An update about how I’ve been for the last 6 months, my anxiety worsening and starting therapy recently.
An update about how I’ve been for the last 6 months, my anxiety worsening and starting therapy recently.
It’s that time of year again and as has become my custom, I reread last year’s post to see if it would spark inspiration. It’s always interesting reading where I’ve been and where I’ve come from because I tend to live quite in the moment, from one event to the next and I quite quickly forget what came before. It didn’t overly help me with what direction to take this year or what topic to choose to write about. But one thing that did pop into my head at the very end of reading was just how long this experience has been and how significant this specific anniversary is. I realised that later this year I’ll have been mentally ill for half of my life and have spent a quarter of my life living with severe anxiety disorders. A quarter! I had just turned 23 when my world came crashing down around me and now I’m 31. Every time I say my age, and I say it a lot in order to remind myself of it, I’m shocked by how much I don’t feel that age. I know everybody says that as they get older and I’m sure it’s true to different degrees for all of us but honestly, I still feel stuck at 23 in an ageing body with lines becoming more prominent on my face but my soul never seems to catch up. I’m surprised by how I look in the mirror and often expect people to take responsibility off me or question my ability because I don’t feel old enough to be doing adult things. I’m always shocked when girls I went to school with get married or pregnant because I can’t possibly be old enough to be doing those things and then I remember that actually, I’ve been old enough for 13+ years!
The last year has been a particularly difficult one. The year before had been very dramatic with the pandemic kicking off, global lockdowns and my mother-in-law being diagnosed with and dying of cancer and then my Grandad dying 3 months later on her birthday. This year has been much less dramatic in terms of events though it’s certainly not been a walk in the park in that respect either but my mental health has nosedived a few times and I’m very unwell at the moment. In previous years although I’ve not shouted about it on my blog, I’ve been able to be more in control of my anxiety and stopped it from seeping into all aspects of my life, I was able to go out sometimes and got into visiting my Dad very regularly but most of that has been stripped away. I still push myself to do these things and I’m gradually pulling out the other side of a huge dip that started before Christmas but it’s been a really scary time and since drafting this last week I’ve taken another huge nosedive. In July last year my functioning dropped off a cliff, I couldn’t do anything for myself apart from shower and get dressed and even that wasn’t as regular as it should’ve been. I didn’t eat properly when Joe wasn’t home to cook and if I ate anything it was just junk food because I didn’t have the executive functioning to cook or even prepare fruit. I couldn’t even pick things to watch on TV I’d just turn on a channel and watch whatever was on for hours and scroll aimlessly on social media on my phone. I was absolutely terrified and it’s the closest I’ve got throughout all of these years of anxiety disorders to thinking that I was going to end up hospitalised. It feels really silly looking back on it because I knew at the time that a hospital couldn’t help me, my conditions are medication-resistant so there wouldn’t have been anything they could do but I was barely functioning and no longer wanting to keep myself safe and thoughts of suicide were constant because I just didn’t want to feel that way anymore. I was on the verge of a panic attack all day, every day for 3 days straight and this was the peak after weeks of my anxiety consistently increasing to unbearable levels. I was barely sleeping and waking up crying, drenched in sweat having panic attacks the few times I did sleep. I felt completely broken. I eventually told my mum and a friend about it and this seemed to just take the edge off enough that I was able to gradually pull myself out of the hole. For months afterwards I was on the edge of the hole looking in and trying to put as much distance as I could between me and it but never able to work out why I’d ended up in it in the first place.
A difficult few months followed including a family crisis that my support was required through. Amazingly, I managed to hold it together and keep going and actually continued to improve so I thought that awful period of anxiety was behind me, just a random blip. But by December I was back on the edge of the hole, staring into the abyss with no idea how to not fall in and after having awful anxiety for hours on Christmas Day and not calming down until 3pm it all came crashing down at home that night when I suddenly realised just how much I’m at the mercy and not in control of these conditions. I’d been meant to go with Joe on Boxing Day to see his family and I just couldn’t. I was awake for hours having had a panic attack at gone midnight and ending up sobbing on Joe and I felt completely panicked and out of control again. That feeling didn’t shift for a moment until 2 days later. For most of January I was firmly in the hole, having better and worse days but feeling on the verge of a panic attack multiple times a day on the better days and constantly on the worse days. It was horrific. It really scared both of us because we like to think that I’m at least partially in control of how bad this gets and that as long as I work hard, it won’t get worse than it’s been in the past but this was a really rude awakening for us that that’s simply not the case. By the end of January, I’d taken some tentative steps to remove myself from the hole and until this week I had been spending about half of the week, sometimes a little more, out of it and sat on the very edge staring in with the other few days sadly back in the grips of my anxiety hammering me at full force. I’m doing everything I can to spend as many days out of the hole as possible and to avoid doing anything that puts me back in but it’s certainly not easy. Each time I’m back in there it feels like it chips away another bit of hope because it feels like that path is better worn and easier to slip down. Having been back in the hole for the last 2 days and spending a great deal of time sobbing, having panic attacks and feeling totally overwhelmed, I’m back to fearing everything and wondering how I’ll ever not feel like this again, that’s how quickly it takes over. Thanks to how my brain works, the memory of how I was this time last year or any other times during the eight years I’ve been anxious for is hazy at best and I can no longer remember what it felt like or what I could and couldn’t do and why. I don’t know how I got here, or why, and I certainly don’t know how to get out but I’m trying hard to find a way and I have good people around me who are trying to help too.
This certainly isn’t how I envisaged I’d be feeling eight years in. I was meant to be off work for 2 weeks and then grabbing my career with both hands and riding off into the sunset. Even last year I thought I’d at least be doing better than then after such a challenging year that that had been. There are all sorts of things that have been going on behind the scenes that I’m not yet ready to share with you all and that’s been hard too. As someone who prides themselves on being an open book, mostly because I struggle such a lot with secrets or anything that isn’t 100% honesty, it’s very hard having all of these events and parts of me that I can’t currently share. Sometimes it makes me want to scream because it’s all fizzing away inside of me wanting to be let out but that doesn’t feel safe at the moment and I’m not mentally strong enough currently to deal with anything other than people being supportive and kind and accepting and so I have to keep all of that to myself. I’m writing and videoing content sporadically as I go that I intend to publish in the future when I am ready to share these things in the hopes that my journey can help others and also, because my memory at the moment is shocking and I’ll forget all of this and how it felt otherwise. I’ve never been very good at describing the past stuff, I’m much more a here and now documenter. I hope this will all make more sense one day and that people will understand why I couldn’t share now and be accepting of me then, that’s one of the things I’ve longed for most in life, to be accepted.
Eight years on, a quarter of my life spent anxious and nearly half of my life living with mental illness, I had hoped that I was tentatively coming out the other side of one of the worst periods of illness that I’ve had, I’ve got even less to show for my efforts than I had last year in terms of things I’ve accomplished or achieved but I’m still here, I’m still fighting, I’m still just about clinging onto hope and I’m doing everything in my power to get better and to recover some functioning and semblance of a life again. It’s proving infinitely harder than I thought but I hope that it’ll be worth it, one day.
If you want to go back and read all of my previous anniversary posts, they can be found below:
TW: Non-graphic mentions of Self-Harm and Suicidal Ideation.
It’s Children’s Mental Health Week and I wanted to share a few things because historically, mentally ill children have often become mentally ill adults. I’m one of them. While a mental illness doesn’t have to be a life sentence, if it’s not treated quickly and effectively, it can fast become one. I’ve long been documenting my present and past issues with mental illness and as each year passes I’m shocked by how many years I’ve given up to these illnesses. It’s certainly not been willingly. Thanks to originally being fobbed off by doctors as just another down teenager, who rapidly spiralled into full-blown depression and was then put onto unsuitable medication and given no therapy until I was able to go private 18 months in, I’m left angry and disappointed that I was left to fall so far into the hole of depression. I try not to spend time now wondering what life would have been like for me if that first GP had taken me seriously and immediately given me someone to talk to. Maybe I’d have still spiralled, maybe where I’ve ended up is exactly where I was always meant to, but I have to say, I doubt that!
I was 15 when I became mentally ill. A series of traumatic events led to me feeling unable to cope pretty much overnight. I sought help really quickly but I didn’t get it. Leaving me to deteriorate, for depression to take hold of my developing brain, with no concept or understanding of what was happening to me, leaving me to develop deeply unhealthy and damaging coping strategies that have left life-long marks on my skin, not to mention the scars inside my mind, has altered the course of my life. Where I veered off course into the path of illness, I’m sure I just needed a gentle nudge from the right therapist to get me back on track, to validate my struggles and confirm that life was difficult at the time and to teach me positive, healthy coping strategies to set me back on the right path. Instead, I’ve spent very nearly half of my life mentally ill, constantly sharing my headspace with the most hideous thoughts and feelings. It feels like a waste. It feels so unfair. I look at pictures of me as a child and I feel so sad for that little girl and what her future holds. While there are exciting and wonderful things in my life and those are the things I cling onto, there are so many tinges of sadness and difficulty and everything feels marred by my mental illness.
My anxiety kicked in out of the blue when I was 23. It hit me like a ton of bricks. It cycles up and down, lessening and worsening and morphing over time but never going away. Recently my anxiety has ramped up to a crippling level that has often left me in a crying heap and wondering how to continue because it feels so utterly unbearable. I’m 31 and I still don’t have any coping strategies that reliably work, although I’m proud to say that I have removed the unhealthy coping strategies and work everyday to keep those out of my life. Dealing with such extreme anxiety feels like torture and there are so many days recently where it’s felt like it’ll actually kill me. I get awful physical symptoms which I then become fearful of and the cycle continues and spirals. There are days where anxiety occupies my entire mind, no other thoughts come or go, just fear and panic crashing over in wave after wave. It’s completely exhausting. I often think when I’m writing these posts that those of you reading who are lucky enough to not have suffered mental illness must think these are exaggerated accounts that should be taken with a pinch of salt. I can assure you that not only is that not true, these descriptions only really scratch the surface of the things your brain can make you think and feel when it’s gripped by mental illness. It’s all-consuming and terrifying and what makes it even worse is the fact that this assault is being orchestrated by your own brain and yet you’re completely powerless to stop it. It grips you like a vice, pinning you to the spot and squeezing the life out of you and yet no one around you can see it, they can’t see why you’re struggling for air, or understand why tears are pricking in your eyes, or you’ve come over in a cold sweat. Nothing outwardly in your surroundings has changed and yet for you the fear has enveloped you and it’s all you can perceive. And for days now, weeks in fact, that’s been my near-daily experience.
When I’m feeling so unwell now, it’s hard not to look back, to look at where this began, to think back to when I knew there was a problem and plucked up the courage to ask for help, only to be fobbed off, dismissed and belittled. It breaks my heart to think of the 16-year-old sat shaking in her doctor’s surgery wondering if she’d gone mad and being so scared of what was happening in her head that she risked being forced into hospital which was what she was sure was going to happen. She had unscarred skin, she ate healthily and had good self-esteem, she just felt sad all the time and didn’t know how to cope anymore. I wish someone had realised something was wrong and rather than pretending everything was fine, listened to her, held her hand and helped lead her back to the light. I shouldn’t have needed to self-harm, I shouldn’t have needed to develop an eating disorder and I shouldn’t have needed to plan how and when I might end my life because it should never have got so unbearable that I even considered those things. For all of these reasons and so many more we desperately need to fund children’s mental health services, increase awareness of what to look out for and have quick and efficient assessment and treatment services to rescue those who veer off the path, so that mentally ill children no longer have to become mentally ill adults. I wasn’t destined to be like this, but my fate was sealed when mental health services tried to prove me wrong and talk me out of being mentally ill when I knew I had every reason to feel the ways I was feeling and had no skills to deal with it. Until we overhaul these systems, we’ll continue to have hundreds if not thousands more follow the well-trodden path from mentally ill child to mentally ill adult and what a complete and utter travesty and waste that would be. During this Children’s Mental Health Week I’d ask those of you who have children or who work with them to read about mental illness in children, to look up the signs and symptoms that something is wrong and to find out what to do in those circumstances, so that you’re prepared! Mental illness was much less known about when I became ill and it was barely mentioned in relation to children so no one around me had any idea what to do but things could’ve been so different if they’d known how to help. You can be that change and you could help stop a mentally ill child from becoming a mentally ill adult.
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!
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.
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.