Posted in Managing Mental Health, Mental Health

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

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 Mental Health, Personal Growth

Fear of Going Crazy

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 Mental Health

Songs for my Bipolar Experience

Music is a really important tool in how I connect to the world; I have music or a podcast playing nearly all the time for sensory reasons. Like with all creative arts, music can help us connect to others, express our experiences, and change or reflect our moods. There are some things about my experience that I feel communicated in songs more deeply than I ever good in words of my own. 

So today I thought I’d share a playlist of sorts with songs that I feel connect with parts of my experience with bipolar disorder. They may be helpful in understanding what it’s like for someone else, or yourself, but they’re also really great songs so I would recommend giving them a listen! But obviously music can be quite powerful in how it makes us feel, so please use your own discretion. Let me know what you think of them in the comments below, and if you relate with any yourselves.

  1. Control by Halsey 

Captures that feeling of dangerous energy that comes along with my experience; the desire and lack of control 

  1. Piano Sonata No.14 in C# minor, Op.27 No.2, Moonlight – Presto (aka. Moonlight Sonata Movement 3)

My favourite version is played by Daniel Barenboim, I think he really conveys the emotion of the music. Such a beautiful piece of music that encapsulates the feeling of (hypo)mania for me, the energy and beauty and pain – I can find all of it in this piece 

  1. Light of Love by Florence and The Machine 

This song resonates with a sense of healing for me, and gives me the power to keep going sometimes. It helps remind me that I am still me inside

  1. The Sounds of Silence by Simon and Garfunkel 

I know it’s become a bit of a meme song but the lyrics and harmonies of this song are truly amazing. I find it resonates with my experience of depression, especially the feeling of slipping back there again 

  1. A Reason to Fight by Disturbed 

I mean the title says it all really. A powerful message of support and willing to stay and fight when it all gets too much 

  1. Both Sides Now by Joni Mitchell 

In my opinion one of the best songs ever written. It has so much love, care, and growth in it and resonates with me differently every time I hear it. It reminds me of how I feel I change and grow through each episode, and the wholeness and seasons of life 

  1. I Miss the Mountains from Next to Normal 

This musical is about a family where the mother has bipolar disorder and this song captures a sentiment I don’t hear talked about very often – that you can actually wish to go back to a time when it was worse. There’s a certain numbness and difficulty in adjusting to being ‘ok’ and a grief of life not lived, and this song really holds that message in a gentle way 

  1. Girl Anachronism by The Dresden Dolls 

This song represents so much of the feelings of (hypo)mania for me, and what that itchy energy is like, not only at the time but also how the illness as a whole makes you feel set apart from the rest of the world sometimes; how it is a huge part of our lives and our identities

  1. A Safe Place to Land by Sara Bareilles 

This song is comforting to me in a lot of situations, especially when I’m overwhelmed or hopeless. It’s full of support and helps me feel held; like it can get better again. It reminds me I’m not alone

  1. listen before i go by Billie Eilish 

Really encapsulates a feeling of hopelessness in depression 

  1. She Used to Be Mine from Waitress 

This song has been so immensely important to me on my journey, especially with addiction recovery (something a lot of people with bipolar struggle with). It holds both grief for who we used to be and a desire to fight and become who we can be. I just love it. 

  1. Quiet from Matilda The Musical 

Again this really carries the sense of what it is like in my brain when mania starts to kick in, thoughts flowing from one to the next so quickly and loudly and how that can bring such anger. But also the calm end to the song captures a part of my experience I can’t even explain but is so very very real, and almost beautiful 

  1. Everybody Hurts by R.E.M

Comforting and well known, I listened to this song on repeat as I was dragging myself out of one of my first depressive episodes 

  1. Sky Full of Song by Florence + the Machine 

Somehow carries a sense of both depression and mania for me – the exhaustion from going and going, pretending to be ok, not knowing you’re not etc etc. It is a song of pause and reconnection to myself 

  1. Hallelujah by Jeff Buckley 

Obviously there are many other versions of this song but the feeling this version gives me is unrivalled. It mirrors that desperation of that desperation in depression for me, without actually making me feel depressed listening to it 

  1. Clown by Emeli Sandé

Feel like it spans a lot of different experiences in life and trying to reckon with them, but for me it also helps process the difficult feelings that come with facing the consequences of things that have happened/ you’ve done in an episode (or in addiction)

If you liked this post, please let me know as I have many other songs that resonate with different parts of my experience and I love sharing them! Sending love and support as always xxx

Posted in Mental Health, neurodiversity

Mania @ 5:15am – A Poem

I’ve written a bit before about how important creativity is to me in my mental health journey. I think creativity’s power is often overlooked. It’s expressive, healing, connecting, expanding and freeing. I think sometimes too sharing creative works can present ideas we may not otherwise be able to share. So here’s another one of my poems, written about my experience with mania:

Mania @ 5:15am

I see a girl running in the rain clothes pressed up against her body like an embrace from a lover she’s forgotten or hasn’t yet had it doesn’t matter she is wild and she is free and she is crying tears it could be ecstasy it could be the crashing waves pounding in her soul it could they flood her heart her mind it could be drugs she can’t remember what she was doing BRIGHT there is only now she is running the other people’s eyes burn something like concern or envy she keeps running there’s blood and bruises each drop of rain tastes like gin on her tongue they are every shout she’s ever heard she is drunk on life her feet pounding are like every hit she’s ever endured punching in at work her at home no confines don’t exist she learnt the best tactics she plays the game and never loses she wins by losing every inhibition sense of self it is a mask feet gliding like she’s flying air lifting she’ll never need to breathe again not ever all is in this flight her plight ongoing shriek of breaks on wet tarmac like a shattered plate thrown at the head of an eight year old unsuspecting she’s young all the wisdom of a thousand years old keeps running keep running can’t be caught she’s the leader corruption of every leads the way to BRIGHT hope to know it

life live

Running don’t 

slip.

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 Mental Health, Personal Growth

Letter To A Younger Me

Hey sweetie, 

I’m writing you this letter because you’ve been on my mind a lot lately. And the thing is, I know you won’t actually read it, you can’t, I can’t actually travel back and give it to you. So there’s no real point in me giving you advice; any advice I do write is, I suppose, more of a reminder for me now – born from the gifts you gave me just by keeping going. Yeah, this letter isn’t really for you. It’s for me now, or us now. To heal a little bit and reflect in a way that doesn’t consume us back to where you are. If that makes any sense? 

I want to comfort you. I want to hug you, hold you tight, and whisper ‘I’ve got you’. Which is something to remember when you feel like the worst person ever, because eventually we’re able to look back and show ourselves compassion. I know it hurts. And I know you feel really lonely, I know. 

I think I’m writing this to you at about age 13, maybe just turned 14. Right as all the mental health stuff really took off, and before you’d gone through enough of it to have any perspective on it. It was all new and you had no reason to think it wouldn’t last forever. But, hey, spoiler alert – it doesn’t last forever. I won’t lie to you, it does get worse. And then maybe worse again. And again. But there’s this magic process you haven’t come across yet, where even though in some ways it gets worse, it never feels quite as bad as that very first time. Because you’re growing and learning and after you survive it once you always know, deep down inside of you, that you’re going to survive it again. And you’re going to learn all these little skills – and big skills! – that help you get through. You’re going to be ok. Maybe not always, but you are going to be ok. 

I would say please don’t drink, but if you’re 13/14 it’s already too late for that. So I’ll say this instead: you know how you always knew, from when you were really little, that you didn’t want to drink? And you were adamant that you never would, and you always thought if you did it wouldn’t end well, but you didn’t know why? Well, that was your gut instinct, and it was a good one. Learn to listen to your gut – it very rarely serves you wrong. So I know you’ve already had a drink, and done some other things, and I know it feels really great right now. I also know I can’t change what happened (or is going to happen, from your perspective). So I’ll say enjoy it while you can. Enjoy it while it’s fun and have those memories that we treasure. The world is a confusing place; it’s a paradox and time is a funny thing – things can be both good and bad. But listen, when it gets too much, know there is hope. Know that this isn’t going to be forever, and you are going to be ok again, I promise. I promise you the madness it’s going to cause is not going to rule your whole life. And I promise you that one day you’ll actually be grateful for it, strange as that may seem. 

But that’s a few years away yet anyhow. For now it might be more relevant to say that food isn’t the enemy and that you are allowed to take up space. You are allowed to exist and feel and show that you feel. I know right now a lot of your time is taken up thinking about food, and actually you don’t even think that’s a problem yet. Well, you’ll figure it out. There’s a lot of cycles and waves in this life, and you’re gonna ride every one of them out. And you’re not going to do it alone. 

In a few months you’re going to meet this amazing person – she’s a bit crazy. I’d like to say thank you for trusting your gut instinct that first day you met her; the one that says ‘this person gets me’. She does. She’s going to help you. And that’s also going to unleash a whole load of other sh*t in your head because once you open the floodgates of emotion, it’s hard to close them. But you’re not going to be alone. Lean into the people who help you, even when it feels uncomfortable and you’re ashamed to do it, because one day you’re going to be able to show them it was worth it. You are going to meet like-minded, supportive people, and make true deep friendships. Loneliness isn’t going to go away completely, I doubt it ever does, but slowly you’re going to learn to make connections and redefine what that means for you. It’s a process we’re still going through – and we’ve come to appreciate it’s actually kind of a wonderful thing that learning is lifelong. You never stop growing. 

I want you to know that I forgive you. I forgive you. All the unforgivable things that make you think there’s no point, the whirlwind of self-destructive hate that spirals out to others – I forgive you for all of it. You are doing the best you can. And one day you’re going to be able to do better. And in 5,10,15 years you’ll be able to do better again! So I not only forgive you, but I thank you for trying so damn hard to keep going when it all seems impossible. 

If I could actually give this letter to you, the one thing I would probably most like to say is that you’re autistic. Surprise! You’re going to find out in about two years and it’s going to make a whole lot of sense and it’s going to change your life. It’s going to be a catalyst in helping you to understand yourself and learn to exist in this world. Because you’re not broken, you’re living in a world that wasn’t built for you. So when in a few months the whole world comes crashing in around you and you can’t be the perfect A* student you built your identity around (don’t worry, it’s actually a blessing to get to rebuild your sense of self and be able to do other things), know that you are allowed to express your needs. You are allowed to be tired and burnt out and unable to carry on at that level without support or understanding. You are allowed to take up space – I’ve said it once, I’ll say it again. 

Ok, what else would you like to know? We’re still obsessed with Carrie Fisher. You were right, we do have a developing mood disorder. Also anxiety, a lot of it. Oh! You’re going to act! You’re going to see your dreams becoming reality and it’s going to feel even better after all this hurt because you’ll understand how precious it really is. You’re actually quite funny, and it wouldn’t hurt you to trust that you can lean into your comedy every now and then. You write a lot, including a lot of poetry (we like poetry now). You went around Europe on your own for 2 months at 17, just like we’d always dreamed! You run a mental health space, have been on a podcast, won an award. We’re still gay. So yeah, you’re ok. You’re not perfect, no one is, so it’s ok to stop chasing that idea of perfection. And you don’t need to do crazy, harmful things to gain other people’s approval and affection. Laughter is the key to making it through rough times – you have to be able to find life funny. Oh and also – not everyone can hear colour?? We were 15 by the time we realised that! 

I love you, always, through all of it. You’ve got this, even when it feels like you don’t. And I’ll be waiting right here for you in a few years, 

Love, 

You.

Posted in Advocacy, autism, Mental Health

Diagnosis – Good, Bad, or Dependant on the System?

Validation:

It can be very hard to access treatments and be validated by ‘professionals‘ within this system without a diagnosis. Budget issues and a mental health system based in oppression that seeks to produce productivity rather than healing and often doesn’t recognise its intrinsic links to all other aspects of capitalist society doesn’t help this. However, more importantly, without a diagnosis it can be hard to validate ourselves – to give ourselves permission to display certain symptoms, feel what we feel, and believe that it’s real.

Getting a diagnosis can be a validating and liberating experience for many people – my autism diagnosis certainly was for me. It helped me understand myself, put my entire life into context, and connect with other people going through similar experiences. That was incredibly useful with all my diagnoses – finding people going through the same thing and learning how they were managing in a world often not built for us which helped me find ways to define and facilitate my own healing. Community truly is a powerful force. It teaches us that we are not alone, and is one of the most invigorating tools in supporting mental health; my diagnoses are helping me find mine.

But we must ask the question – why do we lack validation without a diagnosis? Why have we not been taught validation and community by the systems surrounding us? If human experience was universally understood as fluid and acceptable, would we need diagnoses at all?

Stigma and Stereotyping:

However, diagnoses have also been used as oppressive tools throughout history, and being given a diagnosis can be a terrifying experience. For example women could be put into mental institutions if their husbands thought they weren’t living up to their duties and this was justified under the label of hysteria. Nowadays Black women are significantly more likely to be diagnosed with BPD – this may be a misdiagnosis of a neurodivergency (chronically under recognised in Black people) or due to how their traits and emotions are perceived so different within the system. Black people are also four times more likely to be detained under the Mental Health Act in the Uk – a hugely oppressive tool that twins criminal incarceration.

It may feel like a condemnation to receive a diagnosis due to preconceived notions of stigmatised mental illnesses, and lack of care options. Sometimes it can seem like a lifetime of suffering and inevitable failures lie ahead. It may even be harder to be taken seriously within the system – especially in psychiatry wards where any legitimate complaints can be brushed off as ‘symptoms’. Telling family and friends may elicit negative reactions due to their preconceived ideas, regardless of how positive the experience was for the individual

Stuck in a Box:

Although it can be liberating to understand your behaviour through the lens of a diagnoses, it can also be challenging when dealing with others and interpreting your own experience. It can be difficult to know where you start and where the illness ends, or to what extent you should view yourself as your illness. It can be difficult to know whether an emotional reaction is ‘natural’ or a symptom or a potential warning for future issues. It can be difficult to be heard and seen as anything but your diagnosis and your experiences as anything separate or unrelated to it by others.

Diagnosing a mental illness is not straight forward. No one person presents the same, and often two psychiatrists will have completely different opinions leading to misdiagnosis/ confusion for the individual trying to grapple with many opinions and find understanding.

And yet once given a diagnosis we are often stuck in a box or a more rigid understanding of who we are and how me must think and will behave. Does that seem logical? It doesn’t to me. But it’s understandable within a system that looks for easy processing, and profit – both achieved through the over medicalisation of human distress. 

When the DSM was first released in 1952 there were 102 diagnoses in it. By 2000 there were 365. This has since reduced again – but you can see how inexact and dramatic the medicalisation has been.

Nonetheless, getting a diagnosis, finding community and comfort it in, can be a very positive experience. My autism diagnosis certainly was for me, and being able to say I’m bipolar helps me feel whole and proud of everything I’ve been through. But getting those diagnoses, navigating conversations, therapy, and life with them has been challenging and complicated. And I am privileged in many ways. Bottom line – receiving a diagnosis is not something to be afraid of, and if your experience was good then that is amazing, and valid! But negative experiences are just as valid too. Perhaps even more so because they often fall on the more marginalised. And everyone’s emotions, pain, and trauma are valid with or without a label. We deserve a society that teaches us that.

Sources

  • Sedated: How modern capitalism created our mental health crisis by James Davies
  • verywellmind.com 
  • mind.org.uk
  • Phenomenology of Borderline Personality Disorder, The Role of Race and Socioeconomic Status, Natacha M. De Genna, PhD and Ulrike Feske, PhD
  • My brain
Posted in Managing Mental Health, Mental Health

How to Support Someone With Mental Health Issues

It can be extremely hard to watch someone you love and care about going through a tough time regarding their mental health. It can also be painful if someone close to you discloses their mental illness or mental health struggles and you had no idea about it. You may feel like a failure yourself, like there’s nothing you can do, like you are useless. Essentially it may start to impact your mental health as well. That’s why the most important thing to remember when supporting someone with mental health issues is that you need to look after yourself as well. You have to.

1. Look after yourself

Sometimes we want to rush in and save the whole world – fix everything – but this simply isn’t possible. Perhaps at first it may seem like a good idea to try and take on the other person’s issues entirely as your own, without giving yourself the space needed to process your own emotions. In fact for a short while this may actually help the other person – but that’s not sustainable; long term it will lead to you burning out, struggling yourself or becoming resentful, likely making the entire situation worse. That’s why it’s so important to look after yourself, even if this is just journaling at the end of the day to help you sort out the feelings of the day, or doing a hobby once a week, the possibilities are limitless and you have to find what works for you. The important thing is that you do find it. And putting in boundaries with the person you are supporting can also help this, and most likely will help them in the long run too.

2. Listen to them

Many people with mental health issues, especially when they are first opening up about them, doubt themselves, feel ashamed or invalidated. By listening to them with an open mind you can help lessen these feelings. And by listening, I mean just that. Not everyone wants (nor even needs) advice or solutions all the time, sometimes they just need to be heard so they feel a little less alone. When having a conversation about their emotions/ experience it can be really helpful to ask the question ‘would you like me to offer advice or just listen to you?’. Validating their experience through listening to them can have a huge impact for someone struggling and give them confidence and reassurance. Remember that they are the one that lives in their brain, and they know what they are going through better than anyone else; it’s not your job to dictate to them what they are undergoing. However, linking to my last point, it is important that you don’t take on all of their feelings for yourself, so placing boundaries can be really helpful – for example requesting that before they talk to you, they ask you if you are in a place to have that conversation.

3. Involve them

Going through a tough time mentally can feel very isolating, and our brains can make us feel very lonely and rejected. That’s why it’s important to continue to involve someone who is struggling mentally. This could mean continuing to invite them to social events while making clear there is no pressure or expectations placed upon them to attend. If they accept and invitation, it might then mean making some accommodations for them, like helping them order food if that’s a point of anxiety for them or giving them some space if they need it for example. It might also mean offering to meet them one on one for a while if that’s easier for them, or talking with them about plans to keep them safe and checking in with them regularly. To relate to my last point, if you’re unsure of what to do, you can always ask them if they have any ideas or if there’s a way you can accommodate them better. This is a huge sign that you care for and accept them still.

4. Research their experience

If the person you are supporting has a diagnosis or has disclosed to you specific symptoms, it can be helpful for your own knowledge to research this. A quick google search will bring up symptoms lists and examples of how these might affect them, but I would also encourage you to look beyond this and read up on the personal experience of different people from different walks of life to get a clearer picture. This can help you understand the person you are supporting better without the worry that you are prying to much, and it can help them to feel seen as this informs how you support them.

5. Make them a happy kit

I’ve made a previous post on this, which you can read here. A happy kit is essentially a little collection of things that can help someone process their emotions, get through a crisis moment, or just generally cheer them up. It can include some things that they find calming or cheering, and maybe a list of distractions and mini coping exercises to try. Distractions are also a really great way to help someone with a mental health issue – it’s not a long term fix but it can help them escape their brain for a minute and feel more ready to face the day. If a distraction is creative it could also be a way of helping them to express themselves, and feel less alone if you’re doing it together.

6. Help with small tasks

Small tasks such as cleaning, ordering food, or remembering deadlines can become seemingly impossible for someone experiencing a mental health struggle. If you feel up to it you can offer to help them with these small tasks, even if that’s just by doing it with them (for example cleaning together one afternoon, or going food shopping together). As always, asking them how best to help is always a good idea, and if they’re not sure offering something specific – such as sending them a reminder text – might appeal to them.

7. Show them you care

It’s simple, but one of the most helpful and meaningful things anyone has ever done for me during my own struggles has been showing me they cared. This could mean writing someone a supportive letter, or making them a playlist. Just something simple that lets them know you care.

7. Be patient

We all have mental health and it can be a long term challenge to face for many. Someone in the midsts of a struggle isn’t going to overcome it overnight, but with amazing people like you willing to support them, they can find their way through. Keep in mind that you need to be patient – one of the reasons why looking after yourself is so important – and that their struggles are not a comment on you, ever. Eventually the sun will come shining through!

Posted in Mental Health, Personal Growth

Small Steps

Hey there! 

I’ve been thinking recently on how I can help myself to maintain a better state of mental health, when I’m already feeling a bit better in myself, but also how I can make it easier to lift out of those darker moments. Through some conversations, therapy, and self reflection I have come to appreciate how important the small steps we take to support our mental health are.

However, when you’re feeling particularly blue it can be difficult to even begin to do the smallest things; people can often get annoyed at us for this as well. For me one way of overcoming this is by breaking them down into even smaller steps. For example if my aim is to take my meds, then I’ll start by walking to the drawer, then opening the draw, taking them out, laying them out etc etc. It may seem silly at first – I know for me it almost felt like I was patronising myself – but it might just be of use to try this, and it is a huge thing to take any of these steps so you deserve congratulating for that! 

So what are some of the small steps I’ve come up with to help maintain my mental health? Writing my diary; gratitude and affirmation lists; meds and vits; drinking enough water; walking; allowing myself downtime; using planners to keep on top of work; reading (to make learning fun); making my happy notes; doodling and using fiddle toys; playing piano; meditating and more…

I hope you can find some small steps that will help you maintain your mental health! We all have it and we all need to look after it 

See ya later 🙂

Posted in Advocacy, Mental Health

Funding Mental Health – An Introductory Question

Today’s post is inspired by @jcss.c (insta)

I’ve spoken about funding for mental health systems here before, but I wanted to write a bit about what we want to fund. The mental health system as it is is flawed – I am certain of this – and while extra funding is needed and would help, it won’t fix everything. That is whey when I talk about improving the mental health system I use the word reform.

When we talk about funding the system we need to consider what we are funding. Do we want to pump money into a fundamentally broken system (because it’s been getting worse for quite a while) or do we want to use that money to reform the way the system works, promote independent person led treatment, and then provide resources to help make that happen? 

Here’s some examples of areas that need to be changed: 

  • fatphobia within ED (eating disorder) treatment. That means not having to be under a certain weight to be validated, the mental side of an eating disorder taking precedent, and providing space for people who don’t fit the ‘typical’ ED profile you might expect 
  • Medical racism. This needs to be tackled at all levels and in all areas of society – they all influence each other
  • Inability for medical practitioners to see individuals rather than symptoms. The individual patient matters; they should have a say in their own treatment; all of who they are should be recognised and celebrated. There’s a difference between having to tick boxes and refusing to see anything outside of those boxes 
  • Inappropriate medication/ sedation in inpatient. There should be more resources and a better system of action that doesn’t lead to drugs so quickly, especially if that is against the patient’s wishes 
  • Criminalisation & lack of human respect for people with substance use issues. 
  • Staff who always validate the experience of the patient, don’t rush patients through, tell them they’re not ‘bad enough’, aren’t rude, aren’t tired etc etc etc 
  • Voluntary treatment truly being voluntary. Rather than ‘admit yourself or we’ll section you’ (which happens far too much) 
  • Language changes. Being labelled as compliant or non-compliant, for example, and threatened with no help at all or penalties on freedom in inpatient, when in reality the reasons behind each person’s choice should be explored and respected. They should be helped to be motivated, and if the treatment isn’t working for them, there should be other options 
  • Space for alternative treatments. For example art therapy, drama therapy, animal therapy – just using other methods to get through to patients can be pivotal in their treatment. There should be the ability for this to happen on a wide scale 
  • Recognition of the wider factors impacting and maintaining mental health. Such as money, identity etc

There’s so much more I could discuss and it’s not like I’ve studied this for years, so this is just the opinion I have developed, but I know I am not alone in this. I’d also like to say that I respect any professionals that want to make a difference for someone struggling with their mental health, but I recognise that in such a strange system, it’s often hard for them to do so, and after time that motivation may just disappear. 

If anyone wants to add anything, please comment below, would love to have a discussion on this topic.