Posted in Advocacy, Mental Health, neurodiversity

Ideas On Mental Health Advocacy

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 Advocacy, Mental Health

Mad Liberation: The Missing Piece of The Puzzle

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

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 Advocacy, Mental Health

I Don’t Know What To Do

I sometimes call myself a mental health advocate. I’d like to say I am one, but sometimes I feel like I’m not. Because I don’t know what to do. 

We need more awareness, yes, but actual awareness, critical awareness of how we form our views of mental health and the intersectionality of societal issues. I can – to a point – help raise awareness, and I try to. But if I’m honest it feels a bit useless sometimes. I honestly have no idea how to make tangible change. Of course we can write letters and go to protests – but in the current political atmosphere I wonder if it’s doing anything at all; it’s hard to watch the government become what I genuinely believe is more and more fascist and not know a way forward. Then of course we can also make art, have conversations, create peer connections and connect with nature. This is generally what I focus on because it seems achievable, and I really do believe small changes build up and matter greatly. But underneath it all I am at a loss. 

Why am I telling you this? Because I think a lot of us feel helpless. And because I want to explain why I don’t share more actions to take – because I don’t know what actions to take. It’s something I want to focus on more, and I think maybe a good place to start is by sharing openly that I don’t know what to do. It’s easy for us to sit back and do nothing simply because we are unsure of what to do, or because we are afraid. The sense of hopelessness or helplessness is perhaps one of the most pernicious ills we have learnt; it separates us and takes away our power even further. Of course it’s understandable. How the hell do we stop climate change when the overwhelming majority of emissions come from huge corporations? How do we reform the mental health system when most people are unaware of its issues and the bodies in charge aren’t listening? I don’t know. But I think maybe, just maybe, it might start with people working to build communities again; to build connections again. 

I’m an 18 year old who can barely keep their own head above water some days. But I want to help. I want to connect and be a part of change. I want to listen and learn and build. I’m sure in the future I will think differently about some of the things I’ve already said and written; I’m sure I have and will get things wrong, even cause harm through mistakes. And you know what? That’s ok. Because fear of getting it wrong, of being helpless or not having a voice, are not worth staying silent. All we can do is do the best we know how to at the time and stay open to learning.

I don’t know how to begin to face the systematic issues with mental health treatment. I don’t know how to involve everyone in the conversation, how to raise my own voice without speaking over others. I don’t know if there should be no psychiatry at all (because it is absolutely a harmful system), or reform it, or if it is even possible to reform. I don’t know how we can use language differently and how it might help. I don’t know! But I want to find out. I want to listen to all the voices, I want to learn and I want to have a go. Yeah, we’ll probably get things wrong. But we have to try, right? 

If you have any resources, readings, ideas or anything else you’d like to share to help me (and others) grow in our action, please share them in the comments or via the contact page. 

Sending love and support to you all today xxx

Posted in Advocacy, sobriety

Harm Reduction Introduction

As you may know if you follow this blog, I am sober having struggled with addiction as a teenager. It has been the most amazing thing in my life, but I absolutely know and understand that it is not the path for many or even an option. Even if sobriety is something that would work for someone there can be many reasons why it isn’t possible – namely the inability to access detox units to help them get clean safely, or community resources. For some it can be dangerous to try and get clean without these aids. And I absolutely do not look down on anyone who drinks, uses or relies on substances in any way. 

Who are we to say that prescription use of ADHD meds is different to someone using illegal  substances to get through a day? Who are we to decide what drugs are morally correct or not? No drug – prescription or not – is inherently good or bad. Of course addiction can have devastating effects, I know that all too well. But not everyone’s usage, options, or actions are the same, and it is always a personal journey of how someone uses or decides to get clean. 

You may or may not agree with this, but I encourage you to open your mind to an understanding that drugs are not inherently evil, and there is not an inherently superior drug. Nor are the people that use drugs in different ways inherently good or bad. Some are of course inflicted with the pernicious disease of addiction – and that is devastating. I know and have watched that first hand; it is an awful awful disease that destroys the lives of those affected and those surrounding them. But it is each person’s journey to travel; all we can do is provide support. And just like not everyone who drinks is an alcoholic, not everyone who uses is an addict. The thing that can help all drug users is harm reduction information. 

Whether you self medicate, are struggling with addiction, like to go out sometimes, harm reduction is really important. It takes as much of the physical (and mental) risk out of using as possible. It is knowledge which can be applied to help keep you and others safe. Being informed about drugs is really important. And I know in moments of need, desperation or excitement we may not remember or be able to apply all this information – but I know from personal experience having it in the back of your mind really does make a difference, both personally and in order to help others. You never know when it might come in handy, even if you don’t use personally. 

But harm reduction should also refer to policies that aim to help those using drugs (including those with addiction) rather than criminalising and stigmatising them. 

So here is some very basic harm reduction information to be aware of, with some much better websites linked below. I personally really like Frank – it gives a clear breakdown of names of different drugs, how they feel, how long their effects last, risks etc. It’s super useful to know of and be able to share with others when they have questions. 

  • Naloxone – Naloxone goes by a few different names including Narcan, Prenoxad and Nyxoid. It’s an emergency antidote that reverses the effects of an opioid overdose (from heroin, fentanyl, codeine, methadone, morphine etc). It is widely available to get in the US and is becoming easier to get in the UK (now available as an over the counter medicine). It is lifesaving, a very good thing to carry around with you especially if you are around people who are at risk of an overdose. You can get Naloxone in the US for free here, along with free fentanyl test strips to make sure you’re not being spiked or your drugs cut with it. For more UK information click here, or type naloxone and your area into google
  • Overdose signs – Knowing the signs of an overdose is also extremely important, so you can know if to use naloxone, call for help etc. Here are some signs of opioid overdose: pinpoint pupils, blue lips, pale skin, shallow breathing, snoring, unresponsiveness. Cocaine overdose signs and warning signs: elevated heart rate, rise in body temperature, pain in chest, nausea and vomiting, severe panicking, delirium, irregular heart rhythm, seizures. You can google the overdose symptoms of any drugs that may be more relevant to you or those you know to be informed. Bottom line is if you know or suspect someone has taken drugs and are now suffering from severe physical symptoms, it’s time to call for help 
  • Calling an ambulance – It’s important to know that if you call an ambulance for a suspected drug overdose, they are not going to call the police. In almost every case they will only call the police if there is another reason to warrant this – usually if the ambulance crew is being threatened. Their job and main concern is to treat the overdose. Saving a life should always be the top priority for someone so please please do not hesitate to call for help – you can find more information on what to do in the case of a suspected overdose here
  • Learn the recovery position – Honestly this is useful for all areas of life so just do it 
  • Needle Safety – you’ve probably all heard about not sharing needles. What you might not know is that many areas in the UK and US offer services such as needle exchange programmes to help safely and legally supply clean needles. If this is relevant to you it’s worth looking into 
  • Taking MDMA – Molly is a popular party drug, but it is getting stronger. I know we can all have some idea that something bad could never happen to us, and it’s true you are more likely to be ok than not. But it’s worth mitigating the risks. If you’re taking ecstasy it’s best to take a quarter – half at most – of a pill first, or dabbing a bit of powder to start feeling effects before taking more. You may find it’s enough. Also many people don’t realise that drinking any fluids (including water) can be dangerous on ecstasy because it can cause the body to release a hormone that stops it from making urine. Users should drink no more than a pint of water or non-alcoholic drink per hour. 
  • Mixing – Mixing drugs without knowing how they interact is one of the most risky things with using – including drinking alcohol while using other drugs. Before you mix drugs just have a quick look to see how they interact. Frank has really clear information on mixing below each drug so it’s a quick way to find out if you’re safe or not 
  • Drug testing kits – Buying illegal drugs means not knowing if you’re getting what you think you’re getting. Even if you’re buying from someone you have bought from before, you don’t know what you’re getting for sure. But don’t worry! There are loads of drug testing kits available to see if your drugs have been cut or are what you think they are. Just look up what you need to test and you’re likely to find results; local drug services may also offer free testing kits, and in the US you can get the fentanyl test strips for free from End Overdoses as mentioned above

So there’s some very brief and basic information for everyone. You probably know what’s most relevant to you, so here’s some great links to explore with way more specific information. Stay safe and full of love! Xxx

https://www.talktofrank.com/

https://endoverdose.net/

https://www.mind.org.uk/information-support/types-of-mental-health-problems/recreational-drugs-alcohol-and-addiction/drug-and-alcohol-addiction-useful-contacts/

https://harmreduction.org/about-us/principles-of-harm-reduction/

https://www.drugwise.org.uk/harm-reduction-2/

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

Hurt by Psychiatry

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

Posted in Advocacy, Mental Health

Write to MP About Mental Health System

Writing letters to our MPs about important issues can feel like hitting our heads against a brick wall. I get it. Our government is failing us in about every way possible at the moment while continuing to introduce increasingly more constricting and draconian laws that limit our freedoms and right to democracy. Nonetheless, I still maintain that there may be hope to be found in raising our voices. The more people that stand up against issues the harder it becomes to ignore – and it could even be argued that it’s up to us to believe in hope even when they aren’t giving us much reason to. One of the easiest ways to raise your voice is by writing to your MP. They may not be able to do anything directly or immediately, but they are our representatives and can bring our concerns to the table. Imagine if every person in your district wrote in about the same issue – it would be pretty hard to ignore. Anyone of any age can write to their MP, and you can even email them. 

Our mental health system is in crisis; it’s built on harm and it is perpetuating that harm. And it cannot be fixed just by increasing its funding – you can’t fund a broken system and expect it to fix itself. So we need to raise the alarm and raise our voices. Below I have written a very short template for writing to your MP about the mental health system. To use simply:

  1. Use this website to find out who your MP is and what their email address is: https://www.writetothem.com/
  2. Copy and paste the template below into an email 
  3. Replace the generic details in italics with your MP’s name and your own information 
  4. Add in your own message or questions 
  5. Hit send 

It’s that simple. And it may seem small, but you never know if the small individual actions we take will add together as a collective. It’s worth a try if nothing else. And remember, if they don’t reply or give a satisfactory reply, you can keep writing to them! Don’t let this be an issue that goes unheard. So here’s the template (just a general content warning for topics relating to mental health here such as suicide):

Dear [insert MP’s name],

I am writing to you today because I am incredibly concerned about the state of our mental health system. It is clear to me that the mental health system continues to fail all of us, especially the most vulnerable in our society. As I’m sure you’ll understand this is an incredibly serious issue, with people’s lives at risk. 

The suicide rate in England and Wales was 6.9% higher in 2021 than in 2020, a trend that has been continuing over many years despite supposed attempts by the government to address mental health issues. For example – the rollout and continued expansion of IAPT that is meant to provide early and easy access to psychological therapies but has since been found to be skewing their own data by several studies. The University of Chester found their actual recovery rate to be just 23% by their own measures (which can include clinically insignificant improvements) as opposed to their claimed 46%. However a large meta-analysis found that 23% of patients with depression spontaneously overcome their symptoms in three months anyway which would render IAPT irrelevant. Despite this it continues to be heralded as a success with no one speaking up about the failures and the people it leaves to the wayside. 

That is the most basic level of treatment and doesn’t even begin to reveal the long waiting times, criminalization of mental illness and failures of the Mental health act, abuse within inpatient treatment, how risk of suicide actually increases after inpatient treatment, lack of appropriate and individualised care, lack of any support for young people, or obsession with productivity instead of personal happiness in recovery. Even within the last six months we have heard about the cases of more young people who have died while in inpatient care –  Christie Harnett, Nadia Sharif, Emily Moore, Charlie Millers, Beth Matthews, and Lauren Bridges. People are falling through the cracks, and being actively harmed by the system. People are dying. It is unacceptable and it cannot be allowed to go on. 

[Insert any personal experience or thoughts here]

Therefore I implore you to research more into the truth of the mental health system and the harm it has caused to so many. And I ask you – what will you do, as representative of this community, to raise the voice of our concern about the mental health system? What will you do to push for change? What will you do to support the mental health of young people in this community? What will you do mitigate the compounding and intersectional issues with mental health (ie. racism, food insecurity, transphobia, poverty)? 

Thank you for taking the time to read this letter and I look forward to hearing your response, 

Kind Regards, 

[Insert your name, address, and contact information here – remember, without an address you will not receive a response!]

Posted in Advocacy, autism

Ugly Autism

As always when talking about autism, I want to remind everyone that autism is not a mental illness. It is a type of neurodivergency; this basically means as autistic people our brains think and process information differently to the ‘norm’ that is expected in the world. However autistic people are more likely to suffer with mental health issues, largely in part to the fact that we are living in a world that isn’t built for us. I’ve talked about an overview on autism acceptance before – which you can read here – but today I wanted to discuss the complexity of an autistic experience and how as more people get involved in autism acceptance and advocacy (which is an amazing thing that I am thrilled to see!) we must keep in mind the spectrum of experiences and therefore the complexity of the necessary solutions.

Sometimes my autism isn’t pretty. I can still fit into the world as I am expected to, but that comes with effort which often goes unseen or under-appreciated. I can do this reasonably easily compared to some, and this is in part due to other aspects of my identity (such as my race) and the supportive people who surround me. You can view this as lucky or not; I think in a way it is unfortunate. It’s unfortunate that I have to manipulate the very essence of the way I think in order to fit into systems I often have no desire to engage with in the first place. I think it’s unfortunate that we can even frame this as ‘lucky’ because that just points to how painful life is for those who can’t, and how this pain is worse than the struggle of concealing one’s true self. While I do frame my autism as my superpower sometimes, I do not believe in the rhetoric that it is a blessing – this also lends to the rhetoric that it could be a tragedy when in reality it just is what it is. I frame it as my superpower personally because that helps me cope with its challenges, and because being autistic is so central to my identity that embracing it in a society that often doesn’t is radically self loving for me. My mental health issues are not the same as me being autistic, but since autism affects how I process everything they are of course intertwined and I have no doubt that being autistic in a world that isn’t has been part of how bad my mental illness has gotten and how confusing it has been to understand. In particular I think my early experiences of mental health issues (before they developed into a clear mood disorder of their own) were heavily intertwined with my autistic experience.

So why am I telling you all this? To give you the smallest cross-section of just one person’s autistic experience, and the complexity of even trying to begin to comprehend that experience, so that you might begin to grasp how neurodivergency and the way it is approached by society is not something that can be easily defined or explained. And that is essentially the point of this post. There are more conversations happening around neurodivergency now then ever before – and that is a joyous and wonderful thing! But these conversations cannot be dulled down to a single Instagram post, or a single profile of autism – which threatens to be the most easily palatable representation of autism. Think of how mental health awareness is sometimes boiled down to self-care, bosses offering a free yoga class to their employees, and pity for the people who can’t socialise but can still just about get through a days work. This kind of awareness fails to recognise or help those suffering in ways that are uncomfortable for us to hear about, or impede how they might function in the systems they are expected to – it doesn’t help the person who has to take a year off work, nor the person who has to call an ambulance because they are convinced they’re dying, nor the person who lashes out at others with angry words because they can’t deal with their inner turmoil. I don’t want a similar pattern to happen as we see more autistic and neurodivergent awareness and representation. We can’t afford to ignore the messy parts of autism that might make some people a bit uncomfortable, or the fact that many neurodivergent people can’t (or don’t want to) participate in traditional capitalist structures that aren’t set up to support them. As there is more awareness, we must show the full array of autistic experiences – from all races, with comorbid mental health issues, different traits, physically disabled autistic people etc etc.

Autism and neurodivergency can’t become something trendy, like a new kind of personality test for CEOs to try and enhance their team and their diversity. They just need to become tolerated, known, understood. Because neurodivergency isn’t always palatable; sometimes it’s messy and it’s different and we have to make sure we don’t run the risk of autistic and adhd people who can more easily fit into the societal expectations (and who want to, because not everyone does) getting ahead and heralded as some liberal caring symbol for employers – for example, while others continue to be ignored. 

Posted in Advocacy, autism, Personal Growth

Autism is My Superpower

I’m autistic. Having autism in a neurotypical world is not easy because generally the world isn’t built for us and proves to be confusing, but for anyone struggling with their diagnosis/ symptoms (and any neurotypicals unclear on the individual nature of autism) I want to make it clear that having autism isn’t a defect. Nor is it a mental illness. In fact, it can be a bonus in many situations, and when accommodated to autistic people can provide new perspectives and skills to the benefit of others. I, for one, like to think that my autism is my superpower, and this is my personal experience:

I learnt to ‘mask’ my autism – consciously learning how to act and react from other people’s behaviour; having to put effort into learning social rules that came naturally to others. Masking can be exhausting, so I know it’s essential that I take breaks and find time for myself, but like a superhero in a costume, it can also be powerful. How? Because my passion is theatre, and when I become the character I act out on stage, I am easily able to slip myself into their shoes – I know how they would behave and why. It comes effortless to me. The misconception is that autistic people are like robots and can only slot into certain careers. In reality we are varied like everyone else, and our uniqueness is incredible. We exist in every identity there is: every race, every gender, every sexuality, as parents and children. Our variety is often overlooked.

My increased sensory input is a key feature of my superpower. I observe more, hear more, taste more. This translates to a benefit in so many situations. You don’t know your train time? Don’t worry, I glanced at the board quickly and noticed it. You’re lost and don’t know the way back? Don’t worry, I spotted landmarks along the way, I know where we’re going. You’re trying to remember where you put your glasses? Never fear, I spotted them. And if we’re thinking about sound and music, my greater sensory input comes to my aid once again – that along with my ability to spot patterns as part of my autism, and my synaesthesia (which is far more prevalent among autistic people than the general population). When I hear a piece of music, it is alive to me. It is full of colour, I hear every layer of the rich instruments, and I can see the patterns the notes are forming. If I want to then play that piece on piano, I need only translate the pattern onto the keys – give me a bit of time and I can paint the picture I hear all by myself. This is my superpower. 

Not to mention the fact that I am quite simply neurodivergent. I think experience the world in a way that is different to ‘the norm’, or rather the majority. Why is this a feature of my superpower? Because I can come up with new ideas and perspectives that may have been overlooked or not thought of at all. In certain situations this can become the way I overcome challenges or help others to do so; in the right combination my divergent thinking could be innovative. Us autistic people have a place in this society, no matter where our traits lie on the spectrum, and if we are accommodated we may even be able to offer solutions, certainly valuable contributions at the least. 

Like a superhero may have an emblem, sign, or symbol, I have my stims. By stims I mean self stimulatory behaviour. Why is this so amazing? Well, it indicates to me how I am feeling (different stims, like tapping my fingers on my palm or twirling my ankle, correspond to different moods). Not only this, but should I start to feel an uncomfortable emotion, stimming freely can help calm me down. There’s a lot of people out there that don’t have something so simple in their toolbox, so this is powerful to me. It’s also such a pure form of expression, and can even help me release my creativity, tapping into my flow. Furthermore, my stims evolve over time – hitting my head morphed into covering my head and now I need only put on a hat to feel at home. How awesome is that? 

This barely scratches the surface of my positive autistic experience, but I hope it has enlightened you. Autism is not a bad thing – quite the opposite. And the beautiful part of it is that no one autistic person’s experience is the same as another. We have a place in this world, and we’re not going anywhere, so the more that neurotypicals begin to understand and help us meet our needs, the more we can give.

Posted in Advocacy, Mental Health

Reducing Mental Health Stigma

I have been fortunate that I have not personally come up against too much explicit stigma throughout my mental health journey so far – and when I have, there has been an incredible amount of supportive people surrounding me. However just a quick trip online reveals how much stigma still exists around mental health, and backhanded comments such as ‘just snap out of it’ or ‘you don’t look mentally ill’ are far too common. Sometimes I am afraid that I will be left out from job opportunities or educational experiences in the future because of my struggles. And so it is important to me, for my benefit and the benefit others, that I do what I can to reduce stigma in my advocacy. For me that means sharing my story, educating myself (especially on the intersectionality of mental health in society), and being open in conversation. Here is my quick guide on what anyone can do to reduce mental health stigma.

  1. Change your language

It might insignificant, but language holds power. What I mean by this is avoiding calling someone who is mentally ill ‘crazy’, and instead validating their experience. Another way to adapt our language is to avoiding using conditions as adjectives. For example instead of saying ‘I’m a bit OCD’ say ‘I like things to be tidy’, and instead of saying ‘She’s so bipolar’ say ‘she’s a bit moody today’. Changing our language can signify a shift in how we approach topics, and encourages us to be more mindful of how what we say can impact someone.

2. Educate yourself

Education is a powerful tool. Educate yourself on the warning signs of mental health issues, different conditions, and the reality of the lived experience of those struggling with their mental health (they’re not the dangerous, horrible people that some media may lead us to believe they are). And educate yourself on the fact that everyone has mental health, and everyone deserves to look after it. Furthermore, educate yourself on how mental health is intersectional with identity and social issues. Here is a post from my instagram that has some basic statistics on this.

3. Listen

When someone speaks up about their mental health, listen. Actively listen. Do not try to shut them down or tell them to toughen up. Listen to what they need and what they are experiencing.

4. Speak up

If someone says something ignorant in a conversation about mental health, try to gently educate them. If you are able to, speak up in your workplace or school to ask for better training for employees on mental health, and policies to support employees/ students.

5. Speak to power

Sign petitions that lobby for better and more inclusive mental health support nationwide and in our communities. Write an email to your MP (or other political representative) about improving mental health systems.

8. Support mental health charities

Whether this is by donating, sharing their campaigns, or engaging with their programmes, their work is so important.

7. Carry openness in your life

Include people in your workplace; continue to invite friends with mental health issues even if they don’t always come along. Treat everyone with dignity and respect, and offer them encouragement in their day to day life and when seeking professional support. Never blame anyone for their struggles. Be kind.

Thank you for taking the time to read this post. All of my love and support to you today,

Millie xx