World Mental Health Day 2023

I wrote this post last year (2022) and I’d left it stopped dead in the middle of a sentence. I found the draft last week and felt that it still accurately described my thoughts and feelings about today so I’ve finished it off and added the last paragraph. I’ve not updated the middle so all of that is written exactly as it was a year ago so all of the ages, timescales and talk of the present or “recently” are a year out as it made most sense when read that way. Only this current paragraph and the last paragraph were written today.

Today is World Mental Health Day. It’s a day I increasingly dislike. I’ve been mentally ill for exactly half my life and in that time I’ve seen awareness of mental health skyrocket but attitudes towards mental illness aren’t changing half as much. We seem to have sanitised it, spread it to the masses, because we all have mental health, just like we all have physical health and so we all get to have an opinion about it. Year after year we get to read empty, vacuous articles about the benefits of exercise and a healthy diet and while these are true and accurate, they’re rife with assumptions, unacknowledged privilege and stigma. You see, I didn’t become mentally ill because I ate too much pizza or didn’t go for enough walks in the park. I became mentally ill for all sorts of complicated reasons that don’t fit nicely and neatly into a feel-good article. My mental health is on the floor and no amount of awareness of that is going to help me or any of the other mentally ill people I know. I’m so far beyond mindfulness and a set bedtime.

Just this week I experienced what I assume was a flashback. I’ve never had a full-blown one of these and let me tell you, despite being aware of them for years and working with people having them, I was unprepared for how visceral and all-encompassingly awful it would feel. I knew they were awful, I’ve seen people experience them and it’s terrifying trying to reach them, trying to bring them back to the present, trying desperately to help them feel safe but it wasn’t something I’d experienced fully before and here it was, 16 years into being mentally ill and it still throws up the most hideous surprises. Awareness can’t possibly prepare you for what these things are like to experience: to hear voices that no one else can, see things no one else can, re-experience things you lived through over half your lifetime ago, feeling an absolute sense of dread and fear so strong that you wish that you’d die, feeling urges to hurt yourself in horrible ways just for a momentary break from the pain you’re mentally going through. None of these things are mentioned in the mental health awareness day posts because they’re not tidy, or clean, or pretty. Most of us who are mentally ill feel hugely stigmatised by this awareness day, like the other minority groups who also have to sit through awareness days, weeks and months where companies, businesses, politicians and individuals all declare that we need to be aware, that it’s ok not to be ok and to reach out for help and it all just fades into the ether and dissipates as the awareness period comes and goes and we go back to ignoring the issues and back to placing personal responsibility on those suffering. I see people every year getting more and more frustrated by this day. I thought it was just me. I thought I was being ungrateful, intolerant, but clearly I’m not, it really isn’t good enough and falls so far short of where we need to be. We don’t even have a Mental Illness Awareness Day, there are days and weeks for specific conditions but those split us up, put us into boxes and factions rather than uniting all of us who experience mental illness and being able to share our experiences of that to create awareness and shared understanding.

There’s a huge movement online where people are reclaiming the word Mad and it’s something I subconsciously and somewhat inadvertently did when I named this blog. I’ve always described myself as mad because it’s how I feel. I don’t feel “normal” or “well” or like I did before I became mentally ill. There’s a big push to move away from medicalistion and descriptions of illness and disorders and this isn’t something I personally feel able to subscribe to because I feel ill and definitely feel disordered but that doesn’t mean that I think there’s something fundamentally wrong me as a person. Who I am is not disordered, who I am isn’t due to illness but my experience of the world is marred by illness, like a really crap pair of sunglasses, it tints my view of the world and changes everything I experience, it’s all viewed through the lens of anxiety and often depression too. Madness is often used as a slur, so much as I describe myself as it and some of those closest to me do on occasion too, it’s not something that I’d expect others to describe me as because they’re unlikely to understand the nuances I live with and the ways in which my madness affects me. Equally, I’d never describe someone else as mad unless they self-identified that way and I knew them exceptionally well. I don’t view mentally ill people in that way. It’s hard to explain and I’m not sure that all of the ideas are fully formed in my head yet. It’s a work in progress.

The difficulty with this day is it never just sticks to mental health and always slightly strays into mental illness territory but those of us who’ve firmly set up camp there often feel like outsiders and pushed out by the rhetoric of this heavily sanitised version of mental health and illness. People don’t like thinking about the fact that although there are protective factors and things that you can absolutely do to improve your own mental health, that won’t necessarily protect you from mental illness. Some people are dealt much riskier hands than others but ultimately there’s always an element of risk and it’s not a person’s fault if they become ill, they’ve not done something wrong, they’re not to blame. Huge numbers of mentally ill people exist within our society and they’re being let down at every turn. Funding is cut, treatments withdrawn, postcode lotteries dictate what services you can access and you have to be ill just the right amount to access treatment and if you have multiple conditions or diagnoses then you might as well not bother because none of these systems join up anymore and so you have to split up your symptoms, your experience, and neatly fit it into a box in order to access 6-12 sessions of something designed for one, mild condition. None of this is how humans work. None of this is humane. Mental health is not mental illness just like physical health is not physical illness and we do a disservice to everyone when we meld the two together. So often the term mental illness is nowhere to be seen. I recently discovered the phrase “mental health illness” which made me double-take because I thought I’d read it wrongly. By removing illness from our language you add in shame as if it’s wrong to be ill or that we’re deficient in some way, it doesn’t make the symptoms, the lived experience, any easier to handle but it makes it more comfortable for society to describe us in these ways and to minimise our struggles. Mental illness isn’t polite, or neat, or simple, it’s often not manageable, it’s overwhelming, it’s exhausting and using ever-softer ways to describe it, mental ill health, mental health illness, just puts separation between you and the sufferer but it doesn’t lessen our suffering. I often feel like I’m banging my head against a wall when I post here because I feel like I just say the same things over and over again. I second-guess myself and often talk myself out of posting all together or even writing because I don’t want to keep saying negative things, I don’t want to keep sharing a bleak message or coming across as ungrateful but I, and so many others like me, are so tired of screaming into the abyss, telling society what we want and what we need and still being bombarded with these vacuous awareness campaigns that do nothing but stroke people’s egos and allow companies to virtue signal.

For me, Awareness of Mental Health needs to begin with awareness of Mental Illness. We need to identify illness early and treat symptoms quickly. We need more trauma-informed approaches and we need to stop dismissing the traumatised and invalidating their experiences. We need quick access to a multitude of different treatments because we know a one-size-all approach doesn’t work and yet that’s what we’re increasingly pedalling now. We need timely referrals and assessments for Neurodivergences and these need to be screened for as standard. Research shows that at least 20% of all people accessing mental health services are neurodivergent in some way and many aren’t diagnosed as children due to atypical presentations so these need routinely screening for and waiting lists need to be shortened so they’re not years long but months or even weeks. People need to know who they are and this would go a really long way to sorting some of that problem out. It would also help people to access suitable treatments because neurodivergent people often have poor results from CBT and can have varied reactions to psychiatric medications which need to be listened to and adapted rather than dismissed or ignored by doctors who assume they can’t possibly be suffering as much as they’re reporting. We need joined up support with mental health services talking to other services in the local area so that people with housing problems or living in poverty can be helped quickly and robustly. We need funding and research and we need lived experience at the heart of all of this so that we stop doing what we’ve always done in a system that’s unbelievably broken. We need to look at the role that society is playing and realise that mental illness doesn’t exist in a vacuum. If people are worrying about housing, neighbourhoods, bills, employment, physical health or addiction, how are they going to get better?

And for the companies who’ve been virtue signalling all day, I wonder how many of them offer truly accessible employment because I’ve found almost no one does. One of my biggest hopes when covid started changing the world was that it would create permanent improvements for disabled people. I hoped that working from home would stick and that truly remote positions would continue to exist but they’re all fading away and new positions are almost always hybrid at best. As someone who’s severely agoraphobic, this isn’t an option for me and yet so many companies made it work for almost 2 years with almost all of their staff and now I can’t find work because everything is returning to “normal”. This isn’t inclusive, it’s not accessible, and it shows a really distinct lack of awareness of mental health (and illness). I’m capable of specific, limited work, I have been for the majority of the time I’ve been agoraphobic but thanks to how our society functions, I’ve not been employed for 8.5 years and counting. The majority of people with severe mental illness aren’t in employment and for many that’s because they’re not well enough and we need a better, more accessible social security system for that. But for some of us, it is systemic and societal barriers that prevent us from reaching our potential. Applying for disability benefits 2 years ago nearly killed me, it’s a genuinely horrific process that I wouldn’t wish on my worst enemy and it took me months to recover from that experience. We must do better than this, we can do better than this, but the system needs smashing down and building completely differently from the ground up so that we’re no longer putting people through such an undignified, intrusive and inhumane begging process.

I’ll leave you with this – the theme for World Mental Health Day (2022) last year was “make mental health and well-being for all a global priority” and this year (2023) it’s “mental health is a universal human right”. To me, those mean very similar things. A year on, we’ve not progressed, nothing has changed and we don’t even have a plan or a way of measuring that these goals are being worked on, being improved, or achieved. They’re wishy-washy soundbites that sound good, they make you nod along in agreement until you ask yourself, what does it mean? What does that look like? How do we achieve it? The 2023 theme is simply a factual statement, but just saying something true doesn’t make it happen and these statements end up being meaningless. It’s not a call to arms, it’s not a highlighting of injustice, it’s not a concrete plan of how things can be changed or improved, it’s just another nothing slogan that makes companies and businesses feel better when they plaster it all over their social media channels for the day and isolates people like me who know for a fact that we’re years, if not decades away from mental health being a human right. I haven’t been mentally healthy since I was 15, I’ve not received NHS treatment for my mental illnesses since I was 22, I’m now nearly 33 and no amount of exercise, journalling, reaching out, or hot baths has won me back my human right of mental health, but at least you’re now aware of it – I’ve done my bit for the day!

My previous posts written on this day and other awareness days can be found here:

Dignity and Respect – Being Treated Like a Human Being (World Mental Health Day 2015)

World Mental Health Day 2017

Why it’s Not OK Not to be OK – World Mental Health Day 2020

Mental Health Awareness Week – Awareness is No Longer Enough 2021

Why Mentally Ill Children Become Mentally Ill Adults – Children’s Mental Health Week 2022

TW: Non-graphic mentions of Self-Harm and Suicidal Ideation.

It’s Children’s Mental Health Week and I wanted to share a few things because historically, mentally ill children have often become mentally ill adults. I’m one of them. While a mental illness doesn’t have to be a life sentence, if it’s not treated quickly and effectively, it can fast become one. I’ve long been documenting my present and past issues with mental illness and as each year passes I’m shocked by how many years I’ve given up to these illnesses. It’s certainly not been willingly. Thanks to originally being fobbed off by doctors as just another down teenager, who rapidly spiralled into full-blown depression and was then put onto unsuitable medication and given no therapy until I was able to go private 18 months in, I’m left angry and disappointed that I was left to fall so far into the hole of depression. I try not to spend time now wondering what life would have been like for me if that first GP had taken me seriously and immediately given me someone to talk to. Maybe I’d have still spiralled, maybe where I’ve ended up is exactly where I was always meant to, but I have to say, I doubt that!

I was 15 when I became mentally ill. A series of traumatic events led to me feeling unable to cope pretty much overnight. I sought help really quickly but I didn’t get it. Leaving me to deteriorate, for depression to take hold of my developing brain, with no concept or understanding of what was happening to me, leaving me to develop deeply unhealthy and damaging coping strategies that have left life-long marks on my skin, not to mention the scars inside my mind, has altered the course of my life. Where I veered off course into the path of illness, I’m sure I just needed a gentle nudge from the right therapist to get me back on track, to validate my struggles and confirm that life was difficult at the time and to teach me positive, healthy coping strategies to set me back on the right path. Instead, I’ve spent very nearly half of my life mentally ill, constantly sharing my headspace with the most hideous thoughts and feelings. It feels like a waste. It feels so unfair. I look at pictures of me as a child and I feel so sad for that little girl and what her future holds. While there are exciting and wonderful things in my life and those are the things I cling onto, there are so many tinges of sadness and difficulty and everything feels marred by my mental illness.

My anxiety kicked in out of the blue when I was 23. It hit me like a ton of bricks. It cycles up and down, lessening and worsening and morphing over time but never going away. Recently my anxiety has ramped up to a crippling level that has often left me in a crying heap and wondering how to continue because it feels so utterly unbearable. I’m 31 and I still don’t have any coping strategies that reliably work, although I’m proud to say that I have removed the unhealthy coping strategies and work everyday to keep those out of my life. Dealing with such extreme anxiety feels like torture and there are so many days recently where it’s felt like it’ll actually kill me. I get awful physical symptoms which I then become fearful of and the cycle continues and spirals. There are days where anxiety occupies my entire mind, no other thoughts come or go, just fear and panic crashing over in wave after wave. It’s completely exhausting. I often think when I’m writing these posts that those of you reading who are lucky enough to not have suffered mental illness must think these are exaggerated accounts that should be taken with a pinch of salt. I can assure you that not only is that not true, these descriptions only really scratch the surface of the things your brain can make you think and feel when it’s gripped by mental illness. It’s all-consuming and terrifying and what makes it even worse is the fact that this assault is being orchestrated by your own brain and yet you’re completely powerless to stop it. It grips you like a vice, pinning you to the spot and squeezing the life out of you and yet no one around you can see it, they can’t see why you’re struggling for air, or understand why tears are pricking in your eyes, or you’ve come over in a cold sweat. Nothing outwardly in your surroundings has changed and yet for you the fear has enveloped you and it’s all you can perceive. And for days now, weeks in fact, that’s been my near-daily experience.

When I’m feeling so unwell now, it’s hard not to look back, to look at where this began, to think back to when I knew there was a problem and plucked up the courage to ask for help, only to be fobbed off, dismissed and belittled. It breaks my heart to think of the 16-year-old sat shaking in her doctor’s surgery wondering if she’d gone mad and being so scared of what was happening in her head that she risked being forced into hospital which was what she was sure was going to happen. She had unscarred skin, she ate healthily and had good self-esteem, she just felt sad all the time and didn’t know how to cope anymore. I wish someone had realised something was wrong and rather than pretending everything was fine, listened to her, held her hand and helped lead her back to the light. I shouldn’t have needed to self-harm, I shouldn’t have needed to develop an eating disorder and I shouldn’t have needed to plan how and when I might end my life because it should never have got so unbearable that I even considered those things. For all of these reasons and so many more we desperately need to fund children’s mental health services, increase awareness of what to look out for and have quick and efficient assessment and treatment services to rescue those who veer off the path, so that mentally ill children no longer have to become mentally ill adults. I wasn’t destined to be like this, but my fate was sealed when mental health services tried to prove me wrong and talk me out of being mentally ill when I knew I had every reason to feel the ways I was feeling and had no skills to deal with it. Until we overhaul these systems, we’ll continue to have hundreds if not thousands more follow the well-trodden path from mentally ill child to mentally ill adult and what a complete and utter travesty and waste that would be. During this Children’s Mental Health Week I’d ask those of you who have children or who work with them to read about mental illness in children, to look up the signs and symptoms that something is wrong and to find out what to do in those circumstances, so that you’re prepared! Mental illness was much less known about when I became ill and it was barely mentioned in relation to children so no one around me had any idea what to do but things could’ve been so different if they’d known how to help. You can be that change and you could help stop a mentally ill child from becoming a mentally ill adult.

I wrote this post for parents – 10 Ways to Help Your Mentally Ill Child; and this post about my experiences of being excluded from school – Excluded For Being Mentally Ill.

Excluded for Being Mentally Ill

TW: Non-graphic mentions of Self-Harm and Suicidal Ideation.

The end of school isn’t a time I like to think about. I remember the good bits and have spent the last 14 years trying to ignore the rest but as is the way with these things, when you try to bury them, they often resurface when you least expect it. Today, I was reading this post by mental health charity, Mind, about the Hubs they want to have created to give young people a place to go to get quick and easy access to mental health support before they deteriorate on waiting lists. The descriptions they gave of children and how they’re being treated brought everything flooding back to me because despite so much progress apparently being made in society in the last 14 years, how schools, doctors surgeries and mental health services are treating young people hasn’t changed a bit. So I’m going to go back and explain what happened to me because it’s something I’ve never felt able to talk about on here, or really in real life either. I’ve told people bits and pieces or slipped sections into conversation but I’ve never really gone into detail because it was too painful and most of all, I was embarrassed and ashamed, something I should never have felt and something I hope to one day be able to move past.

I became ill with depression just before my 16^th birthday. Things were bad at home, my parents weren’t getting on and I dealt with it very badly. 18 months later they were separated and 18 months after that, divorced. The month before my 16^th birthday I seemed to just lose my ability to cope. Rather than taking things in my stride or believing I could cope and things would get better, I started having darker and more bleak thoughts and felt sad all the time. I spoke to a trusted teacher at school and she said to try and be nice to myself, to relax and to try and have a nice Christmas. I don’t remember much of that Christmas but I know it wasn’t good and things were at a real low in my family. By January I felt worse and wondered if I might have depression. I knew nothing about it but had heard it on TV and given that I felt sad all the time, it seemed like that might be what was wrong so I eventually asked my mum to take me to the doctors. It was a total waste of time. The doctor was really dismissive and said it was the time of year, that it was January Blues and “Every teenager in the country feels like this at the moment”. It’ll pass. I said to her that if that was the case there were going to be a lot of dead teenagers but she sent me home with no diagnosis, no help and no treatment.

By February, I was coping much worse and for the first time in my life I started self-harming. I vividly remember the date and the circumstances that led to that, even 14 years on. I’m absolutely terrified of pain, verging on phobic about it. I avoid pain at all costs, am phobic of needles and completely freak out at the idea that something will hurt. And yet, here I was self-harming. At first it was maybe once or twice a week, it certainly didn’t stay that way. 6 weeks after my first appointment, I asked to go to the doctors again, I was now regularly self-harming and seriously contemplating suicide and wishing I was dead. She immediately referred me to CAMHS (Children and Adolescent Mental Health Services). A few weeks later I was assessed by CAMHS and within 10 minutes I was diagnosed with depression and put on anti-depressants. No therapy, no talking about the root cause, no explanation to me or my next of kin about the effects these meds could have on me whilst taking them or if I stopped suddenly, just a prescription for some pills. Soon after this I started restricting my food intake.

The whole of this chunk of my life is hazy at best. There are milestone moments that I remember but the day-to-day and the exact order everything happened is really hazy because I was so unwell at the time. I became hugely sleep deprived and was sleeping under 4 hours a night. I’ve always had major sleep problems but this was in another league. By February or March I was seeing the school counsellor and while she was lovely, it was fraught with problems. I got kind of obsessed with her and completely reliant on the one adult that was actually listening to me and taking me seriously. She didn’t know me very well and didn’t really seem equipped to deal with someone as severely ill as I was becoming and quite honestly, I think she was out of her depth but she was all I had. She made various promises about what would and wouldn’t be kept between us and so I knew where the boundaries were. Unfortunately, and again, my memory of this event is really not clear, at some point she agreed not to tell my parents something, possibly about the extent of my self-harm, I don’t actually know, but then went back on her word and didn’t tell me so the first I knew of it was my mum appearing in a school corridor after she’d been called in. It turns out, despite being a pretty composed and collected person, I don’t react at all well to being cornered or surprised. I refused to go home and ran off to go and find my trusted teacher who helped calm me down. I don’t remember what happened after that but I never trusted or confided in the counsellor again.

As I deteriorated further, my sleep remained bad, self-harm increased and I was losing weight. My nurse at CAMHS was an eating disorder specialist nurse who seemed like she’d never met a person with an eating disorder in her life. Every week I’d be asked how I was doing, every week I’d tell her I was worse because my life was starting to spiral out of control. I know that must sound like typical teenage angst but it genuinely wasn’t and things were worsening at home and my depression and symptoms surrounding that were worsening too. I was also months away from leaving school and having to go through huge changes which I also don’t cope well with. Every week she’d tell me “Well you’re looking better”. I’d be weighed each week and she’d make unhelpful comments if I’d stayed the same or gained weight which just spurred me on to reduce my calorie intake further. At no point did they give me any techniques to be more resilient or to learn to take things in my stride again and I was mostly just told to hold ice or ping rubber bands so that I stopped self-harming and to focus on the future when I could move out (a likely 3 or 4 years in the future). Suffice to say, none of that helped.

In May, my Grandad was hospitalised and died a few weeks later. My anti-depressants weren’t helping and just made me feel numb and I knew it was bad if people didn’t process death and this was the first death I was exposed to so I came off the meds. My family were furious and my nurse and doctor at CAMHS were equally unimpressed. I was told off which felt really unfair given that I’d done it for the best reasons. Again, I don’t remember the circumstances fully but I had an appointment with CAMHS and my trusted teacher offered to attend with me as it was just round the corner from my school. She came but the appointment went very badly and I ended up in floods of tears with her outside on the pavement refusing to go back to school because I felt so helpless. Unbeknownst to me, this triggered her to need to leave school for the day. That night I slept for 2.5 hours. I woke up at 5.30am and just couldn’t be in the house anymore and decided I was going to go out. I wrote a note to my family explaining that I’d gone out and taken my school stuff and would attend school on time but I just couldn’t be in the house. I walked to the beach and sat there watching the sunrise. My mum kept calling me and I didn’t answer. I didn’t want to talk to her knowing I’d be told off. I knew it was dangerous to go out in the dark at 16 years old but I just couldn’t stay in the house. Eventually something in me told me I had to answer the phone and mum asked where I was. I said I wouldn’t tell her but that I was safe and was going to go to school. She was very insistent that I had to tell her where I was. I eventually did and before I knew it she pulled up in the car and made me get in. It was there that she explained I had been excluded from school. I didn’t believe her and thought she was just trying to scare me or punish me for “running away”. I hadn’t done anything wrong and school couldn’t know yet that I’d run away so I couldn’t possibly be excluded but she explained she’d had a phonecall from the school the previous day and because I’d upset the teacher, they couldn’t have me in school while I was “behaving like this”. My world fell apart. I had exams coming up, my leavers’ service and my school prom and I was told that I could do my exams in isolation and I wouldn’t be allowed to attend anything else, no last lessons, no leavers service, no prom. They weren’t even going to let me say goodbye to my friends. Thankfully, one of my exams was a 5 hour textiles exam which had to be done in school and they eventually agreed that if I “behaved” in that, that they’d consider letting me attend my leavers events. Being someone who was good as gold throughout school and never once got sent out of class or given detention, that wasn’t difficult and after a week of exclusion they agreed to allow me back in class and to my leavers events as long as I “promised to behave”, whatever that meant. I still don’t actually understand what rules I broke or what I was specifically excluded for other than accidentally upsetting a teacher who was probably inadvertently triggered because my experience was a bit too close to home. I attended all of my leavers’ events and lessons without incident.

At college, it had been handed over that I had mental health problems and I had to have a meeting with someone before attending. The ‘rules’ were spelled out about not being allowed to self-harm on the premises and that I’d potentially be expelled if I did. For the avoidance of any doubt, I’ve never self-harmed anywhere other than at home and I’ve never carried dangerous objects or showed anyone my injuries unless made to and my injuries never required medical treatment or intervention of any kind. It was such a humiliating experience. I completely understand that of course it would be completely inappropriate to self-harm on school, college or workplace property which is why I’ve never done it but it’s so embarrassing having that spelled out in detail to you and you being talked to like you’re some kind of deviant or criminal. Self-harm for me was always a coping strategy and a means of survival. It’s why I don’t feel ashamed of my scars and why I no longer deliberately cover them up because I’m sure I’d be dead if I didn’t have them and hadn’t got through in that way. I’m never going to apologise for that because to apologise for self-harming would be to apologise for being alive and doing what it took to survive those times.

I managed to hold it together for a few months at college but I felt like I was falling apart. My eating disorder worsened and I was very close to being diagnosed with Anorexia. I’m not sure if I ever did get an official diagnosis or not but I was told I had Eating Disorder Not Otherwise Specified, Anorexia Type because I was slightly over the weight at which I’d be classed as Anorexic. I was cold all the time, I felt faint a lot and just completely miserable and overwhelmed. I had been put on a different anti-depressant just after my 17^th birthday which made me dangerously suicidal (again with no prior warning of this possibility given to me or my next of kin) and so I took myself off that after 4 weeks. Again, I was told off for this but I absolutely maintain that I’d be dead if I’d remained on it because the suicidal thoughts and feelings were so intense. I was put on a third a couple of months later which made me sick which really didn’t help my eating disorder, I was taken off that one after just a few weeks.

Thankfully, my dad had private medical insurance with his work that covered the whole family and my GP at the time (a different one from the previous year) suggested going private. I spent a couple of months having check-ups whilst I deteriorated and in that May (2018) I said I couldn’t keep myself safe and didn’t want to and that if they left me at home, I wouldn’t be alive to see the next appointment. Within days I was admitted to a private psychiatric hospital for what was initially meant to be 4 weeks and turned into 9 weeks and I was only discharged then because the private medical insurance funding ran out. My parents separated while I was in hospital and I was discharged to my new house having visited it once. I stayed in outpatient therapy for months after that.

My physical health deteriorated, probably because of the sheer strain of the mental illness I’d been suffering from relentlessly for 18+ months and my attendance at college dropped hugely as I became functionally nocturnal because my insomnia got so bad. College threatened to take me off my courses when my attendance dropped below 50% despite it being entirely because of illness. I fought and fought to be kept on so that I didn’t have to do another year and finally managed to get them to agree but it was very begrudging on their part. Yet again, I was treated like I was skiving and not bothering to turn up, rather than so ill and so sleep-deprived that I was asleep at home during lesson times because it was the only time my brain would shut off enough. I eventually managed to drag myself through my A Levels and after some retakes I managed to get the grades I needed to go to University the following year.

Throughout these experiences it didn’t feel like I was treated fairly. I wasn’t naughty or disobedient, I wasn’t acting up or misbehaving. I was ill. I had a challenging homelife, I’d been physically ill from the age of 9 with ME/CFS which led to lots of disruption and an abnormal childhood and I’d been bullied a lot and after it all caught up with me, I was then treated like I was bad. I understand that it must be really hard for schools to know how to handle children like me, they’re experts in teaching but they’re rarely trained in mental health but what worries me most is that in 14 years it seems that almost nothing has changed and so many mentally ill children are still being treated like they’re naughty and punished and penalised for symptoms and behaviours that they simply aren’t in control of or to blame for. It has to change. We have to believe children, to take them seriously and intervene quickly and robustly. We need to give them understanding, teach them coping techniques and not punish them for symptoms of mental illness that they can’t help. I was a model student with an exemplary record throughout my time at school and it’s beyond embarrassing to remember that I was excluded because I was so ill. We must do better.

Mental Health Awareness Week – Awareness is No Longer Enough

It’s Mental Health Awareness Week again and this year the tone appears to be changing. Not the tone of the government or most of the charities, but from campaigners and sufferers of mental illness there’s a distinct change occurring, a tiredness, a frustration and a building anger. This year’s theme is Nature which seems innocuous enough but honestly, who is it helping? For years, we’ve known that nature and being in green spaces helps improve mood etc etc. And yet, we are increasingly building on green spaces, packing people in like sardines so they’ve got no views, no parks, no wildlife around them and then during awareness weeks we tell them to go and seek out the nature that’s been so cruelly stripped away from their neighbourhood. How? Where? With what funds?

One of the biggest problems I have with this week is that it’s not designated to a proper cause. It’s called Mental Health Awareness Week but mostly it’s Mental Illness Awareness Week. Really, there need to be two. But much more than that, people need educating on the difference. We all have mental health, like we all have physical health, we all need to take care of our mental health just like we need to look after our bodies but mental illness is illness like any other. It’s when something’s gone wrong, off kilter, and we need access to diagnosis, treatment and support in order to regain wellness again. Nature is not a substitute for support, nor is it a treatment for mental illness. It’s a good tool to help keep mentally healthy and performing at your best but if you’re mentally ill, a walk or a roll around in some grass isn’t going to cut it where medication or therapy are needed.

Nature isn’t accessible to everyone. For so many reasons and in so many ways. Not just because it can be difficult to find when you live in particularly urban areas but also for those with limited time or resources and most notably for me, because I’m agoraphobic. My condition means that I don’t cope well with being outside so nature is pretty inaccessible to me. Lack of access to nature isn’t what’s keeping me ill, it’s not the cure for my conditions and yet all I’m really seeing on social media and the news this week is about how nature can help alleviate symptoms and while this is true in mild cases, it’s really not effective for those of us with severe symptoms. Most days I’m not well enough to even go out of my front door, let alone go into nature for a walk or a picnic. I live in a flat so I don’t have a garden I can go to. I’m very lucky to have a lovely view and can see a local park and the South Downs in the distance, I see squirrels and seagulls and foxes and people walking their dogs but it’s all through panes of glass. I’ve tried to follow tips and bring the outside inside and have an orchid and I’m growing some tomato and chilli plants. Surprisingly enough, despite all of this, my anxiety isn’t better and my agoraphobia still isn’t cured.

What I need is therapy. I don’t need awareness so much as I need access to support. I need to stop being threatened with discharge from my mental health team. I need support and treatment to exist in accessible ways that don’t require me to leave my home, the thing I need therapy in order to do! I need options that aren’t just CBT which I’ve exhausted over the years and which doesn’t work for people like me. I need waiting lists to be shorter. I need to not be waiting 3 years or more for an assessment that may still not lead to any new treatment options. I need doctors, MPs, and society as a whole to fight for funding so that instead of churning out the same “It’s OK Not To Be OK” and “Be Kind”, and “Reach Out For Help If You’re Struggling” slogans year on year, change actually occurs and people like me can finally access treatment and support without having to wait until these conditions possibly kill us. Fighting my own mental illness is hideously hard but fighting society at large as well is impossible. I’ve been blogging for 6.5 years and nothing has changed. Services in my area have been cut, doctors are retiring or leaving, appointments get shorter and spaced further apart and the threat of discharge gets bandied about more regularly. I’m still just as ill as when I first went to the doctors. I’ve still not received any therapy on the NHS. I can’t be medicated because all of the medications made me worse. I’ve just been left. The support I’m offered is an up to 30 minute call once every 6 months with my psychiatrist. He doesn’t know my Grandad who I was a carer for for 4 years has died, he doesn’t know that I’ve had physical health problems that have majorly affected my sleep for almost 3 months, he doesn’t know I’ve suffered from intermittent suicidal ideation, or that the waiting list for the assessment he’s sent me for has been extended by another year. Why? Because my next appointment isn’t until June and I last spoke to him before Christmas.

Nature’s great but it’s not a substitute for treatment. Awareness Weeks have had their day. What we really and truly need is Action Weeks. And then actual action. I no longer care about whether people accept that I have an anxiety disorder or realise that it’s not my fault or that I shouldn’t be ashamed of it. I know that awareness has its place for all of the people who are coming up behind me who are starting to suffer symptoms that they don’t understand or who are having experiences they’ve never had before. I know we need to make people aware but the whole point of awareness always used to be so that you sought help early enough because it’s been well-documented for a long time that the earlier you intervene in mental illness, the better the outcome and the less intervention is usually needed. But support is so sparse now that awareness is almost useless. It’s all well and good suspecting you have a mental illness and going to speak to your GP about it but then what? Almost all of the doors that used to open are firmly nailed shut thanks to funding cuts. We keep hearing about a pandemic of mental illness, but there’s no vaccine coming for this and social distancing will surely worsen the effects. Knowing what’s wrong with you is the first step but without a second you’re still stranded. Alone. Frightened. Unable to get better. And sorry to be a cynic, but walks or visiting gardens is going to be of little use to people suffering from psychosis or eating disorders or just about any mental illness that’s actually at a diagnosable level of severity.

I’ve been in two minds about whether to even post about this because I really don’t like posting negative or angry things, especially about public events or things that are aiming to help but this is falling so short. It’s like the Clap for Carers. It’s all well and good clapping but it’s not paying people’s bills, it’s not actually making a meaningful difference and it changes nothing in the grand scheme of things. Awareness weeks have had their day and could still be useful now if they were followed up with action but all the time we’re focusing on airy-fairy topics like nature and deeming that to improve everyone’s mental illnesses, we’re falling dangerously short and without radical change this pandemic is going to last a lot longer than the Covid-19 one will. We don’t need Awareness Weeks. We need action!

Why it’s Not OK Not to be OK – World Mental Health Day 2020

It’s World Mental Health Day and again, I’m not sure what to say or where to start. Often I let it pass without words because nothing I can think of to say feels like enough to warrant even starting. But I don’t want to be silent on a topic that’s so important to me, on a day when the world talks loudly and tells us what we all should and shouldn’t be doing regarding mental health and mental illness.

The problem is that most people like me who are mentally ill and who’ve been trying to fight stigma for more years than we care to remember are tired. Really tired. We’re tired of the narrative surrounding this day and mental illness generally. We’re constantly told to be kind and it’s ok not to be ok but quite honestly, the latter makes me want to vomit. Because honestly? It’s not ok not to be ok. I deserve more than that. I get that the phrase is saying that we shouldn’t feel ashamed, we shouldn’t be stigmatised, we should feel like it’s alright to talk about our bad days but despite the progress that’s been made, there is still such a long way to go. And quite frankly, I don’t want it to just be accepted that I don’t feel ok. I want people to be angry that I’m left to feel this way, to suffer, often needlessly. I want people to fight for funding, for treatment, for services to be opened and started up rather than defunded and closed. I want people to be outraged that our waiting lists for help are months, if not years long. If that was any other patients there’d be protests or riots, if it was others being told to just wait on the medication or therapy that would keep them alive, people would be up in arms but because mental illness is still stigmatised and dismissed, it’s viewed as lesser, less important, less life-threatening, less dangerous and far more self-inflicted and able to be controlled by the sufferer than physical conditions. It’s not until people spend extended periods of time with someone who’s very unwell and able to articulate their experience that people start to understand what it’s actually like and what we actually go through.

World Mental Health Day just seems to have turned into companies, governments and people in society loudly shouting that people like me should talk, we should reach out, we should get help and in some ways that’s true but if you actually look at the reality of those suggestions, you’ll realise why we’re so tired and feel so helpless. We can’t get help when we ask for it. We’re turned away because we’re not ill enough or too ill, because we have complex diagnoses or damaging symptoms that services aren’t equipped to deal with. So few people can meet those super specific criteria and more and more of us are falling through the cracks. I’m currently on a waiting list that could take 2 years to reach the top of just to get assessed for a diagnosis that is unlikely to get me any treatment. I’ve agreed to be assessed because it’s literally the only thing I’m now being offered and it could help explain why previous treatment options have worked so poorly for me. But then what? I’ve not really been told what will happen if I get diagnosed, or if it’s discovered I don’t have this condition. What’s very likely to happen in the meantime is that the Adult Mental Health Team will discharge me because they’re not “treating” me currently and they can’t offer anything else that’s suitable for me. I’m much too ill to engage in any of the “treatments” they offer and so I’m likely to get discharged. In what universe is that acceptable? In what other branch of medicine would someone so commonly and easily be deemed too ill to be treated and discharged to deal with it alone, with no support and not even someone to talk to about it?

We have come a long way, even just in my lifetime and in so many ways that’s fantastic but when I look at the issues we still face, the stigma we still encounter and the appalling lack of access to suitable treatment and support, it’s clear that we have far further to go than the government and wider society would like you to believe. There are so many “inspirational” stories, posts and quotes going around, as there are every year but they simplify the mental illness experience to a ridiculous degree. I’m a walking contradiction and I reckon most people with mental illnesses are. I’m incapable but I’m also capable, I need help but I’m independent, I can’t look after myself but I can look after others, I’m incredibly anxious but I’m a brilliant problem-solver, there are so many things that I can’t do but there are so many things that I can and I don’t need to be written off just because I’m ill. I do, however, need help and treatment and “talking about it” isn’t going to cut it, I need actual support and therapy but these aren’t being offered. I’ve seen lots of posts today about these issues from mentally ill people so I definitely think the message is getting out but I’ve also seen so many posts suggesting that we just need to reach out and talk to someone and actually, when you’re very ill, that’s nigh on impossible to do, especially when professional help isn’t available. Rather than the onus being on us, if you’re able to then please check in with anyone you’re worried about, anyone you know is ill or struggling or who you’ve not heard from in a while because they might not feel able or even worthy enough to reach out and you’ll never know the good you could be doing by reaching in. Being mentally ill is a very lonely experience and it can become all the more isolating by people who don’t understand the suffering telling us to “just” reach out, talk about it or seek help when those things are often impossible to do. Be our ally, be our friend and help fight our corner because without funding and an increase in services we’re heading for a pandemic of mental illness and you could be one of the ones realising that not being ok is far from ok.

Letter to Myself 10 Years Ago – Age 27 and a Half

Today I was reminded about a post suggestion I followed a couple of years ago to write 50 words to yourself 10 years ago. 50 words is nothing like enough now but I wondered how different that might look, 2 years on. I realised that 10 years ago I was in the midst of severe depression and very very ill so here’s my letter to Lucy of 10 years ago.

Dear Lucy,

You’re 17 and a half. For some reason the halves and quarters have always mattered to you. In fact, you recently described yourself as 27 and a half so it’s not something you’ll grow out of. You’re currently in hospital. You asked to go. You didn’t feel able to keep yourself safe anymore. You’re not sure at the moment if it was the right thing for you to do but I can tell you from the future that it’s one of the best decisions you ever made. You’ll meet some of the best, kindest, most normal people there. You’re still friends with some of them now. You’ll decide on a new career direction while you’re there, you’ll have a poignant conversation with some other patients and realise that your passion lies in helping people and the fire will be ignited in you that, 10 years on, is burning stronger and brighter than ever to make a difference to the lives of people with mental illness. I probably should have started this with a spoiler alert, I guess I’m wrecking all of the surprises. Sorry!

You’re struggling so much right now. You’re in so much pain. It does get better, I promise. But I know that right now it just feels like the worst thing ever and you’re wishing with everything in you that it would all just go away. You feel so alone, so misunderstood, so attacked and hurt by people around you. Some of that gets easier. You’re not alone in the future and you aren’t alone now. Let people in. Try to spend less time worrying about what other people think, I know it matters so much to you but it’s eating you up inside. Later this month you’ll be asked to create a “positive box” by the hospital, you’ll think it’s silly and you’ll only be able to write two positive things about yourself when you start but just watch what happens next, watch all of the patients and staff around you take time to write you messages, make you things, draw you pictures and give you gifts to put in your box so that it’s so full it almost won’t close. It’ll bring you so much comfort over the coming decade and it’s still kept safe now and is a treasured possession.

Listen to the staff. They care about you, even though you sometimes don’t realise it. They’re trying to help you. Eat the food. You’ve had an eating disorder for too long. You’re restricting yourself so much as punishment because you feel you don’t deserve nice things. It’s not true, you do! You’re so kind and caring, you put everyone else first, always, please stop punishing yourself with restricting food and self-harming. Spoiler alert again, this will get better, I can’t say if it’s permanent or not but right now, you’re a healthy weight, you no longer have a distorted body image and you haven’t self-harmed in years. The scars you’re so ashamed of currently are no longer something you feel embarrassed about or have to cover up. You’re happy to wear t-shirts and short-sleeved stuff and despite the scars on your leg that you’ll create when you’re 22, you still wear a bikini and finally realise how fabulous you look in it!

In 6 months you’ll start embarking on romantic relationships. It’s safe to say that these are not successful and some are still a source of embarrassment and shame. I won’t tell you what to do or not do, you wouldn’t listen. You need to go through all of that to realise what you want in life, to realise how you shouldn’t be treated and to eventually realise what you’re worth. Try to make sensible choices and stay true to yourself. Try not to regret anything. Take it from me, your “accidental anal” story will become legendary and the chlamydia test debacle will put more than a few of your friends at ease that their experience can’t possibly be more embarrassing than your own. All of these things make you an even better friend and when you get to my age I think you’ll be really proud of the friend you’ve been and still are.

I know you’re really struggling to stay alive right now. Even 10 years on I can still feel that ache in your chest, that desperation to find any small reason to stay alive, to not spend all of your time planning a way out that won’t involve causing yourself pain or hurt those around you. I know you think you want to die right now but years later you’ll realise that’s not true. You don’t want to die. You want to stop hurting. I don’t know how it happens, I can’t even pinpoint when, but gradually that pain does lessen. Gradually, you stop wishing for death. Get through each moment, each day, I promise you it will get better and you’ll never believe how good it is to not feel that weight on you all day every day.

You’re currently being told by a lot of people that you’re selfish. Deep down you know that’s not true but it’ll take a long while for that to sink in. Tell yourself every day that you’re not. It might just save you some heartache and might keep you more confident. You will realise eventually that you’re not selfish and you’re not self-absorbed either. The people telling you that are angry and they don’t understand your illnesses and so they’re lashing out in the hope that they can snap you out of it. You know it won’t work, eventually they realise that too, but right now it’s going to hurt like hell and you’ll spend way too many hours crying til you can’t see anymore and wishing even harder to disappear from the world. You won’t always feel that way and even though life at 27 and a half is a challenge that I wouldn’t even consider telling you about now, you’ll be helping people, you’ll be making a difference and no one will have called you selfish for a really long time.

You’re hearing voices and that’s ok. It’s terrifying and it’s something that you tell almost no one about because you’re convinced that you’re schizophrenic and you’ll get sectioned but it will be ok. You won’t get sectioned. You don’t have schizophrenia. And although you do get some worried reactions from people, no one leaves you because of it. You’re going to start hallucinating soon. You may have already started. It makes you feel like you’re going mad, like your mind is out to get you. It gets easier. You get used to it and it does stop, at least for the most part. Again, I don’t know when the voices stop, not for a while now but eventually they will and they certainly quieten and lessen over time. You’ll learn to over-power them, to drown them out or tell them they’re wrong. You’ll stop seeing hideous versions of your own suicide. The only hallucinations you’re left with in a decade are of bugs and those are only occasional and when you’re particularly tired. Quick tip – when that happens, go to bed, it’s a sign you’ve been up for way too long! You won’t be scared of it anymore and it isn’t anything sinister no matter how much it feels like it must be right now. You won’t believe this but it’ll actually help you with your future work, all of these experiences will help you be an awesome nursing assistant and they’ll help you to relate to patients and be understanding and empathetic. When you’re working in the future you’ll actually consider being grateful for these experiences because by then you’ll have learnt so much from them. I know that sounds crazy right now but trust me, you’ll get here.

I’m so sorry you’re going through this right now. I wish I could make it better, take the pain away, give you the map of how to navigate your way through it. The truth is that I have no idea how we get from you to me. If I could do anything to make this easier, I would. You’re feeling so alone, so hurt and so suicidal right now and you’re going through one of the toughest periods of life that we ever do but you will get through it, you’ll make amazing friends, you’ll choose a fascinating, worthwhile career path, you’ll do a degree that will make you meet even more fantastic friends and even the man you hope to marry one day. There will be some dreadful periods, times when you can’t see the light, when you won’t even want to try and look for it. But you’ll keep fighting, you’ll keep driving yourself forwards because that’s what you’re doing right now and by 10 years later you’ve got even better at picking yourself up, dusting yourself off and striving forwards to get what you want.

Take care of yourself, be proud of yourself and try not to fear the future, it’s terrifying, even worse than you’re imagining, but it’s amazing too and you’ll get here.

Love you,

Lucy (age 27 and a half) xxx

Two Years On – Two Years of Trying

You all know by now that I’m one for anniversaries. It’s not deliberate, I just have a really good memory for dates, plus this one is etched onto my brain because I’ve had to fill out so many forms declaring how long I’ve been ill and off work for that I’m not sure this date will ever leave my head. March the 24^th 2014, the day I stopped coping with life. Dramatic isn’t it?! But that’s pretty much what it is. I don’t want to focus on that today though. My way of dealing with things, my way of looking at this condition, at my life, at the challenges and adversity I face each day has really changed, I can’t pinpoint when, why, or even particularly how, but it has changed and I’m going to take this post in a different direction from the one I’d have expected last year. I re-read my post One Year On – One Year of Fear, a few days ago and it was fairly depressing. Not what I wrote, though it certainly wasn’t cheery content, but it was depressing to read how I was then and what I hoped would be the case for today, one more year on. It was disheartening to realise that I’m actually worse than I was then in many ways. I can do even less, I go out even less, my social circle is even less. I thought I’d have improved by now, I thought I’d be getting my life back on track and for a while I did make some small improvements, I was able to go out a lot more regularly, I was pushing myself so hard to do more and more things that scared me, it wasn’t difficult to find things, almost everything scares me. Then I deteriorated in October after being put under too much pressure and my condition decided to fight back hard and I was the most housebound I’ve been, completely unable to take the rubbish downstairs, fearing anyone buzzing our door, having panic attacks before phonecalls and only being able to visit my grandparents once a fortnight (a place I’ve known my whole life with people who were at my birth) and suffering severe anxiety ahead of time. I was utterly trapped, not only physically by my condition and within the walls of my flat, but now almost entirely mentally too because for months I’ve had nightmares that include anxiety, I worry about anything and everything and even get anxiety for no reason where I’ll just feel anxious and have anxious thoughts about nothing.

Despite all of that though, despite all of the trapped-ness, the pain, the worry, the wondering, I’ve been doing something that has challenged me, that has forced me to face my anxiety head on and that has scared, overwhelmed and taken over my life more than I thought it ever would. Blogging was never something I wanted to do, I never thought I had something to offer or even write about, for those of you that don’t know, the only reason I started was to satisfy some particularly persistent and vocal (in a good way) relatives and friends who weren’t taking no, or my lack of assurance in the idea as an answer. So I eventually gave in. I will never be able to thank them enough for pushing me in this direction. The course of my illness, the course of my recovery has changed all because of them believing in me and believing I had something to say. Blogging has been an absolute lifeline for me. I have very little going on in my life in the real world, I don’t have an awful lot to look forward to, my progress in terms of recovery is almost non-existent, but online all of these possibilities have opened up. I can help make a difference, I can have a voice, I have a cause, I can do what I was put on this earth to do and help people, all with the aid of my laptop and an internet connection. It’s given me a purpose, a reason to get up in the morning and probably best of all after the opportunity to help people, it’s given me more friends. I’ve met so many amazing people who follow my blog, who share their colouring with me, share their stories with me, who comment on posts when I’m feeling rough or post pictures to cheer me up, I have a whole community of people who want to help each other and it’s wonderful to be part of that. I’ve also made 3 amazing friends who I hope to be able to call friends for life now. Two of them are reviewers and though we’ve never met, we have so much in common and their support, conversation, humour and friendship have been absolute lifesavers through the countless times I’ve considered giving up blogging and throwing the towel in. They’re probably sick of me thanking them and it’s probably lost all meaning but I truly can’t thank them enough for everything they’ve done for me, they won’t even realise the extent they’ve helped but my family and friends do and we all thank you. I’ve also made friends with a fellow colourer who sends me a photo almost every day, we’ve never met but when I’m better we’re going to colour together, go button shopping and eat ice cream. Those sound like simple things but to me those things are the world because they’re currently so far out of my reach. Blogging has helped me connect with people who understand, who help pull me through and who give me things to look forward to in the future.

Two years on, two years of being predominantly indoors and I’m pretty used to it. It doesn’t upset me every day, I don’t pine for the life I had so much anymore because it now feels so far away, so distant, that I no longer remember what it felt like. I’m so used to being housebound, to being anxious and scared that I can no longer imagine living a ‘normal’ life because I have no idea how I did that in the first place. Despite living through it, I don’t know how I got from that functioning girl who was going to change the world, who grinned from ear to ear walking across the stage at her graduation, who worked in a high-stress job that most people wouldn’t even attempt doing, to this. This anxious creature whose first thought is to worry and wonder ‘what if?’, who fears almost everything and who can only just cope with everyday tasks and still can’t manage basic things like planning meals or working to a schedule.

Despite all of those things, all of those difficulties (most of which I’ve never even mentioned because I’m too embarrassed to admit them), I try to push through, to keep myself motivated, working towards something and being useful in some way. In the last year I’ve learnt so many things, talked to so many lovely people and realised just how widespread mental illness is. Despite having very little self-belief, I’m gradually starting to realise that I do have the ability to write and that this is something I can offer whilst I can do little else of use indoors. I’m starting to feel like I’m not wasting my time and I’m incredibly determined to have something to show for myself at the end of this period of extremely limited functioning, however long it may be. I will not become another unemployed statistic who can’t get a job because they were too ill to work for a time, I will not fit the hugely stigmatising stereotype people have of the mentally ill that we’re lazy and work-shy and don’t try hard enough to ‘snap ourselves out of it’, I try all day, every day and some days the amount of effort and determination it takes me to go for a walk or visit my family on rare occasions is the same amount of effort I have to muster to get myself out of bed and not just cry or contemplate suicide. None of this is easy. It doesn’t get easier over time. In some ways I’m used to this, I’ve adapted to it, but it’s still painful every day. Every day I have to fight with my own mind to not label myself as a failure, to not give up even though I’m running out of answers to the incessant question in my head “What’s the point?”. I make myself have a goal, I try to help people in whatever way I can and every time I get an email or a comment from someone saying they enjoyed my review, or the book they bought on my recommendation is their new favourite, I feel that little bit more hopeful and it becomes a little easier to get out of bed that day, to keep going, to keep doing, to keep living this groundhog day of repetitive worry and anxiety and lack of progress because if nothing else, at least I’ve made a difference in someone else’s life.

I’m not going to put myself through thinking about the year ahead, it’s too difficult to focus on the all-too-real prospect that I may get to year 3 and still be blogging about lack of progress. I’m also learning from my mistakes and I’m not going to put down hopes either, even small ones like I thought I’d done last year because even those I haven’t actually managed to achieve and that just sets me up for failure. I’ll leave you with my plan instead because I only make plans that I think I can realistically achieve. I plan to continue blogging, to continue trying to learn new skills so that I have a whole new section to add to my CV when I can eventually, hopefully, start applying for jobs again. My biggest plan is to continue trying to help people, to reach out to other people like me, who are struggling with their lot in life, and often with their very existence, and let them know that they’re not alone, that there are countless other people out there who are struggling too and that together we can help each other through until the days are a little brighter. I don’t know what the year ahead will involve, or what it will bring, the idea of another year, even another day of feeling like this scares me to the pit of my stomach, but one thing I can assure you of is that I will be trying. Trying all day, every day, striving forwards, pushing to succeed and taking each day, hour and even minute as it comes in order to get through to the next one in the best shape I can. Two Years On – Two Years of Trying.

If you’d like to keep up with my blog posts then click follow at the top or bottom of the page to receive an email each time I post. You can also follow this blog on Facebook here, or my Colouring blog on Facebook here. If you’d like to read more about how I got into blogging, what I’ve learned and how it’s helped me, you can read my post here. If you’d like to read more about my experience with mental health problems and my thoughts and feelings on the matter, all of my posts are arranged into date order here.

Relieved …. I Think!

Today I’m relieved … I think. To be honest, I’m actually numb, but I should be relieved and I think I will be when everything sinks in. I’m truly exhausted after under 6 hours’ sleep a night for the last week due to anxiety about today and only getting 3.5 hours last night and then being done in with drilling and hammering in our stairwell almost all day. To my friends and family who I haven’t told/reminded that I had a psychiatrist appointment today, I’m sorry, I only reminded my boyfriend, it’s nothing personal, I also didn’t phone any of you and I’m sorry about that too, I’m just burnt out and couldn’t deal with phoning anyone or answering questions, or anything really.

I didn’t attend my appointment today. I’ve been asking them since July to stop making me attend appointments that have been making me so unwell, I’ve written letters, had my Support Worker tell them, told them in appointments and until now, they’ve not got the message and keep telling me I have to attend one more to discuss it. I’m not allowed phone appointments, they don’t offer the treatment I’ve been requesting (previous posts explain this in detail but long story short I was lied to about it being offered, then categorically told it wasn’t, and then finally found out it is offered but not in our area and I can’t travel so it’s not currently suitable) which ironically I’m now way too ill to even contemplate, and the only treatment option they offered was going to groups, not group therapy, just groups of other mentally ill people talking about coping strategies we each have and doing arts and crafts – clearly ideal for a virtually housebound agoraphobic who suffers from panic, severe social anxiety and Generalised Anxiety Disorder. I digress…. essentially they’ve continually offered the same unsuitable treatment for 18 months that I cannot attend, I’ve been practically pleading with them to stop making me go to appointments and threatening me with discharge if I can’t attend 3 (I’ve now missed 4 and postponed 3 – I’ve always given as much notice as I can, I’ve never just not turned up) back to a GP who told me to “try harder” on the meds she incorrectly put me on.

Today was a meeting between my psychiatrist, my Support Worker and the therapist I’m yet to be assessed by because I was too ill to attend the appointment in December or January. I was invited too but since deteriorating in October, after the last appointment with them, I’ve only been able to go out on a handful of occasions to places that I’m very familiar with so there was no way I could attend. I was fully expecting to be discharged today after being told so many times that I would be but I finally got some good news. They’re actually doing what I’ve asked and allowing me to be in charge of the care I receive and they’re going to leave me alone until I’m well enough to engage with the services they can offer. I’m still waiting for confirmation of this by letter so I’m not getting my hopes up too high until I have it in writing and have all of the ins and outs explained but it looks like I’m going to still be part of their patient list and everything they’ve offered is on the table for me to reinitiate when I’m well enough and I can contact them to do this when I’m ready. This will hopefully mean no more dates, no more appointments, no more pressure or stress from them to be well enough to attend and then not believed about how ill I am, and I can finally get back to focusing on what I’ve been meant to be focusing on – getting better.

Dates are horrid for me (more on this later in the week) because I can’t forget them because I have such a good memory so even when appointment dates are two months in advance like this one was, I still worry about it and obsess over it for that whole period of time. I’m also asked each time how I’m doing since last time and have to try and keep a mental diary of what I can and can’t do, in comparison to various different dates and periods of time to be able to relay back at any given moment. This is soul-destroying for someone who’s so achievement focused. I try so hard every day to do something useful, to achieve something, to improve, to get better, and the constant reminder that I’m essentially failing has been one of the things that I feel has kept me worse and definitely the thing that triggered my deterioration almost 6 months ago. I’m not getting my hopes up that this decision will suddenly cause some miraculous spontaneous recovery, but I am hopeful that without time pressures from doctors who barely know me, and left to finally listen to my own body and mind and do what I think is right instead of constantly being told that’s wrong, will at least give me the best chance of getting better.

I can’t think of anything else to say, I hope I’ve explained everything clearly and updated all those of you who wanted to know what’s going on and especially those of you who I should have phoned – sorry for the lack of contact. I’m spending the rest of my evening colouring, watching easy tv and hoping to maybe actually sleep through the night tonight, I’m exhausted and desperately need some sleep soon because I’ve been a shaking, nervous-wreck this past week. I’m not relieved yet, but I will be, I hope!

50 Words to My 15-Year-Old Self

A while ago, I read something online that asked what 50 words would you say to your 10 year younger self. I thought about this and thought about what age I was then, and what was going on in my life at the time. This coming December will be 10 years since I got depression – a whole decade, that’s a long time. In some ways it feels like a whole lifetime but I can still remember, as if it were yesterday, the days leading up to it where I felt happy and like I was managing, the events that triggered it to develop pretty much over night, and the all-consuming feeling that I woke up with the next day, and for countless days afterwards, that I could no longer cope. It was like the life and joy had just been sucked out of me and I was left, gasping for air, clutching at hope and feeling the most intensely bad things I’ve ever felt. I didn’t feel able to cope, I no longer wanted to live, I could see no other way out and I was scared of myself, of all of the horrible things I was thinking and of all of the bad things I felt I was capable of, not least of which was ending my own life. So, 10 years on, with more diagnoses than I care to remember and having gone through more suffering than I like to admit, this is what I’d say to the 15 year-old me. This is not what I’d say to a person with depression, or any other mental illness, it’s not what I would want someone to say to me now but, with the benefit of hindsight and with 10 years of experience under my belt, it’s what I would say to myself aged just 15 – sad, scared and suicidal.

You will be OK. You will suffer and it will feel unbearable. But you will bear it and you will come out stronger. You will fight harder than you realise is possible. But you are strong, you are a fighter and you will survive! Keep fighting. Keep going. Keep strong!

What would you say to yourself 10 years ago? What would you have needed to hear? I doubt that it would’ve have helped me 10 years ago to hear this, I doubt I’d have listened or believed it because the feelings were so all-consuming at the time but it’s what I feel like I needed to know, even if it would have just given me a glimmer of hope, that I was in such desperate need of at the time. I now try to tell myself these words every day. I don’t believe a word of it, but I know others do, and I know it’s what I need to hear and hold on to. I’ve got through nearly 10 years of depression, I can get through another few years of anxiety disorders too, I just have to keep fighting, keep going and keep strong!

The Truth, the Whole Truth and Nothing But the Truth

This is an update on where I’m at, where I’ve been and where I hope I’m headed and an apology for the lack of mental health posts. Firstly, I’m sorry for the lack of posts about mental health. It’s not deliberate and it’s not what I’ve wanted but I’ve just not had anything to say on the topic. When you eat, sleep and breathe a subject, as well as suffering from it, you become pretty overwhelmed and saturated by it and while I’m hugely passionate about it still and am desperate to do anything in my power to reduce stigma and increase understanding, I’m having to learn to not do that at the cost of my own health and to stop before I burn out. I keep thinking up posts to write and getting half way through writing them and then struggling to find the words or be able to focus long enough to make it coherent enough for someone else to read. I’m also struggling because much as I’m a very open person and I pride myself on being honest, that’s not always total. I will never lie, I will never make anything up but sometimes I go quiet so that I don’t have to tell the whole truth. I find it very hard to let people in to the very depths of my thoughts and feelings and most of the time I don’t even let myself go there for fear of getting stuck or lost and not finding a way of returning and regaining control. But this means that I feel I’ve lost my way a bit with my blog. I set it up to tell you all the truth about mental illness. And not just the truth I wanted you to hear or the bits I wanted to vent about or challenge or address. My aim was to tell the whole truth. To tell you all the good bits, the bad bits, the achievements and the deteriorations, the ugly days, the real, hard, gritty bits that almost no one ever tells anyone because it’s just too embarrassing or difficult or upsetting. My aim was always to blog about those things so that you could see inside my world, see that depression isn’t always controllable and also isn’t always crying in bed all day; to see that anxiety controls every fibre of your being but that some days you manage to tame it and overcome it and do something you never thought possible and then the next day return to not functioning again.

I haven’t felt able to be totally honest recently because to me, I’ve failed. I deteriorated a couple of months ago thanks, largely, to the extreme pressure I’ve been put under by my psychiatrist to attend treatment that I cannot possibly attend. I’ve been hoping and pushing and trying to work towards it, all the while fighting and ignoring the anxiety that has now taken over completely that was telling me it was too threatening to do. Consequently, most of the progress I had made over the previous months has been lost. It’s not lost forever, I know that, but at the moment it’s out of my reach and back to being incomprehensible and inconceivable again. This has been utterly soul-destroying for me. I’m a very vocal person and I’ve talked to the people around me and my blog readers about every step of this journey through the world of anxiety and mental health treatment but the last few months I’ve got quieter and quieter about it because I simply don’t know what to say. So I’m here, being as open and honest as I can cope with to try and restore order and balance and to get back to doing what I feel I should be doing and want to be doing on my blog. I’ve written about what my conditions are like to live with, I’ve described my diagnoses, disappointment after disappointment with treatment (or lack thereof) and have previously been very honest about my levels of functioning. I kept pretty quiet about most of my achievements and I hope you’ll all forgive this. I wasn’t trying to pretend I was worse than I was, I’ve never ever lied, I simply didn’t want people using the dreaded “I” word (improvement) prematurely, and then being ‘disappointed’ if I was no longer able to do those things. I have achieved things over the past year and was going outside more often, though without any regularity, and was struggling a little less with it. I was managing to do more things on medication and pushed myself really hard to do a few things that I was desperate to do but none of these things were able to be repeated again. Each time I do something and then can’t again it feels a little bit like I’ve failed. I’m my own worst critic, I know, but I try not to get others’ hopes up prematurely because when I’ve done that in the past I’ve been berated for not trying hard enough or choosing to stay ill if I then can’t do those things again. I now describe good things as achievements rather than improvements because doing something on one day doesn’t mean I can do it again, as I keep realising throughout this period of illness. I was managing to go out more often and more easily and I was definitely making progress and heading in the right direction and now, since October, I’ve deteriorated in my ability to go outside and have only left my flat once alone in over 2 months.

So why haven’t I told you this on the blog? Why hasn’t there been a post about my deterioration, my frustration, my lack of functioning? Here I go with the honesty again – because I’m embarrassed. I didn’t want to have to face the fact that I’d deteriorated, I kept ignoring it and hoping I’d be able to go out alone tomorrow, but tomorrow hasn’t come. I kept thinking that if I just tried harder, it would happen. Ridiculous I know! I, of all people, should know by now that trying hard is not the route out of mental illness, that you can’t just will it away or hope your way out of it and yet that’s what I’ve been trying, very unsuccessfully, to do for the last 2 months. I didn’t want people to be disappointed in me for letting my functioning slide, even though it’s not in my control and hasn’t been a choice and that it slipped overnight thanks to the appointment where I was put under so much pressure. I thought people would be annoyed, or judgemental or unsympathetic because that’s the experience I’ve had in the past when I’ve been in similar circumstances and so I’ve kept quiet and not really told anyone. I’ve tried to deal with it alone and not mention how much I’m struggling and how I feel unable to do almost anything on my own. I’m still fighting, I still keep pushing through and try to ignore how insecure I feel and how incompetent I believe I am at even the simplest of tasks but it’s all there if you just scratch beneath the surface. Yesterday, for example, I made biscuits with my boyfriend and even that was difficult for me. They only contain 5 ingredients and are beyond basic to make but I still had to check every step with him, double check the measurements every time and get his advice on when they looked ready to come out of the oven. I can’t bake on my own because I get so anxious and any little problems turn into catastrophic failures in my head so I have to be babysat for tasks like this. It’s so embarrassing to me – I have a degree, I lived away from home and looked after myself for 3 years and now I’m totally reliant on the people around me to help me with basic tasks because they’re so overwhelming. In terms of going out, there’s very little to speak of. I’m still pushing myself to go to my grandparents’ and my dad’s whenever I can but these visits are more anxiety-provoking again which is so upsetting because I’d really combatted that since the summer. As for going out alone – I can’t. I try, every day but I end up physically rooted to the spot and can’t even open my front door because I’m so paralysed by fear. I do occasionally go out with someone but even that is now back to being very challenging and infrequent. It’s such a huge step backwards and I’m back to feeling imprisoned. Part of why I’ve not written about it is because I try to keep myself busy all day, every day in order to ignore how trapped I feel and how upset I am about this deterioration. I try to keep pushing through, to do at least something useful with my time and to achieve something, no matter how small. But I do feel crushed inside, so disappointed and I try to drown out the failing feeling as much as I possibly can.

So, that’s where I’m at and where I’ve been recently, with as much openness and honesty as I can cope with. As it’s New Year’s Eve and the socially acceptable (practically enforced) time of the year to look forward and prophesise about where we’ll be in future years, I’ll simply say this – I’m working my socks off, every day, to fight this condition, to one day be able to beat it. There are good days and bad days and better periods and worse periods and I’m currently struggling to see how I can get back to the level of functioning I was at 3 months ago, let alone the level of functioning I was at before being struck down by these hideous conditions. But, rest assured, I’ve done it before, and despite not having a clue how to right now and being scared senseless, I WILL do it again! I didn’t want to admit to deteriorating because I like to come across as strong. I’m regularly told I’m strong and I try to be that, to stay strong despite going through adversity, being dealt a shitty hand (sorry Nana), and not being where I want to be in life currently, but I feel weak and defeated currently and that’s the one thing that I don’t let people see or hear, but it’s the one thing that also stops me asking for help, that stops me from expressing stuff and that stops me from showing how scared I am that this will beat me. People around me seem to ‘know’ that I’ll be ok, that I’m strong enough to fight this and logically, I can see that and I know it too but deep down I don’t feel it. Deep down I’m terrified that that’s just a ridiculous, naïve hope and that this is as good as it’ll get for me. I refuse to accept that and I refuse to give up but sometimes those thoughts and worries take over and my strength gets up and leaves. That’s happened for the last 2 months and it’s why I’ve not told you all because I felt weak and admitting that felt like admitting my conditions have won.

So, there you go: mental illness – warts and all. This is an ugly post about the hideous depths mental illness takes you to, the warped thought processes it creates and the shame that often ensues. But I’m hoping it’s also got me back on track to be more open, be more honest and to really, truly tell you all The Truth, The WHOLE Truth and Nothing But The Truth about my life with mental illness. Happy New Year to all of you and thank you so much to each and every one of you for your continued support, for reading, sharing, commenting, emailing, anything you’ve done to interact with me and my blog. Having this outlet has made me feel so much less alone and has given me a platform to be able to help people which is my sole aim and purpose in life. Thank you all and see you in 2016, let’s hope there will be more posts about achievements and eventually even a post with the currently banned “I” word in the title but in the meantime I hope you’ll continue with me on my journey, the good bits, the bad bits, the ugly bits and eventually, I hope, the improvement!