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 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.

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

October the 10th was World Mental Health Day and this year’s theme was dignity. I originally thought this didn’t apply to my situation because I am, mostly, dignified whilst being ill and treated with dignity, or so I thought. I started this post by looking up the definition which I found to be as follows:
Dignity – The state or quality of being worthy of honour or respect.
As soon as I read that, I realised that I was wrong – while I may behave in a dignified manner, I’ve certainly not always been treated in a dignified way and have often not felt worthy of honour or respect because of the way I’ve been behaved towards.

Dignity is something that is often overlooked when treating people with mental health problems and we are often not given the respect we deserve. Sadly, this behaviour is often directed towards us by the very people who we have sought help from, who are trained to deal with our conditions and who we are reliant upon to offer or refer us for treatment. Is it any wonder then that it takes most people such a long time to even go to their GP when they suspect they may be mentally ill? Stigma is still rife within our society and while it is improving and openly stigmatic behaviour is starting to reduce, there is still a really long way to go and unfortunately, nowhere is this more necessary than within the medical community.

My experience of seeking treatment has been very varied and it’s often a very lengthy process. Even when I’ve gone to my GP about physical problems, I’m often disbelieved or it’s assumed that my symptoms are psychosomatic or even made up – all because I have a mental illness. I’m regularly talked down to, patronised and treated with condescension and this has very much put me off doctors and seeking help unless I really have to because I simply don’t have the energy to fight for someone, who should be understanding and sympathetic, to even believe me. Couple with this, the responses I’ve had from doctors when attempting to get a diagnosis or treatment for my mental illnesses and we’ve got one hell of a problem.

A month before I turned 16, circumstances in my life led to me feeling incredibly sad and low and unable to cope anymore, pretty much over night. Mental illness was not something that had featured in my life up until that point – none of my relatives or friends were ill to my knowledge and my only experience was that of over-hyped and dramatized portrayals in the media of violent offenders and people muttering to themselves and rocking whilst strapped into straight-jackets in padded cells. So when I started feeling low and it didn’t go away, I didn’t know what to do. I thought people would think I was silly and that I should just be able to cheer myself up because nothing terrible had happened, no one had died, I hadn’t been attacked, things were just going wrong at home. Eventually, after 2 months of never feeling better, I finally plucked up the courage to go to the doctors. I thought I was going to get sectioned or medicated but I didn’t know what else to do and the thoughts I was having were starting to scare me. I explained to my GP what was wrong and that this wasn’t normal for me. After 10 minutes she told me that it was “January Blues” and “every teenager in the country is feeling like this at the moment”. I said to her at the time that there would be a lot of suicides if that were the case but I was sent home and she did nothing. Two months later I went back, I’d started self-harming and was feeling suicidal every day, she took one look at me and referred me to the Child and Adolescent Mental Health Service because I was very ill and needed help. The first doctor I met there was great, he treated me like a person and was very respectful and understanding about how bad I was feeling and that something needed to be done about it. I wasn’t so lucky with any of the other staff I met there. I was allocated a nurse who I saw once a week who spoke to me like a child and contradicted me every time I said I was feeling worse. I was put on medication more than once and never monitored properly and then told off and admonished when I took myself off it because it was making me suicidal and I felt unsafe. I felt like a naughty child, not a 16-year-old who clearly knew their own mind and felt in danger.

Fast forward to 18 months ago and dignity was thrown out the window by my new GP who decided that telling me to “try harder” whilst dealing with crippling side effects from medications that were later described by a psychiatrist as “virtually poisoning you”, was the best way forward. I practically had to beg her to even refer me to a psychiatrist despite having a history of medication-resistant depression because she felt that I didn’t need one and she was doing a “perfectly good job of treating me herself”. Eventually she conceded and I was able to see a psychiatrist. This has been a good and bad experience. I’ve been lied to, fobbed off, ignored, disbelieved and dismissed. At points I’ve been spoken to like the knowledgeable, well-educated adult that I am who is well aware of the limitations of the NHS and who has studied, worked in and experienced as a patient, the mental health services in this country. But that has been rare. Instead of treating me with dignity and respect, most decisions about my treatment are made without me, often without my knowledge and my very character is often questioned when it’s assumed that my conditions simply can’t be as bad as I’m describing. I highly doubt cancer patients are treated like this when vomiting because of chemo or dealing with hair loss – are they told by doctors to just “try harder” or “stop focusing on the negative thoughts”? I think not! So why am I? Why am I dismissed and treated with so little respect?

It’s clear that many doctors have never been mentally ill, and they’re very lucky. But for those of us that are, it’s hard enough trying to deal with the conditions we have and the things that go hand-in-hand with that like low self-esteem and self-worth without having to deal with doctors judging us, accusing us of faking it, exaggerating, or causing it ourselves. It’s so hard to pluck up the courage to even go to the GP and admit that there’s a problem that you can no longer cope with or hide, without fearing how they might react to you. In an ideal world, we would all be treated as human beings, with dignity and respect, regardless of what symptoms or conditions we have. But currently, this isn’t the case. Something has got to change. Medical professionals, especially those that don’t work in frontline mental health services, are vastly ill-equipped and under-trained to deal with mental illness and instead of seeing people like me as people who are ill, they just seem to see us as walking labels. They still seem to have hugely stigmatic beliefs about us being in control of our conditions and able to just “snap out of it” or “pull ourselves together” and we’re treated accordingly, with disdain, coldness and even aggression sometimes.

First and foremost I’m a human being. After that, I’m many many things – I’m Lucy, I’m female, I’m 24 years old, I’m kind and caring, I’m creative, I’m a great friend. I’m also mentally ill but I’m not those conditions. I’m not anxiety, I’m not depression – I have those, but I’m not them. I am a human being and that entitles me to be treated with dignity and respect, regardless of what conditions I might have. The sooner I’m viewed as a person rather than a list of symptoms, the sooner I’ll be viewed as someone who is suffering and should be treated with dignity rather than a problem that needs to fixed or made to “see sense”. I might be mentally ill but I’m not mad, I don’t lie, I don’t make things up, I’m completely rational. If I say I’m ill, if I say I’m suffering then I’m not trying to gain another label or diagnosis for fun – I don’t get points for it, they certainly don’t convert to prizes. The only reason I seek diagnosis is in the vain hope that it might lead to treatment. Being spoken to in such a dismissive way has stopped me seeking help for most of my conditions and has had a major impact on my self-esteem because it makes me feel less of a person to have a doctor questioning me and treating me with so little respect.

Finally, while I’ve focused on the medical profession within this post, they are certainly not the only people that have not treated me with the dignity and respect I deserve. As you’ll have read in previous blog posts, I’ve been treated disrespectfully by a whole host of people throughout my time as an ill person and this has got to change. You can be that change. Next time you’re talking to someone who’s mentally ill, really listen to what they’re saying, don’t try to fix it, dismiss it, or make them see the positive – just listen. Then think about how you would want someone to respond if you’d just said all of that and were feeling that way. Chances are, you’d just want to be acknowledged, to be accepted and to feel heard. Most of all, you’d want to be treated with Dignity and Respect – you’d want to be Treated Like a Human Being. Be that change today!

N.B – A huge thanks goes to Steve “Squidoodle” Turner for his amazing Breast Cancer Awareness Ribbon Colouring Page which I coloured in green for Mental Health Awareness. If you’d like to get a copy to colour yourself, he’s generously offered it as a free download on his Facebook Page which can be found here. Enjoy and help raise awareness!