication do not work for everyone

Thanks for reading! Sending so much love and support to you all today xxx

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

Hurt by Psychiatry

Posted on March 31, 2023March 31, 2023 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