In July, I was lucky enough to win Vlogger of the Year in the Mental Health Blog Awards, here I talk about that, the worst period of anxiety I’ve possibly ever experienced and the physical health problems I’m currently trying to deal with.
I posted this video on YouTube in April and forgot to post it here on my blog so better late than never, this shows a bad day for me with my anxiety during a very difficult time.
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 16th 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 16th 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 17th 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.
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!
It’s that time of year again where we hit the anniversary of me being signed off sick from work. I swear it comes around quicker every year. As ever, I don’t really know what to talk about but having noted this day in written-form for the last 6 years, it seems a shame to quit now so I’m probably going to do what I’ve done almost every previous year and ramble until I come to a close.
Yesterday, I thought I’d read through all of my previous posts written on this date each year to see how things have changed or stayed the same, to see how my writing style has evolved and to see if it would inspire a specific thing to write about. It was a strange experience. My sense of things is often at odds with how they actually are and this is most notable in my sense of my writing. Often, when I write a post, I think it’s truly dreadful and mostly a rambling mess. I take a big breath in and start reading through ready to attempt to heftily edit whatever meandering thought soup has been typed out. Almost every time, I’ll barely edit it at all because when I read it back, it actually says what I want to say in a surprisingly coherent, cohesive and interestingly written way. But it never feels like that when I’ve written it and I’ve never been able to work out why. It’s exactly the same with my vlogs. I suffer from dissociation symptoms and usually only get 2 lines into my vlogs which I start knowing a theme and a couple of examples and little to nothing else in terms of a plan, and then I dissociate and have little to no recollection of what I’ve said. It means I have to go back and watch every video before posting it to check I’ve not sworn or said anything I’m not allowed to and haven’t gone too personal or dark or overboard about whatever the topic is. As yet, there’s never been a video that I’ve had to edit, re-record or not post. But still, every time I feel I have to check because my brain tells me that these things are not things I’m good at, that I’m not a coherent writer, that I’m extremely negative and that I’ll say all sorts of things I’m not aware of or won’t make sense. This has never been the case but somehow that doesn’t change my viewpoint.
When I read back all of my previous anniversary posts, I expected the first few to be ropey and written in a completely different style from how I write now. It’s not something I’ve worked to improve upon, I just assumed that with practice and time and ageing that my style would have adapted or changed and possibly improved. As far as I could tell, it’s not changed one bit. I still punctuate in the same way, I still love sentences that are far too long and I still list almost everything in groups of three because it makes my brain happy to write like that. As for the content, again, I fully expected that to really change because I know my conditions have over time but again, it was surprisingly samey. Not in a boring way, but in a, this feels like it changes but sounds remarkably similar year on year sort of way. I’ve mentioned before that my anxiety attaches to different sources and these change a little over time so I can get more or less anxious about being observed doing things or my health at different points through my time of being ill. But the severity of the anxiety, the magnitude of it seems to stay quite constant and while it does improve and deteriorate, this is just the pattern it takes, like the changing of the tides really, there are high tides and low tides but one always follows the other and they don’t get more or less over time, they’re just high and low and high and low. The most common themes I noticed though are that despite it feeling like it changes, my confidence levels are mostly very low and my ability to sleep properly is almost always something I struggle with. I’ve used the phrase before that these things are sadly bad and worse and nothing outside that. It sounds super negative but there’s honestly no other way of describing it because I don’t ever seem to have periods of good sleep where I’m consistently sleeping 8 hours a night straight through and waking up in the morning not feeling like death, or periods where I suddenly feel confident or develop self-belief. I seem to wade through life constantly battling those things, always trying to sort out my sleep and always trying to force myself to do things that everyone tells me I’m capable of and that I’ve previously shown myself to be capable of and still permanently feeling like I’m not and that I’ll spectacularly fail. Those things are mostly a constant for me. I guess it’s why I find it hard to know what to write about because often, the only change is the passing of time or what’s happening in my personal life, my inner life doesn’t really change all that much and so I tend to run out of words or ideas for a new spin on the same very old idea that it’s absolutely no fun at all to be ill with anxiety disorders.
One thing I have noticed is that despite the past year being exceptionally challenging for me due to personal circumstances and events (more info on this can be found here), in some ways my anxiety has felt more stable at points too. It certainly hasn’t been stable at the points where my world was turned upside down with benefits decisions and diagnoses and deaths of family members, but the bits in between have seemed like they’ve been a bit more stable. I think this might be because expectations on me have been lower than ever before thanks to the pandemic. It’s no longer expected for me to go out, to socialise, to be able to go shopping or to parties. For months at a time, we’ve been required to stay indoors, stay solitary, and keep ourselves safe. In some ways this has given me the space to just be and to not be constantly reminded of all of the things I can’t do but I do wonder how this experience might change as the world opens up again and those things all become encouraged once more. I’m also fully aware that my view on all of this, as ever, is hugely skewed by how I’m feeling while I’m writing this because for the last couple of days my anxiety has levelled off after a week of it being off the scale and so the relief that brings is all-encompassing and often blinkers my view of how good or bad things have previously been. I’m not very good at gauging that kind of thing. Just like my writing and my videoing, if I’m feeling good right now then things have been pretty good and I forget the intensity of the badness that I’m not feeling currently but if things are bad then I often also forget the intensity of the good periods too. It’s part of why I always intended (though never achieved) to blog regularly because I very much write in the moment and once that moment passes, my thoughts and feelings and take on the world shifts a bit. It’s why I usually have to create content all in one go because if I lose my flow, if I go back to it on another day then I’m almost never in exactly the same headspace as before and I lose all of the potency of the point I was making because it’s no longer quite as relevant to me.
I’m not sure that any of this sums up where I’m at right now because to be honest, I’m not really sure that I know. My Grandad died 10 days ago and that’s been a lot to take in and get used to on top of the anniversary of the UK going into lockdown, the illness and death of my Mother-in-Law, so much political turmoil about so many different things and spending almost a year fighting to be awarded disability benefits. I’ve spent a lot of the last year feeling like I was drowning and gasping for air. I spent more time than I care to remember genuinely wishing I was dead for the first time in a long time because things had got so bleak. I tend to look at the past, inadvertently, with rose-tinted glasses. I know the facts of how suicidal I was at points but because I don’t feel like that right now, I don’t feel that it was that bad but at the time I do still remember having to get myself through the day in parts because I just wasn’t coping. I know I’ve suffered from increased isolation and loneliness but also increased connection and communication and that’s been quite confusing. This year has been the year I’ve been least productive out of all of the years I’ve been ill for and I’ve found that so hard. I hate just existing and not having anything to show for my time and feeling like I’m just wasting time, life, waiting and wishing away the days until I feel better. I tend to avoid writing about the future because I know all too well how little control I actually have over that and so often I think that a little plan or a little aim will so obviously be doable that I’ll set it in stone here but I now know that’s not how it works and life twists and turns and often your plans and aims don’t keep up with you. Of course, I wish that by year 8’s post I’ll be telling you that I’m recovered and all of the wonderful things that would come with that but the realist in me tells me that’s quite unlikely. I’m just hoping more positive things will have happened this coming year, that I’ll keep the connection and communication I’ve built with people around me, that there will be less illness and death to contend with and that I’ll find my passion for something again and be able to get my teeth into a project, it’s been such a long time since I did that and it really is time.
If you want to go back and read all of my previous anniversary posts, they can be found below:
Finally an update explaining where I’ve been and why I’ve not been posting for such a long time.
I don’t even know how to express how soul destroying it is to apply for disability benefits in the UK. I know about the system because when I was a child, my mum claimed Disability Living Allowance for me because I suffered from pretty severe ME. It was no fun filling out the 40-page form of all the things I couldn’t do and the help I needed but thankfully for me, my mum did most of it and she got help from an organisation and it was pretty smooth sailing.
Fast forward to February 2020 and my partner finally persuaded me, 6 years after becoming severely ill with 3 anxiety disorders, that I really was entitled to some financial help and that I should be applying. I’ve known for years I should be getting it but I just couldn’t face doing it because I knew how it would go because I’ve known a lot of people go through this system. Despite knowing exactly what would ensue, it somehow didn’t ease the effect it had on me. Had I known how much it would affect me, I’m sure I’d have never agreed at all. It’s made me so ill and it just seems to keep getting worse as each time they assess me, I’m disbelieved, doubted and misconstrued. It just eats away at you.
In order to get through my life day to day, I mostly ignore that I’m ill. I don’t focus on what I can’t do, I don’t think about myself as an ill or disabled person, despite knowingly and willingly identifying with those labels/descriptions, I just get on with what I can do and adapt as much as possible so I’m able to function the best that I can. But when you’re applying for disability benefits, obviously the focus is all on the negative and that would be fine if you only had to jump through those hideous hoops once. But you don’t. I’m now on my fourth attempt at getting them to believe the severity of my symptoms, my limitations and the amount of help that I need. I’ve already filled out their 40 page form, I’ve already spoken to a stranger for an hour on the phone where I tried my very best to answer their questions and give as much information about my situation as I could which all then got twisted. I then had to ask them to reconsider their decision after they scored me just 2 points and wrote completely inaccurate and dismissive statements that genuinely made us wonder if they’d mixed up my case with someone else’s because it was so wrong. After another inaccurate and assumptive judgement from them, I’m now having to appeal. All of this whilst navigating a global pandemic and the deterioration and death of my mother-in-law from terminal cancer just 5 days after the last decision letter came through.
Regular readers of my blog will know that despite not feeling it, I’m a very strong person who’s gone through a lot and continues to get up time and time again to keep on fighting through but honestly, fighting to get the government to believe that I’m ill enough that I deserve some money, and not a huge amount at that, is feeling like it’s too much to bear. I have to keep going into more and more detail about what I can’t do, the ways in which I fail, the ways in which I’m defective, the things my partner has to do to care for me and keep me as well as possible. I just don’t want to keep doing it. But I deserve this money, I’m entitled to this money and I should’ve had it for the last 6 years and because of their ludicrous system, I couldn’t bear to put myself through this to try and get it and so I’ve missed out. I’m trying to make a stand, to say “no more”, but every day I feel like throwing in the towel and just disappearing back into my own little world where I don’t have to perform like a circus animal to prove that I’m suffering and worthy of help.
On top of all of that, I discovered that they haven’t even used all of the evidence I sent them when I originally applied. Most notably, they haven’t used my diagnostic letter where my psychiatrist, who by chance has known me since I was 18, diagnosed me with the 3 anxiety disorders, I still suffer from, in 2015. Instead, they’ve used the 2 letters from before that in 2014 and an update letter from him in 2019 that literally says they’ll keep me on their system and doesn’t mention my conditions at all. I’m desperately hoping that this can only serve to strengthen my case at appeal but I just can’t understand why I’m at the point where I’m having to appeal, I should’ve just been awarded the money in the first place. I know this happens to thousands of people in all sorts of worse off, more obviously denying situations but that doesn’t make this any more ok that I’m one in a long line of people who’ve been unfairly rejected. I know all too well the stigma that goes along with claiming these benefits and that many lay people want the system to be stringent to weed out the benefit frauds but honestly, I don’t know how anyone who’s fraudulent would have the time, energy or persistence to get through this and actually win and the fact that 75% of decisions for this type of benefit get overturned at appeal screams absolute volumes that this system isn’t just overly harsh, it’s damn well corrupt. If 75% of any company or individual’s work had to routinely be checked, changed or overturned, you’d be hauled up before your manager or MD before you knew what hit you and you’d be sacked or taken to court for misconduct but somehow, because it’s the government and government-contracted companies, it’s all ok. But there’s no accounting for the human cost in this. I’ve noticeably deteriorated and coped worse with the other shit in my life thanks to this. I’ve seriously considered suicide on multiple occasions, not because I want to die but because I want this to stop and I want to stop feeling like a burden. That’s what depths this system takes you to. Anyone around me will tell you that despite not being an optimist and being a very realistic person, I’m bloody brilliant at making the best of things and being inventive about how to live the best life I can and yet applying for benefits to get money to help me live my life more comfortably and independently has got me to the point where I’ve seriously considered ending it because it feels and seems so unbearable.
I don’t even know how to end this post because I’ve been meaning to write about the process throughout so that you could go on the journey with me but I just couldn’t face it. In fact, the only reason I wrote this was to get my thoughts and feelings out in the hopes that it would make it easier to write my appeal objectively rather than emotionally and in the hopes that I might get enough of it out of my brain that I might sleep properly for just one night. I can’t even remember the last time I did that. The process is shocking from beginning to end from the assessment forms that are so heavily skewed towards physical disabilities with a couple of mental health questions thrown in that they can’t possibly capture what living with these conditions is like to the phone assessment with a nurse who spent almost the entire call emphasising the wrong condition and symptoms no matter how many times I tried to clearly explain what I was claiming for and why, to the decision letters that are filled with grammatical and spelling errors that are clearly created from copied and pasted statements that don’t remotely fit your case and make you wonder if they’re even assessing you, to the pages and pages of written information that you receive that you haven’t got a hope in hell of being able to take in and process and yet you still have to in order to basically beg for some money. And finally, the assumptions they make that because you’re bright and you have a degree that you’re capable of those things now, that you’re making up the disabling effects these conditions have on your life and that although you might “prefer to go outside accompanied” that there’s no evidence that doing so would cause you to suffer overwhelming psychological distress despite being diagnosed with agoraphobia that literally has that as one of the essential diagnostic criteria. I won’t be committing suicide, I’m not letting them off the hook, but this system needs calling out and exposing for the vile, corrupt, hoop-jumping exercise that it is and I’m going to fight in every way that I can to get what I deserve.
Today I thought I’d give you some specific insight into what it’s like to live with severe anxiety. I often talk in sweeping statements and generalisations and I think people don’t realise what the nitty-gritty, day-to-day life is like because it’s not always rolling from one panic attack to another, it’s much more subtle, specific and random than that. I’m currently going through yet another very bad period of anxiety. I’m never really sure when I’m not going through one of these and the only way of describing the last 6.5 years is bad and worse. I don’t often notice the times when it’s bad until it gets worse and then I can recognise that what preceded was indeed “just” bad but it’s not better and worse. Like pain if you’re still feeling it will always hurt, it’s more and less, but not better. So I’m anxious and more anxious through periods of weeks and months.
As I said, currently I’m going through a particularly anxious period but it doesn’t necessarily look like you’d expect. It does include the typical worrying for hours on end about everything my brain can possibly imagine. It also includes having panic attacks about justifiable things, as well as not. But the things that you’re probably not aware of are what I want to talk about here.
- It’s being tired all the time but so wired and highly strung that you can’t sleep.
- It’s being exhausted and unable to keep your eyes open during the day and then your mind racing at 100mph at night and almost being too frightened to go to bed because it’s so severe.
- It’s feeling sick and a feeling of dread in the pit of your stomach but with no reason or cause.
- It’s your brain constantly scanning for whatever the threat is and then it picking something at random and fixating on that until it scans again and finds something new.
- It’s not being able to remember things or take in new information.
- It’s reading the same paragraph over and over again and knowing you’ve read those words and willing yourself to concentrate and take it in this time and still having no idea what it says.
- It’s feeling full of completely useless energy and almost buzzing but your brain feeling like a frantic fly that just constantly throws itself at a pane of glass despite being next to an open window.
- It’s forgetting your medication, day after day, and never managing to put two and two together and realise that you’ve forgotten it and that’s why you’re feeling extra wired and your heart is beating out of your chest.
- It’s being hungry and having so many choices for what to eat but spending hours not deciding because none of those things make sense in your head anymore.
- It’s not being able to multi-task and having to mute the TV or turn it off because it’s too distracting while you’re reading a text or realising that you’ve missed 10 minutes of your programme because you’ve gone temporarily deaf whilst scrolling through Facebook.
- It’s having so many hobbies or projects that you could continue or start and not being able to pick one.
- It’s watching stuff you don’t even like on TV rather than stuff you’d love on catch-up or DVD because you can’t commit or decide on those and spending hours watching mind-numbing stuff just because it’s on.
- It’s aimlessly walking from room to room in the hopes that inspiration will strike and it never doing so.
- It’s looking out the window and watching the world go by, everyone having a purpose and you just wasting day upon day like this.
- It’s flicking through recipe books desperately wanting to make something knowing full-well you can’t decide and aren’t capable of making anything much more complicated than toast.
- It’s having responsibilities or ambitions and watching them fade away.
- It’s having dreams and goals and watching them fade too.
- It’s going without meals or eating snacks instead because you just can’t decide what to make and you can’t work out how to do it anymore.
- It’s wishing that you could have certain meals and knowing that you can’t because there’s no one there to make it for you and you’re not able to do it yourself.
- It’s losing even the most basic routines that you’ve built up and forgetting to make enough drinks over the day.
- It’s running out of crockery because you didn’t time the washing-up well enough.
- It’s remembering and forgetting multiple times a day to do the same chore or send that email or message and realising at 11pm that yet again you’ve not done it.
- It’s writing lists of tasks to do in your diary each week and writing over 50% of that list again the following week and the week after because you’ve still not done the tasks.
- It’s forgetting to look at the lists and feeling like screaming because this is so basic and you still can’t do it.
- It’s checking and re-checking things because you can’t remember the answer and you stop trusting yourself.
- It’s your tinnitus ramping up to deafening volumes.
- It’s hearing your neighbours going about their daily lives through the walls and floors and feeling so alone and lonely.
- It’s wondering how you ever functioned normally and how you ever got a degree when you can’t make a roast dinner or read a book anymore.
- It’s not being able to write a shopping list.
- It’s feeling sick at the thought of a timetable because you know that’ll just increase your feelings of failure when you inevitably don’t stick to it.
- It’s wanting to scream and shout and cry and just sitting in numbness.
- It’s wishing that you’d die and then instantly panicking and taking it back because you feel selfish and unworthy and you don’t want to cause others pain but wishing that this pain that you’re living with would end.
- It’s wondering about suicide and realising that you don’t actually want to die you just don’t want to have to live like this anymore and you can’t see a way through or a way out.
- It’s wondering how you can possibly make someone understand what this is like and then worrying that you will because you know how much it’ll scare them.
- It’s being paralysed by fear.
- It’s being mentally stopped from even starting anything because you’re so worried about failing even though you know that not even attempting things is a type of failing.
- It’s wondering if this is it and if it’ll ever get better.
- It’s wondering what you did to deserve this.
- It’s wearing the same outfit days in a row because you don’t know how to choose a new one. It’s not being able to make decisions of any kind.
- It’s not being able to concentrate.
- It’s scrolling through Instagram and seeing so many craft projects that you’d love to try and never even trying to start one.
- It’s being unable to work and having no responsibilities and still feeling like you have no time to do anything and never really ever getting anything done.
- It’s wishing you could be someone else.
- It’s feeling guilty all the time.
- It’s feeling insignificant and over-noticeable all at once.
- It’s feeling like a burden and wishing you could disappear.
- It’s being desperate to make a difference, to help people and knowing that even with your limitations you could do it and never quite working out how or where to start.
- It’s promising yourself over and over again that you’ll change and do things differently and it never happening.
So there you have it, a snapshot into the day-to-day difficulties of life with an anxiety disorder. That list is why it’s so difficult to explain succinctly what it’s like to live with. I don’t have particularly specific sources of anxiety, there are groups of situations I experience huge anxiety about including anything social and anywhere that I could get trapped but those are so huge, wide-ranging and general that it’s hard to give an accurate or detailed picture of what life each day is like and why I’m so unable to do things like sort out my own meals on a regular basis or fill my day productively, the list above hopefully gives more insight into why those things and so much more are so difficult.
It’s been an absolute age since I last wrote a proper update. As time passes, I feel like I have less and less to say and yet, so often, I’m desperate to write, to say something, to try to make a difference but I remain silent. I can’t even tell you how many half-written blog posts I’ve started and abandoned. They’re all saved, they all start off with promise, with a point or a purpose and before I know it my confidence dies again and the words dry up and I post nothing. It means that every time I do attempt to post I feel the need to explain, justify, and apologise because I never intended to be so sporadic about posting. I planned to show up regularly, for this to be my space that I’d carved out to inform, educate and share my experiences with the world. But somehow I always talk myself out of it.
However, today I’m here and hoping it’ll be different and that this won’t be left unfinished and saved and never seeing the light of day again. There are so many things going on in my life that it’s hard to even know where to start but the thing that made me open the document and start typing was that I’m getting worse again. I’m sure it won’t last like this, it happens regularly, almost always when there’s way too much difficult stuff going on in my personal life for me to handle, but it never feels temporary at the time. It’s always a shock when I get worse because my daily life is challenging at best and I live with some level of symptoms every day. But when I deteriorate everything is ramped up. Today for example, I’ve had 3 panic attacks and cried twice. Today’s not a special or challenging day, nothing was planned, nothing happened, but I’ve spent the whole day just feeling completely unable to cope. For weeks now I’ve felt like I’m drowning. Most of my waking moments I feel like I can’t get enough air and my sleep is worse again. I feel stressed and on edge the whole time and I’m so irritable and at times I’m becoming aggressive because I’ve just had enough of everything.
One of the biggest contributors to this deterioration is that I finally applied for disability benefits. I’ve put it off for 6 years because I’m so aware of how awful the process is but I was finally persuaded into applying in February. It’s been a long and arduous process. A 40-page form to fill out where I had to detail all the things I can’t do, the things I need help with and the ways in which I fail to function. 4 months later I had an assessment on the phone which was terrifying but I thought it had gone well. 2 weeks after that I got my decision letter through saying not only was I not entitled to anything but a whole load of lies, assumptions and errors which just felt like a personal attack. While I know the system isn’t personal, having it implied that you’re making up the severity of your condition when you’ve been disbelieved about your suffering for two thirds of your life is immensely damaging. It absolutely floored me and sent me into a tailspin. I’ll be completely honest, it made me seriously consider suicide. Thankfully I was able to talk myself round and my determination to fight has returned and so I’m going to do my damndest to get what I know I’m entitled to but my god has it made me ill just trying to keep my head above water. On top of multiple other horrible circumstances I’m living through right now, this was the last thing we needed.
As ever, it just feels like it’s one thing after another. It’s relentless. The anxiety is so ramped up that I’m regularly having panic attacks because of ridiculous things making me jump. Examples just in the last fortnight have included Joe getting too close to me, a seed blowing across the floor, Joe’s shadow, my own hair, the window cleaner, a fly, Joe speaking unexpectedly, and the remote control getting knocked. I spend most of the time, nearly every day at the moment feeling like I can’t cope and wishing I could just sleep. I’m so exhausted and utterly burnt out but I’m lucky if I get 7 hours of broken sleep a night at the moment. My concentration is absolutely shot and I can focus on almost nothing. It’s got so bad that I tune out during conversations or TV programmes that I’m watching because I just forget to listen. My attention span is a few minutes at best so I can do almost nothing. I’ve not done any colouring for weeks. I’ve had embroidery threads out for a project for 2 weeks and I still haven’t even cut the fabric or transferred the design. My brain feels like it’s running at a hundred miles an hour, constantly seeking out new sources of anxiety and fear but never able to settle into anything useful. I long to do one of my hobbies, to be able to do something other than mindlessly scrolling through social media, taking nothing in and just intensifying my loneliness. For weeks I’ve thought multiple times every day about taking diazepam to take the edge off and try to get through a little better because this is just unbearable. It gets so bad that it feels like it’s killing me from the inside out. I know this must sound dramatic but honestly, this doesn’t even capture the true severity of how intolerable and unending this feels. I guess it’s little wonder that in the midst of all of this, receiving an assessment saying that I’m basically fine was the final straw to me being able to fight this latest relapse.
I’ve not really worked out what point I’m trying to make in this post. I always try to have a purpose for them, a specific thing to say or message to impart but right now, I can’t think of one and I’m not sure I started with one in the first place. I guess I just wanted to share what this is like, to explain that 6 years on, it’s often still like the first time, that I still go through periods of my panic attacks ramping up to multiple times a day with no specific triggers or reasons and the little functioning I’ve built up gets torn down again. I always try to give a full and honest picture here of what it’s like to live with these conditions and this is part of that. I can’t go into detail about most of the reasons why things are so hard right now, perhaps I’ll be able to in the future but we’re in for a very rough ride and I’m already really wishing I could get off. I’m sick to death of the existential dread that seems to just shroud me at the moment. I want to breathe normally and freely again and not keep feeling like my heart is about to stop or the oxygen is running out. I know I’ll get through this, I always do but I wish the process got easier and quicker.
Written on August the 27th.
Yesterday I got an unexpected phonecall. It was a private number. That always fills me with dread. What I really wasn’t expecting was that during a global pandemic, while my country is on lockdown, my mental health service would phone to discharge me. A lot of what ensued is a blur. I was on my back foot from the start and was just completely stunned that a stranger was calling me and trying to discharge me back to my GP. I’ve not been checked up on during this crisis so when this woman introduced herself and where she was calling from, I was immediately really pleased and impressed that they were phoning to see how I was. They weren’t. In fact, I don’t think I got asked any questions about how I am, how or if I’m coping or if I’m getting enough support. She went straight in for the kill and said they were planning on discharging me. I then spent nearly 20 minutes trying to find out why, what that would mean, how I can stay on their books, what criteria I have to meet, all the while trying not to burst into tears and have a panic attack.
More and more unexpected information came out during this phonecall including the fact that my psychiatrist retired in September or October which I’d not been told. I apparently should have been written to by him but even she couldn’t find a record of that letter on their system. He had, seemingly wrongly, promised to keep me on their books until I was well enough to attend treatment in the future. He’d apparently promised this to a lot of patients, all of whom I’m assuming are getting the same out-of-the-blue phonecall passing them back to their GP with no warning or support. It means that I’ll no longer be allowed to have visits from my support worker, the only professional involved directly in my care who actually sees me and knows what I’m going through and how damned hard I’ve worked despite the lack of visible progress or improvement and who continues to support and boost my confidence and self-esteem and treat me like a valuable human being. She has to work under a clinical lead and I’m not allowed one of those because I don’t fit the criteria and so she won’t be allowed to work with me either.
I know that mental health teams are increasingly underfunded. Before all of this, I worked in one. I know all too painfully the limitations of the services, the understaffing and the squeezing from all angles. I’ve tried to make myself as little of a burden as possible on the NHS and specifically on my local mental health team. I’ve not agreed to appointments unless I really believed I’d be well enough to attend. I stopped booking them when it was making me worse and I was becoming unreliable at attending because I didn’t want to waste appointments that could be given to other people. I didn’t agree to have therapy that I’ve previously had that I knew wouldn’t help me and that again, I wasn’t well enough to attend. All I asked was to see my support worker for an hour every couple of months and to be kept on their books, under a named psychiatrist, so that I didn’t have to wait weeks to be re-referred in the future by a GP surgery where I’ve met none of the doctors and the last doctor I was under kept me on a medication that my psychiatrist described as basically poisoning me with horrendous side effects.
Oddly, this phonecall came the day after I had a completely unexpected letter from the same team telling me that an appointment had been booked for me to have a telephone consultation with a new psychiatrist. I have no idea who booked this or why and the lady on the phone yesterday wasn’t aware until I highlighted it and she checked my records and even she didn’t actually know why it had been booked. I was already stressed and anxious because of this random appointment but it also really upset me and made me pretty angry because I begged to have telephone appointments 5 years ago so that I could still engage with support but not make myself really ill trying to go to appointments. I was always flat-out refused this and told that it was completely impossible. I know that we’re living through “unprecedented times” right now and that people are having to change and adapt their work in order to maintain services during this pandemic but I cannot for the life of me work out how it’s possible, doable, and acceptable to have telephone appointments with a psychiatrist now, when a few years ago it was completely impossible even though that meant that I had to stop having any support from a trained professional because I was too ill to do it in the way that they offered.
All I kept being told yesterday was that their service only offers time-limited, goal-specific help, none of which I’ve ever been well to engage with because the offerings are so limited and are all aimed at people who are much less ill than I am. All I’ve ever been offered (apart from medication which we’ve all agreed I can’t and shouldn’t take again) is 6 sessions of CBT and group art therapy run by a support worker, the same job role I had when I was working. Yesterday, I asked what people like me are meant to do, those of us who are too ill to engage with what they offer and she said there were community treatments, all of which she acknowledged required you to be well enough to physically attend. I’m severely agoraphobic. I can’t go out. So the upshot seemed to be that there’s nothing for me, no service, no treatment, no one to keep an eye on me or make sure I’m not spiralling. No one unrelated to me who I can talk to about how this is actually all making me feel or what it’s like to live like this which actually leaves me with no one to talk to about that because I just can’t bear putting that on people around me. My social network has reduced and reduced over the years of my illness and each time I’m struggling, there are fewer people to talk to and I feel further and further away from them and from normality. I’m good at getting through the day-to-day stuff, I’m great at ignoring my limitations and working within them to the point where I sometimes forget that I’m ill and often forget what I’m not capable of until I’m rudely reminded by circumstance and it all comes flooding back. I don’t have people to talk to about how frightened I am, about how much my belief and hope are fading as each month passes. It’s not because I don’t have people close to me, it’s because I can see how painful it is for them when I talk about these things and I know that what often keeps them going is my grit and determination and continuing belief that I’ll get better. I don’t have the heart to tell them that I don’t know if I believe that anymore and that although I mostly do think that I’ll be better, albeit not cured, one day, that image is increasingly vague and I’ve got no idea of how to get from here to there, what to do to make it happen or when it may occur. Never in my wildest dreams did I think I’d be 6 months from turning 30 and still severely agoraphobic and unemployed. I know I achieve a lot and this isn’t meant to be a pity-party but it’s very hard to keep yourself going, day after day, year after year, when you have to fight for even the basics of medical support and then have that randomly threatened with being removed.
The only reason I’m not now discharged is because of this mysterious appointment that’s been arranged for me. She eventually agreed that I could speak to the new psychiatrist and see what he says and that we’d “discuss it”. So now, I get to spend the next month, waiting and trying to work out how or even if I should try and persuade them to keep me on their books. Because even if I manage to stay this time, how long will it last? It will always be hanging over me. They offer me next to no support and no treatment anyway so in many ways I won’t be any worse off without them. But it feels like I’ll be even more alone, even more adrift and cut off from reality, normality, and help. It makes me sad and angry that people like me are just abandoned. That we’re so ill we can’t function and are essentially punished for that by having accessible treatment denied. So many people have the opposite problem of needing help but not being so ill that it’s deemed necessary and having to wait until they deteriorate before anyone will treat them. Increasingly it seems that there’s a right way of being mentally ill and more and more of us are failing to do it that way and then get denied treatment. I can’t make my illness fit in with the criteria they set, I can’t get myself well enough to attend the treatment that they say will get me better and so rather than bring any of it to me or even keep it paused until a miracle happens and I can get myself there, they decide that I look bad on their books and need to go. I wonder how many people out there exist as I do? I don’t think we’re even counted. They know how many people have a diagnosis, how many people went through therapy, how many people had a psychiatrist. But once I’m discharged, I won’t exist anywhere as a statistic. I won’t be counted as one of the people they failed, I won’t be listed somewhere as one of the people who was so severely ill that they couldn’t be treated. I’ll just disappear. Even statistics for houseboundness don’t seem to exist. I’ve looked and looked over the years and never found anything that even attempts to give numbers to how many people are physically or mentally ill enough that they’re confined to the house. I know there are many of us. The sheer number of people who, well-before lockdown or Coronavirus, were arriving at my blog because they wanted advice or help to cope with being housebound, is huge and I’m just one blogger with a small following and a pretty small reach. There must be thousands of us. But we’re all hidden away and mostly we’re forgotten about and just left. Lockdown has shown just how hard living your life indoors is to the masses. People are going stir crazy. They can’t work out how to entertain themselves, how to stop eating every 30 minutes, how to work, how to get medical help. This has been my life for 6 years and I’ll tell you for nothing, there’s never been a better time to be housebound because of the sheer number of free resources that have been released. So many things have adapted and been made accessible so that life can continue despite us all being indoors and still it’s unbearable for many people. Spare a thought for those of us for whom this is our life permanently, who don’t get to do PE with Joe or have church services via Zoom or watch Andrew Lloyd Webber musicals in our lounge the rest of the time. The majority of the time, these things are completely inaccessible to people like me and now even mental health treatment, in the midst of a pandemic, is being withdrawn because I don’t fit into the box neatly enough. As yet, I’m undecided about what to ask for in this appointment and whether I’ll put the energy into trying to fight or just give in this time because as seasoned readers of my blog will know, absolutely every step of the way, I’ve had to fight to get any treatment or support and I’m so unbelievably tired of doing that and being let down. I always thought that I’d get through this on my own, in my own time and I have no idea if that’s true but it looks like that’s the only option I’m left with and I’ll just have to hope that one day, the solution will reveal itself and I’ll somehow get from here to “better”.