Eating Disorder

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!

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