An update about the Mental Health Blog Awards which I’m in the nominations for (links below), how therapy is going and the exhaustion which mental illness brings.
Mental Health Blog Awards Voting link – https://s.surveyplanet.com/nr1nm3nv
Mental Health Blog Awards Nominees – https://www.mhblogawards.com/2022-nominees
Voting closes on the 6th of June 2022.
An update about how I’ve been for the last 6 months, my anxiety worsening and starting therapy recently.
TW: Non-graphic mentions of Self-Harm and Suicidal Ideation.
It’s Children’s Mental Health Week and I wanted to share a few things because historically, mentally ill children have often become mentally ill adults. I’m one of them. While a mental illness doesn’t have to be a life sentence, if it’s not treated quickly and effectively, it can fast become one. I’ve long been documenting my present and past issues with mental illness and as each year passes I’m shocked by how many years I’ve given up to these illnesses. It’s certainly not been willingly. Thanks to originally being fobbed off by doctors as just another down teenager, who rapidly spiralled into full-blown depression and was then put onto unsuitable medication and given no therapy until I was able to go private 18 months in, I’m left angry and disappointed that I was left to fall so far into the hole of depression. I try not to spend time now wondering what life would have been like for me if that first GP had taken me seriously and immediately given me someone to talk to. Maybe I’d have still spiralled, maybe where I’ve ended up is exactly where I was always meant to, but I have to say, I doubt that!
I was 15 when I became mentally ill. A series of traumatic events led to me feeling unable to cope pretty much overnight. I sought help really quickly but I didn’t get it. Leaving me to deteriorate, for depression to take hold of my developing brain, with no concept or understanding of what was happening to me, leaving me to develop deeply unhealthy and damaging coping strategies that have left life-long marks on my skin, not to mention the scars inside my mind, has altered the course of my life. Where I veered off course into the path of illness, I’m sure I just needed a gentle nudge from the right therapist to get me back on track, to validate my struggles and confirm that life was difficult at the time and to teach me positive, healthy coping strategies to set me back on the right path. Instead, I’ve spent very nearly half of my life mentally ill, constantly sharing my headspace with the most hideous thoughts and feelings. It feels like a waste. It feels so unfair. I look at pictures of me as a child and I feel so sad for that little girl and what her future holds. While there are exciting and wonderful things in my life and those are the things I cling onto, there are so many tinges of sadness and difficulty and everything feels marred by my mental illness.
My anxiety kicked in out of the blue when I was 23. It hit me like a ton of bricks. It cycles up and down, lessening and worsening and morphing over time but never going away. Recently my anxiety has ramped up to a crippling level that has often left me in a crying heap and wondering how to continue because it feels so utterly unbearable. I’m 31 and I still don’t have any coping strategies that reliably work, although I’m proud to say that I have removed the unhealthy coping strategies and work everyday to keep those out of my life. Dealing with such extreme anxiety feels like torture and there are so many days recently where it’s felt like it’ll actually kill me. I get awful physical symptoms which I then become fearful of and the cycle continues and spirals. There are days where anxiety occupies my entire mind, no other thoughts come or go, just fear and panic crashing over in wave after wave. It’s completely exhausting. I often think when I’m writing these posts that those of you reading who are lucky enough to not have suffered mental illness must think these are exaggerated accounts that should be taken with a pinch of salt. I can assure you that not only is that not true, these descriptions only really scratch the surface of the things your brain can make you think and feel when it’s gripped by mental illness. It’s all-consuming and terrifying and what makes it even worse is the fact that this assault is being orchestrated by your own brain and yet you’re completely powerless to stop it. It grips you like a vice, pinning you to the spot and squeezing the life out of you and yet no one around you can see it, they can’t see why you’re struggling for air, or understand why tears are pricking in your eyes, or you’ve come over in a cold sweat. Nothing outwardly in your surroundings has changed and yet for you the fear has enveloped you and it’s all you can perceive. And for days now, weeks in fact, that’s been my near-daily experience.
When I’m feeling so unwell now, it’s hard not to look back, to look at where this began, to think back to when I knew there was a problem and plucked up the courage to ask for help, only to be fobbed off, dismissed and belittled. It breaks my heart to think of the 16-year-old sat shaking in her doctor’s surgery wondering if she’d gone mad and being so scared of what was happening in her head that she risked being forced into hospital which was what she was sure was going to happen. She had unscarred skin, she ate healthily and had good self-esteem, she just felt sad all the time and didn’t know how to cope anymore. I wish someone had realised something was wrong and rather than pretending everything was fine, listened to her, held her hand and helped lead her back to the light. I shouldn’t have needed to self-harm, I shouldn’t have needed to develop an eating disorder and I shouldn’t have needed to plan how and when I might end my life because it should never have got so unbearable that I even considered those things. For all of these reasons and so many more we desperately need to fund children’s mental health services, increase awareness of what to look out for and have quick and efficient assessment and treatment services to rescue those who veer off the path, so that mentally ill children no longer have to become mentally ill adults. I wasn’t destined to be like this, but my fate was sealed when mental health services tried to prove me wrong and talk me out of being mentally ill when I knew I had every reason to feel the ways I was feeling and had no skills to deal with it. Until we overhaul these systems, we’ll continue to have hundreds if not thousands more follow the well-trodden path from mentally ill child to mentally ill adult and what a complete and utter travesty and waste that would be. During this Children’s Mental Health Week I’d ask those of you who have children or who work with them to read about mental illness in children, to look up the signs and symptoms that something is wrong and to find out what to do in those circumstances, so that you’re prepared! Mental illness was much less known about when I became ill and it was barely mentioned in relation to children so no one around me had any idea what to do but things could’ve been so different if they’d known how to help. You can be that change and you could help stop a mentally ill child from becoming a mentally ill adult.
I wrote this post for parents – 10 Ways to Help Your Mentally Ill Child; and this post about my experiences of being excluded from school – Excluded For Being Mentally Ill.
Earlier this year, I was sent a letter by my psychiatrist stating that it had been 2 years since our last contact and asking me to update him about how I’m doing and whether they can provide any help. I struggled with this. 2 years is a long time, especially when you hadn’t realised it had been that long and trying to put down in words how I’m doing, how I’ve changed in 24 months, has been really difficult and something that actually made me quite anxious. This might surprise many of you because I blog and vlog about it (albeit not very regularly) but those are done on my terms, they’re about topics that are important to me, at a time that suits me, when it feels right. And often, I take months or even years to hone posts and finally share them with the world. I had originally planned to write the letter the same week I had received his but somehow weeks went by and after writing two thirds of it I just drew a blank. Much as I’m always open and honest, I don’t think on a day-to-day basis about how I am. It’s a running joke with my Nana and close friends that I really have to think properly when they ask me how I am because I’m so used to either saying I’m fine or people not even asking. Seeing how I am in black and white, in polarised terms about improvement and deterioration isn’t easy and having to face the fact that I expected to be back at work and well by now, or at least well on my way there, has been really hard. I had no intention of showing this letter to anyone other than my psychiatrist, and Joe, who I got to proof read it and check it was accurate. It was Joe who suggested I should share it here. I’ve been quite reluctant and despite getting him to take it in to my psychiatrist a few days ago, I’ve just had the Word document sat open on my laptop, not quite ready to post and not quite ready to close it and file it away. It’s nearly 1am and for whatever reason, I’ve finally decided to bite the bullet, to listen and trust in Joe’s wisdom and share this here now. In some ways I think it makes me sound worse than I am but Joe thinks the opposite, that depending on what people focus on in my words, it may well give a less accurate picture and sound like I’m better than I am so hopefully you’ll read it just as it is, the good and the bad, without giving one more weight than the other. I often think that I’m so used to this now, so used to being ill, that I can no longer give an accurate picture, no longer compare to “normal”, or life before these conditions because the memory of that is so faded and distant. Hopefully it’ll give you a bit of a picture of how I am now though and another snapshot into my life.
Dear Psychiatrist,
Thank you for your recent letter. Sadly, there isn’t a lot to report in terms of progress or improvement. When I wrote to you 2 years ago, I fully expected to be well on my way to recovery by now but that hasn’t been the case. Having now been ill with these conditions for over 4 years, I’m starting to notice patterns of improvement and deterioration though I seem to have little to no control over these. Certain times of year are worse for me due to increased external demands and I struggle greatly when under pressure or when demands are placed on me. Having said that, I’m doing well at maintaining a mostly positive mood and keeping my depression at bay. I do my best to keep busy and keep my mind occupied with productive tasks so I get a sense of achievement and satisfaction. I do a lot of creative activities including baking, crochet and adult colouring. I am also doing what I can to help others suffering from mental illness and run two blogs and more recently a YouTube channel where I am constantly pushing my boundaries in order to create content to raise awareness, increase understanding and decrease stigma. I remain motivated and hopeful of recovery.
I am also a carer for my Grandad who has Alzheimer’s and go as regularly as I can to my grandparents’ house nearby to look after him. Despite them living in their house for my whole life and me visiting on a weekly basis, my anxiety about doing this has not lessened. For periods it seems to ease up and then comes back with a vengeance and I can identify no reasons for either the positive or negative changes. Currently, I’m feeling more capable and confident whilst at their house and am worrying for less time beforehand and it’s not as severe which is a welcome improvement. I don’t know why this has changed and sadly in the past this has always been temporary but I’m enjoying it while it lasts and trying to maintain and improve my abilities as much as possible whilst not getting my hopes up too high that this will last this time. My IBS has been exacerbated by the anxiety and fairly regularly leaves me unable to leave the flat even when I feel mentally capable of doing so. Last January, I bought a new camera and took up photography. This has been a great tool for helping me stay outside and remaining calm for longer because it provides a great focus and distraction and also requires concentration to get good shots. There are times when I can go out for hours taking photographs with Joe or my mum but it doesn’t get easier and has no consistency; almost every time feels like the first time when I’m trying to get out of my front door. I know the research says that practice makes perfect, that systematic desensitisation will work but that really isn’t my experience though I do still persevere and fight as hard as I can to do as much as possible as often as I can.
The focus of my anxiety seems to periodically shift with one aspect easing up while another gets worse so as soon as I seem to learn a strategy to reduce one lot of anxieties, another lot pops up. For the last year, I have struggled less with being outside in people-free areas thanks to doing photography but I’ve become increasingly anxious about health, getting ill and getting food poisoning. My eating habits have changed, I’m much more cautious about what I eat and have a huge fear of being around anyone exhibiting any symptoms of illness, even a cold. It’s exhausting trying to keep up with the constant changes and having to explain these to others while not even understanding them myself.
In terms of help, if there’s anything I can be offered either in my home or remotely then I’d really like to know. I stopped the therapy I was having via Skype over 18 months ago as it really wasn’t helping and I was making no progress so I’m now dealing with this pretty much alone apart from the support from a dwindling number of relatives and friends. I’m doing a very good job of getting through each day, albeit with a huge amount of difficulty and discomfort but I’m not improving, just changing and trying to adapt to each change. My Support Worker still visits occasionally and I really appreciate those visits and very much look forward to them, I really hope they can continue. Although I’m not improving, having a professional to talk to and check in with and also have a link back into psychiatric services when I’m well enough again to attend appointments is really important to me. If you have any suggestions of things I could be doing to help myself improve then I would appreciate them, I am nowhere near well enough to attend group therapy or any kind of appointments, as I mentioned before, I still struggle every time to visit my grandparents at set times and any kind of deadline or time pressure causes me overwhelming anxiety and increased IBS symptoms and attacks, but if there are any self-help tips or resources I should be made aware of then I would really like to know.
Just to make you aware, my GP has now left my surgery and I don’t know who I’m under the care of now, I’ve not met any of the doctors currently practising there. I do not want to be discharged back to their care and wish to remain under yours so that I don’t have to go through the lengthy waiting list process again when I’m eventually well enough to attend appointments and engage with services. I know you’ve not suggested discharging me, I just wanted to make it very clear that my wishes are to remain within your services.
Kind regards,
Lucy
October the 10th was World Mental Health Day and this year’s theme was dignity. I originally thought this didn’t apply to my situation because I am, mostly, dignified whilst being ill and treated with dignity, or so I thought. I started this post by looking up the definition which I found to be as follows:
Dignity – The state or quality of being worthy of honour or respect.
As soon as I read that, I realised that I was wrong – while I may behave in a dignified manner, I’ve certainly not always been treated in a dignified way and have often not felt worthy of honour or respect because of the way I’ve been behaved towards.
Dignity is something that is often overlooked when treating people with mental health problems and we are often not given the respect we deserve. Sadly, this behaviour is often directed towards us by the very people who we have sought help from, who are trained to deal with our conditions and who we are reliant upon to offer or refer us for treatment. Is it any wonder then that it takes most people such a long time to even go to their GP when they suspect they may be mentally ill? Stigma is still rife within our society and while it is improving and openly stigmatic behaviour is starting to reduce, there is still a really long way to go and unfortunately, nowhere is this more necessary than within the medical community.
My experience of seeking treatment has been very varied and it’s often a very lengthy process. Even when I’ve gone to my GP about physical problems, I’m often disbelieved or it’s assumed that my symptoms are psychosomatic or even made up – all because I have a mental illness. I’m regularly talked down to, patronised and treated with condescension and this has very much put me off doctors and seeking help unless I really have to because I simply don’t have the energy to fight for someone, who should be understanding and sympathetic, to even believe me. Couple with this, the responses I’ve had from doctors when attempting to get a diagnosis or treatment for my mental illnesses and we’ve got one hell of a problem.
A month before I turned 16, circumstances in my life led to me feeling incredibly sad and low and unable to cope anymore, pretty much over night. Mental illness was not something that had featured in my life up until that point – none of my relatives or friends were ill to my knowledge and my only experience was that of over-hyped and dramatized portrayals in the media of violent offenders and people muttering to themselves and rocking whilst strapped into straight-jackets in padded cells. So when I started feeling low and it didn’t go away, I didn’t know what to do. I thought people would think I was silly and that I should just be able to cheer myself up because nothing terrible had happened, no one had died, I hadn’t been attacked, things were just going wrong at home. Eventually, after 2 months of never feeling better, I finally plucked up the courage to go to the doctors. I thought I was going to get sectioned or medicated but I didn’t know what else to do and the thoughts I was having were starting to scare me. I explained to my GP what was wrong and that this wasn’t normal for me. After 10 minutes she told me that it was “January Blues” and “every teenager in the country is feeling like this at the moment”. I said to her at the time that there would be a lot of suicides if that were the case but I was sent home and she did nothing. Two months later I went back, I’d started self-harming and was feeling suicidal every day, she took one look at me and referred me to the Child and Adolescent Mental Health Service because I was very ill and needed help. The first doctor I met there was great, he treated me like a person and was very respectful and understanding about how bad I was feeling and that something needed to be done about it. I wasn’t so lucky with any of the other staff I met there. I was allocated a nurse who I saw once a week who spoke to me like a child and contradicted me every time I said I was feeling worse. I was put on medication more than once and never monitored properly and then told off and admonished when I took myself off it because it was making me suicidal and I felt unsafe. I felt like a naughty child, not a 16-year-old who clearly knew their own mind and felt in danger.
Fast forward to 18 months ago and dignity was thrown out the window by my new GP who decided that telling me to “try harder” whilst dealing with crippling side effects from medications that were later described by a psychiatrist as “virtually poisoning you”, was the best way forward. I practically had to beg her to even refer me to a psychiatrist despite having a history of medication-resistant depression because she felt that I didn’t need one and she was doing a “perfectly good job of treating me herself”. Eventually she conceded and I was able to see a psychiatrist. This has been a good and bad experience. I’ve been lied to, fobbed off, ignored, disbelieved and dismissed. At points I’ve been spoken to like the knowledgeable, well-educated adult that I am who is well aware of the limitations of the NHS and who has studied, worked in and experienced as a patient, the mental health services in this country. But that has been rare. Instead of treating me with dignity and respect, most decisions about my treatment are made without me, often without my knowledge and my very character is often questioned when it’s assumed that my conditions simply can’t be as bad as I’m describing. I highly doubt cancer patients are treated like this when vomiting because of chemo or dealing with hair loss – are they told by doctors to just “try harder” or “stop focusing on the negative thoughts”? I think not! So why am I? Why am I dismissed and treated with so little respect?
It’s clear that many doctors have never been mentally ill, and they’re very lucky. But for those of us that are, it’s hard enough trying to deal with the conditions we have and the things that go hand-in-hand with that like low self-esteem and self-worth without having to deal with doctors judging us, accusing us of faking it, exaggerating, or causing it ourselves. It’s so hard to pluck up the courage to even go to the GP and admit that there’s a problem that you can no longer cope with or hide, without fearing how they might react to you. In an ideal world, we would all be treated as human beings, with dignity and respect, regardless of what symptoms or conditions we have. But currently, this isn’t the case. Something has got to change. Medical professionals, especially those that don’t work in frontline mental health services, are vastly ill-equipped and under-trained to deal with mental illness and instead of seeing people like me as people who are ill, they just seem to see us as walking labels. They still seem to have hugely stigmatic beliefs about us being in control of our conditions and able to just “snap out of it” or “pull ourselves together” and we’re treated accordingly, with disdain, coldness and even aggression sometimes.
First and foremost I’m a human being. After that, I’m many many things – I’m Lucy, I’m female, I’m 24 years old, I’m kind and caring, I’m creative, I’m a great friend. I’m also mentally ill but I’m not those conditions. I’m not anxiety, I’m not depression – I have those, but I’m not them. I am a human being and that entitles me to be treated with dignity and respect, regardless of what conditions I might have. The sooner I’m viewed as a person rather than a list of symptoms, the sooner I’ll be viewed as someone who is suffering and should be treated with dignity rather than a problem that needs to fixed or made to “see sense”. I might be mentally ill but I’m not mad, I don’t lie, I don’t make things up, I’m completely rational. If I say I’m ill, if I say I’m suffering then I’m not trying to gain another label or diagnosis for fun – I don’t get points for it, they certainly don’t convert to prizes. The only reason I seek diagnosis is in the vain hope that it might lead to treatment. Being spoken to in such a dismissive way has stopped me seeking help for most of my conditions and has had a major impact on my self-esteem because it makes me feel less of a person to have a doctor questioning me and treating me with so little respect.
Finally, while I’ve focused on the medical profession within this post, they are certainly not the only people that have not treated me with the dignity and respect I deserve. As you’ll have read in previous blog posts, I’ve been treated disrespectfully by a whole host of people throughout my time as an ill person and this has got to change. You can be that change. Next time you’re talking to someone who’s mentally ill, really listen to what they’re saying, don’t try to fix it, dismiss it, or make them see the positive – just listen. Then think about how you would want someone to respond if you’d just said all of that and were feeling that way. Chances are, you’d just want to be acknowledged, to be accepted and to feel heard. Most of all, you’d want to be treated with Dignity and Respect – you’d want to be Treated Like a Human Being. Be that change today!
N.B – A huge thanks goes to Steve “Squidoodle” Turner for his amazing Breast Cancer Awareness Ribbon Colouring Page which I coloured in green for Mental Health Awareness. If you’d like to get a copy to colour yourself, he’s generously offered it as a free download on his Facebook Page which can be found here. Enjoy and help raise awareness!
Yesterday, my boyfriend and I went to see my new psychiatrist after not being seen by one since September because mine left and I never got put onto anyone else’s books. We were told we were attending to finally discuss diagnosis and I went hoping that would happen and I’d finally get a straight answer about treatment. Luckily, this psychiatrist is very thorough and seems to actually care. I met him once when I was 18 and liked him then as he was honest enough to tell me that because I’ve tried the main effective medications for my conditions with very negative effects to my health, I have medication-resistant depression and there was little to no point in trying those types of meds again in the future (sadly this information didn’t get back to my GP so when I originally became anxious I had to try taking these types of meds again before she’d try me on any new groups). The appointment was incredibly challenging. As usual, we were seen late and it turned out that slot had been triple-booked (I despair at the organisational skills of these places sometimes). I spent the entire assessment on the edge of a panic attack and cried twice because it was so overwhelming despite having taken diazepam in order to even get out of my flat to attend. I managed to get my points across though and have a tentative set of diagnoses that will be confirmed by letter within a fortnight. As a psychology graduate, I already had a fair idea that I’d be diagnosed with Generalised Anxiety Disorder as I fit all of the diagnostic criteria and have just about every symptom listed in the DSM (Diagnostic and Statistical Manual – used for diagnosing psychiatric conditions). What I wasn’t expecting was to be diagnosed with Social Anxiety and Panic as well. I always thought Social Anxiety was extreme shyness and an inability to be around people or to socialise. It turns out, it’s not that simple and that actually I fit very neatly into that box thanks to my fear of judgement from others and excessive worry about failing to meet others’ expectations or letting them down in some way (more posts in the future about this I’m sure).
I also got a big shock when personality disorders were mentioned. I have, at times, wondered if I had a personality disorder because many people with as many stress-related conditions as I’m racking up do have one. I’ve looked at the diagnostic criteria and got friends from my degree course to look as well and none of us think I fit the criteria so I really started to panic when the psychiatrist started to mention it because sadly, a diagnosis of a personality disorder leads to a great deal of stigmatisation, particularly within the medical community. Having worked with 10’s if not 100’s of patients with them, I’ve heard countless stories from them saying their doctors simply don’t believe them when they state that their conditions have worsened, they put all symptoms down to the personality disorder instead of looking at whether they have a second, third, or fourth diagnosis that needs to be made and they’re often labelled as manipulative hypochondriacs. Luckily, my psychiatrist agreed that these diagnoses of personality disorders are often very unhelpful and that in my case this would be true and I don’t fit into the criteria to be diagnosed with one because essentially I’m not severe enough. I was very relieved about this. He said, instead, that I can be described as having Adult Sequelae (seemingly not a diagnosis but a description hence the half in the title of this post). I’ve never heard of this at work or at Uni and when googling it, there is very little information, particularly for lay-people, just journal articles investigating links into drug addiction and alcohol abuse. However, how the psychiatrist explained it and what I’ve gleaned from the few studies that described it, is that issues from a difficult childhood or a pre-existing condition cause a second (or more) condition to develop as a result of the first. Because I had issues growing up, my ability to deal with stress has not developed and has left me very vulnerable to any future stress or adversity. I then develop physical or psychological conditions because of this lack of ability to cope and when I then learn to manage each condition but still not the underlying stress, I then develop a new symptom or condition each time I’m under severe stress or pressure again. It’s essentially like turning on a garden hose that has a hole in it. The water is the stress and the hole is a symptom/condition. I keep patching up the holes but then the hose bursts somewhere else (a new symptom/condition). I never manage to learn to turn off the water or re-route it somewhere else so I spend my life patching up the holes and learning to manage new symptoms and conditions without ever learning how to deal with stress or the issues from my childhood. This isn’t as severe as a personality disorder because seemingly, all of the other aspects of my personality are fully developed but my ability to deal with the negative events of my childhood and negative events that happen in my life today is still not formed. The psychiatrist has explained that I need to deal with the current issues of the anxiety disorders so I can get back to functioning and then work on learning how to deal with stress generally and combat the problems I’ve had since childhood. This means I’m going to be having a lot more therapy over the next few years and he did point out that while there is no reason to suggest I won’t improve, recovery is a much harder battle and one I’ve not yet won with any of my conditions as all those I’ve been diagnosed with still affect me to varying degrees despite my management of them.
Leading on from all of that, I’ve also finally had my treatment plan outlined! I’m to be allocated a support worker who will visit me at home and work on practical things to get me going out more. If/when that improves I will then be enrolled onto a group CBT programme at the local day hospital which I will attend with the support worker. After that, I may well be enrolled to attend the local recovery college where I will be taught about the conditions I have, how they work and what can be done to manage them. I’m not sure how much use that part will be given that I already have a psychology degree where I extensively studied these conditions and have not only worked for a total of 11 months with patients with these conditions but have also heavily researched them since becoming unwell myself but if I get well enough to attend then I’m certainly willing to give it a go to see what it’s all about and whether there’s anything new and useful I can pick up. After all of that, my level of functioning is meant to be a lot higher and I will then be assessed by a psychotherapist who will advise me about what long-term therapy I need to have and I’ll hopefully be referred to a highly skilled therapist from there for treatment which is likely to need to last 12-18 months.
So, I now have three and a half shiny new diagnoses and I’m still in shock about it all. I was so worried that I was going to be fobbed off again without knowing what’s wrong with me and what’s caused my life to turn upside down for the last 15 months. I’m pleased I now know officially what’s wrong with me, that I’m being offered treatment and now have a plan of what’s going to be offered and what we’re trying to tackle first, but naturally, now the worry is setting in about the pressure I’m likely to be under to improve, to constantly be getting better without being able to get used to any slight increases in functioning (there will be a lot of these in between being virtually housebound now and having a normal life where I can work and socialise). I’m worried about how I’m going to cope with a support worker when that’s the job role I was in when I became too ill to work, whether I’m going to get on with them, whether my treatment will be done at my pace or a pace set for me that I don’t get to have input into and a whole heap of other worries. The nature of Generalised Anxiety Disorder is that you worry about everything, particularly the unknown, so this is all very scary. I now have some labels that roughly describe what’s wrong with me and what I’m going through but I currently have no idea how long it may take to improve my functioning or even if the treatment plan will help. It sounds like the psychiatrist expects it to help but then he kept saying “if” so I don’t actually know what the likelihood is or what time-scale we’re looking at. I’m trying to just stay calm and take each step as it comes but such is the nature of the beast that I’m fighting that this is nigh on impossible for me to do and I’m already worrying about what if all of that doesn’t work and I’m left housebound still with another treatment option crossed off the list as not having worked. I’ll certainly be giving it my best shot and anyone that knows me offline will know how motivated and determined I am when I set my mind to something but the worries are still ever present. At least I know what conditions it is I’m fighting and have an action plan to try. Beyond that I’m just having to hope, and wait and see! Updates will follow as and when there are any. I’m still shocked and stunned that I’ve waited 15 months for one diagnosis and then three and a half came all at once.
Today I’m feeling anxious, I have been feeling increasingly so for the last couple of weeks because tomorrow I have an assessment with a psychologist. I was originally meant to have the assessment in December but wasn’t well enough to attend and moved it to the end of January hoping that I’d have improved by then. Sadly, it got cancelled with 3 days’ notice by the psychologist because she was striking that day. It got postponed again until after I’d finished withdrawing from my medication and hopefully improved. It’s now tomorrow. In some ways I have improved – I cope better when I have to travel in cars, I can go to the shops a little more often and stay out a little bit longer before the panic sets in, occasionally I even go out and don’t feel panicky at all. However, I feel incredibly anxious about tomorrow.
I’ve been fighting for this assessment since September and was originally deemed “unsuitable” but was never told why. I fought and explained why I should be assessed for therapy and stated that as medication clearly doesn’t work, psychological therapy was my only hope other than spontaneous recovery which we can hardly rely on happening. Eventually my psychiatrist gave in, seemingly because he could no longer justify saying no and I was sent an appointment.
They keep refusing to do my assessments by phone even though I’ve already missed one face-to-face appointment because I got so anxious that I couldn’t move and they keep telling me to “just try” and “keep pushing yourself”. I push myself every day. I have almost no support from the health services now and was really unwell for months due to withdrawal from my medication which wasn’t monitored because I still don’t have a new psychiatrist. I’ve now not been seen by a doctor since the 3rd of September and am still yet to be allocated one – it’s been 7 months.
When you’re suspected of being diabetic doctors don’t just make you eat sugar in front of them and then pump you full of insulin when it’s clear that your body isn’t processing it and is rapidly killing itself. Why then must I keep “pushing myself” to go to appointments so that they can see “just how anxious I am”. Why am I essentially being tested? Most of what I say and do currently seems to be skewed by doctors and psychologists who just use it in whatever way they like to back up their own point. I’ve attended 3 appointments so I was well enough to get to those, why not the latest appointment? I explain that I’m so anxious about these appointments that I stop being able to sleep for a week beforehand and my IBS flares up. These appointments are making me more ill but I’m expected to attend them in order to get treatment. I have to go to assessment after assessment with healthcare professionals with different job roles and titles and so far all I’ve been offered is Group CBT sessions. I regularly go weeks at a time without being able to set foot outside my front door so how is it feasible to expect me to do this? Asking me to “just go outside” is like asking someone with a broken leg to walk on it with no plaster cast. They can want it as much as they like but as soon as they try to put weight on it the pain will be unimaginable and their leg will buckle potentially causing more damage. Wanting your bones to fuse together doesn’t mean that it happens and it’s exactly the same with my anxiety. I hope, wish and even pray every day that I will be able to go out and do all of the normal things that I took for granted but that doesn’t make me any more able to do them than walking on a broken leg.
Patients having a lump investigated are told what the possible outcomes and diagnoses may be and in time are told what treatments may be available to them. They are given a diagnosis as quickly as possible and then told about treatments, prognosis and available support. They are not kept in the dark about these things and are allowed to make decisions about what they feel would help them best and how they want to proceed. I’m afforded none of these luxuries as a mental health patient. Over a year in I’m still yet to be diagnosed, I’m still having to go to assessments and have still not received any psychological treatment. I’ve taken myself off the medication that was making me worse because I have no doctor to discuss it with or to advise my withdrawal so I did it alone. I have been in and out of the mental health system since I was 16, I have a psychology degree and until a year ago I worked in a psychiatric inpatient unit. I know my stuff when it comes to what therapies are available and whether or not they’re likely to help me. I’ve had so much CBT that I could almost certainly deliver low-level therapy with no need for further qualifications and while it’s a great therapy, it hasn’t worked for me and there’s no reason to think that would be any different for this anxiety disorder.
In 2011 I received Cognitive Analytic Therapy which really helped me at the time and is the therapy that I believe in most to be able to treat my current difficulties. I have been asking my psychiatrist since September to refer me for CAT and have been categorically told that it IS offered by my local NHS Trust and within my area so I fought for it for 5 months. I’ve asked more than one health professional on numerous occasions whether it’s offered here and whether the therapy assessments I’m going to are assessing me for CAT or just CBT and have always been told that they are. That was until January when I phoned the day hospital and the person I spoke to immediately said that the Trust DO NOT offer CAT. I was shocked at this and nearly burst into tears. I told her that both my psychiatrist and psychologist had assured me that it was and that I was being assessed for it so she said she’d check. The psychologist then called and finally admitted that CAT is offered by the Trust but that there are no NHS funded therapists in our area and due to my condition preventing me from travelling, I would not be being assessed for it.
I’m now in a very difficult position where I’ve been lied to by the very people that I’m meant to trust. I have to open up to these people about my deepest darkest fears and tell them about all aspects of my personal life. I’m meant to trust in them to tell me the truth and to work for my best interests and to advocate for me when discussing my treatment in meetings. But they’ve lied. They’ve lied over and over again, when I’ve asked them direct questions about whether or not I’m being assessed for this therapy. It feels like I’m being conned. How am I meant to persuade myself to go to an assessment that I’m terrified of attending when it looks increasingly likely that I’m just going to be offered Group CBT or sent back to my GP. I keep asking what provisions there are for people who are housebound and I’m still yet to get an answer. I have explicitly stated that I do not want to be discharged back to my GP, the same GP who put me on medication that I should never have been given in the first place due to previous bad reactions to it and who told me to “just stick with it” and more worryingly to “try harder” and “think more positively” while I deteriorated thanks to the horrendous side effects. If I can’t attend tomorrow though I may well be discharged back to their “care” meaning I won’t get any treatment.
I know that I’m one of the unlucky ones for whom medication is not the answer, or even part of the answer. I know that I’m a nightmare patient because my conditions are treatment-resistant and complex but I wish they’d been straight with me and not lied. If CAT isn’t offered in my area and I’m not well enough to travel out of area for it then that’s fine. I don’t like it but it’s not unreasonable and I understand that particularly in this economic climate there are limitations on healthcare provision. I’ve directly asked over and over again and been assured that I was being assessed for it. I’m left wondering what would have happened if I’d been well enough to attend the original assessment? Would I have been told I was “unsuitable” for CAT despite being suitable for it when I was assessed in 2011 by a different NHS Trust? Would they have just tried to palm me off with Group CBT and then said that I was “refusing treatment” when I declined due to not being well enough to attend? Would they have ‘fessed up and said that actually they’d got me there under false pretences and that CAT isn’t offered? I’ll never know.
I am not alone in being treated in a sneaky, underhanded way. Countless patients with mental health problems are treated like this every day. It simply wouldn’t be allowed if I had a physical condition. I wouldn’t get put on medication without a diagnosis. I wouldn’t have to prove myself, my tests results would speak for themselves. You may be thinking that you can’t test for mental illness and biologically that’s currently true. I can’t have a blood test and be diagnosed with an anxiety disorder but there are countless psychometric tests that measure anxiety levels, depression scores and every other psychological condition under the sun and my score on the anxiety tests is through the roof. There is no mistaking or denying that I’m severely affected and that my quality of life is hugely diminished by this condition and the test results show that. And yet, I’m still expected to prove it by attending the appointments and for some reason, unknown to me, not being able to attend an appointment because I’m so anxious that I’m not able to move, doesn’t prove that I’m even more ill than they thought and therefore in need of urgent treatment. No, my inability to attend appointments just seems to elicit threats of being discharged back to my GP and receiving comments about not trying hard enough or putting in enough effort. This would be a disgrace if I were physically ill but it’s widely accepted when mentally ill – You Should be Outraged!
N.B I’ll post soon about whether I manage to attend tomorrow and what the outcome is.
This time 371 days ago I was interviewing for a job that I’d been trying to get for 9 months. It was a permanent role on the ward that I loved working on and meant that I would finally have job security, guaranteed hours, proper support and training.
370 days ago I was on top of the world after being offered the job. I was in work that day and the patients and staff were all thrilled for me and very excited that I was officially joining the team. I was filled with pride and excitement that I’d finally got to where I wanted to be and was one step closer to my dream career of Clinical Psychologist.
369 days ago and things weren’t as rosy. I felt strange all day. I was worrying a lot and felt a lot less confident in my ability to do my job and keep my patients safe. I started to doubt myself a lot and felt very insecure. In the evening I went out for a meal with my boyfriend to celebrate my new job and I deteriorated over the course of the meal. I couldn’t stop worrying and felt really on edge. I didn’t want to walk anywhere, even to the loo, because I felt like I was going to collapse and like everyone was watching me. On our journey home I was clinging to him and when a drunk sat opposite us on the train I could barely hold it together. I just couldn’t deal with it all. I burst into tears the minute we got through our front door and struggled to sleep that night because of all the worries going through my head.
The next day, 368 days ago, I got up for work and just felt paralysed by fear. I tried to work through it and make myself go in knowing that I’m obviously good at my job if I’d just been offered a permanent role but the fear took over and I had the first panic attack of what would soon be many and had to phone in sick.
Over the weekend I deteriorated further. I needed to do a food shop and simply couldn’t face doing it on the Saturday. I don’t remember the exact thought processes but I just felt unable to cope and unable to deal with that many people and pressures and how busy the supermarket would be. On Sunday I felt that if I didn’t go that day then I’d end up stuck indoors and frightened to leave. I don’t know why I thought that but it was a very strong feeling and I knew I had to try. It was awful, the train ride there despite only being 6 minutes felt like a lifetime and the shop was really busy. I got the bare minimum that we needed and more than once I almost abandoned my basket because I felt so anxious. The only thing that stopped me was the worry of what people would think if I just left it. I cried the whole way home and got stared at a lot by other passengers on the train who couldn’t understand why I was sobbing surrounded by shopping bags.
365 days ago I went to the doctors. It’s a 2 minute walk around the corner from where I live and I had to force myself to go because being outside was now terrifying. The noise, the brightness, the people. Everything was just overwhelming. I cried as soon as I started talking and was immediately prescribed medication and signed off sick for 2 weeks while I waited for the worst of the side effects to wear off and for the drugs to kick in. I haven’t returned to work since. The drugs didn’t work, the side effects never wore off. Neither did the following two medications.
I’ve been medication-free for just over a month and am still no closer to returning to work and my level of functioning has barely changed. I’m less physically ill now I’m finally drug-free but the anxiety is not shifting. I now realise that a huge amount of why I was feeling so bad was because of the side effects of the medications I was on rather than the condition itself. This has been very difficult to come to terms with – to know that for 11 of the last 12 months I’ve been made worse by the very thing that was supposed to be making me better. I still don’t have a diagnosis, I haven’t had a new psychiatrist allocated since mine left in October and I’m still not receiving any psychological therapy on the NHS. I’ve just been left to deal with this condition that has no name on my own.
Now my reality is that everyday mundane tasks are completely terrifying. I think back over things I’ve done in the past, things that were huge achievements like my degree, getting the job, moving into university miles away from home and it feels like a completely different person did those things. I think back to all of the small things I used to think nothing of doing like popping to the shops, going on the train to Brighton for the day, visiting my mum on the Isle of Wight, taking the bins out. Now, just thinking about those things makes me feel sick and tense. I can’t fathom how I was able to do them when I’m so frightened of everything now.
My existence is almost solely contained within the walls of my flat and my world has shrunk to be unimaginably small. The person I once was is (I hope) hiding, but it feels like she’s gone. All of the things I’ve done in the past, the small things right up to the huge things don’t seem to count towards my confidence because I can no longer associate with them because they no longer feel like something I did. I’m now the girl who’s scared of her own thoughts, who’s surrounded by wool and spends her days watching tv, crocheting and cleaning. I don’t even recognise the girl with the psychology degree who was going to change the world.
So here I am, one year on. One year and a week ago the world was my oyster and I felt excited about the future, my career, the lives I would try to help change. Now my world mostly consists of fear and distraction from fear. I’m not excited about the future, I’m fearful of it, I don’t know what my future will hold and it’s currently unknown whether I’ll get better, stay like this, or get worse. The biggest thing I have going for me though is that I’m determined, more determined than most and I fight, despite feeling weaker than I thought it possible to feel. I don’t give up and I carry on hoping. I try not to set time-limited goals because I fear failing and feeling even worse, so instead, I hope and I aim for things without setting a time limit. My hope is that my future will be normal, quite uneventful and that I’ll be able to recover, not relapse, and be able to help others because I truly believe that’s what I was put on this planet for. My aim is to get better and to stay well, to decrease stigma, to increase awareness and understanding of mental illness and most of all, to no longer be afraid to go outside and do normal things. Here’s hoping that one year on from now this will all just feel like a bad dream and I’ll be well, working and helping people, if that’s not doable then I just hope that I’ll be better than I am now and I’ll be able to look back and see the improvement. One whole year of fear has been exhausting and this has been one of the longest years of my life. I’m not sure I can face another year like this but at least I’m facing it medication-free and with a few really supportive people around me who cheer me on no matter how small the victory and cheer me up when the condition gets the better of me. Maybe this coming year can be One Year of a Little Less Fear!
For a few months I’ve been considering coming off my medication (Pregabalin) because I’m experiencing so many side effects and few, if any, positive effects. I’ve given it a good go having been on it since the 21st of June. I’ve increased to a level where I should definitely be feeling calmer and less anxious but I’m not and instead I’m experiencing a heap of physical side effects including, but not exhaustively: dizziness, sedation, nausea, agitation, inability to get to sleep, inability to stay asleep, visual hallucinations, slurring, poor concentration, poor memory, tiredness, disturbed vision, disorientation, weight gain, feeling drunk, increased appetite, anxiety and low mood.
After speaking to a pharmacist friend, my mum, boyfriend, and two best friends, I decided to come off the Pregabalin. Normally I would do this under the care and supervision of a doctor but this is not currently possible because: 1. My GP barely knows me and refused to put me on Pregabalin when I requested it; 2. I’ve not been seen by a psychiatrist since the 3rd of September and haven’t had any contact with him since the 29th of October; and 3. My psychiatrist has now left and I’m still yet to be allocated a new one. Consequently, I’m doctor-free and feel like I need to take matters into my own hands.
So, that brings us up to the 28th of December when I decided enough was enough and I needed to bite the bullet and start reducing. I was on 225mg a day and I will reduce by 25mg per week as long as I don’t feel too horrendous. Today is day 10 and as of Sunday (4th) I’m down to 175mg a day. I don’t feel horrendous but I’m certainly not feeling well. I feel sick for hours after my evening meal and am often close to vomiting, I’ve got terrible tummy ache and have had a constant headache for 5 days. I feel dizzy and am suffering from visual hallucinations in the form of objects moving and seeing insects/spiders running across the floor in my peripheral vision. I’m also now feeling more anxious, paranoid and on edge, particularly at night, which is preventing me from sleeping and when I do sleep I’m having weird dreams and nightmares. I get feverish throughout the day and often feel boiling or freezing or each half of my body will be doing different things. It’s not a lot of fun.
On top of all of that, I’m trying to keep myself busy and occupied but it’s proving increasingly challenging because my concentration and memory are really poor and I often struggle to plan or make decisions. Today was a good day and I was able to go to my grandparents’ and help them with some things. I really enjoyed it and was amazed at how well I coped with it all when yesterday I had to have help ordering a Tesco food delivery because I couldn’t work out what food we needed or concentrate for long enough to do the order on my own (I’ve since updated it at least 6 times with things I’d previously forgotten to order). I find it really hard to be this useless and unable to do so many tasks that I would have found so easy when well. I used to do all of our food shopping and meal planning and we never ran out of anything because I would always stock up. Now I need help with all of that and my boyfriend has to help me plan meals and write down what I’ll eat and remind me to defrost stuff because I just forget or can’t work out what to make. I’m not like this every day but I’m affected like this more than 50% of the time and it’s not the withdrawal that’s causing it, it seems to be the anxiety disorder itself because I’ve been like this now for months. I need so much help from people, so much guidance, advice and support. I don’t feel like me, not the real me. I have to have help with planning things, prioritising, organising my day, starting tasks, continuing tasks, working out how to tidy things, even what to wear some days. All of these things that I can’t do or need help with just make me feel useless and worthless. I can’t work but I should at least be able to be one amazing housewife with a spotless flat and wonderful home-cooked meals. As it stands, I don’t even know where to start with cleaning and most days I simply don’t have the energy thanks to the medication and now the withdrawal.
People wonder why mentally ill people don’t like taking medication or come off it as soon as they’re well despite knowing it’s the medication that’s keeping them that way but it’s almost always because of the side effects. Most mood stabilisers cause weight gain which is no good for your self-esteem or your physical health. Many anti-psychotics cause slurring, dribbling, slowing of movement and thoughts and other very noticeable side effects. Anti-depressants often make you feel worse before they make you better and even increase suicidal thoughts and tendencies. Is it any wonder that we’re so resistant to taking medication when the drugs that are meant to make us better often leave us with debilitating side effects?! When I first started to feel anxious and realised that I wasn’t coping I went to my GP and begged for drugs because I had no idea how to stay calm. I went on medication 3 days after I first phoned in sick at work and have been on medication for the last 9.5 months for all but 10 days since then. All three medications have made me really really unwell and never touched my anxiety. By March I will be drug-free and attempting to overcome this anxiety disorder on my own and on my own terms without having to deal with medication side effects. However, I no longer have the hope to hold onto that there is a drug out there that will help me and increase my functioning. My psychiatrist was very clear that this would be the last drug he’d put me on and that if this didn’t work then I’d have to be medication-free. That’s the biggest reason I’ve stayed on it for so long because I just kept hoping that one day I’d wake up and it would be making me calmer. That day hasn’t come. I already have physical health problems that mean I often don’t feel “well” each day but these drugs have made me feel terrible and so the only way forward is to come off them. The withdrawal is likely to get worse as my body craves the substance more with each week that I’m reducing it but I’m determined to be off it so that I can just battle the anxiety disorder rather than the list of physical side effects on top of it. I’ll keep you all posted on how it goes but suffice to say that medication withdrawal is a bitch!
I’ve adapted and added to this letter which I originally gave to my psychiatrist at the end of October. It’s now more up to date, strongly worded and passionate than the original and thus more in keeping with my thoughts and feelings about my treatment and care.
Dear Psychiatrist,
I would like to clarify a few things. I had marginally improved before our last appointment but not even enough to be able to leave my home more than once a week. I have not improved at all since then. At no point during this period of illness have I improved enough to even consider a month to go back to work let alone implying (as you stated in our last phone call) I’d thought of a start date to return to my position as a Healthcare Assistant on an acute psychiatric ward. When I recover enough to consider working, I will only do so part-time and I will be looking for less stressful positions in retail or offices until I get back to functioning fully. Given that it is still a major struggle for me to leave my home to attend appointments, I don’t think that returning to work will even be a consideration for a number of months.
In future, if I am deemed unsuitable for services that I have been told I will be referred to I would like to be informed of this immediately rather than waiting until the next appointment which could be some weeks or even months away. If treating me is an issue because I am an employee of the NHS Trust then I would like this to be discussed with me. I deserve to have all of the treatment options that any other patient would be offered and if these may cause problems for my future employment then I would like to discuss this rather than not even being informed and having critical decisions about my treatment made without me even knowing.
I would like to be treated with some urgency rather than taking little steps and seeing what happens. As you will have read in my notes and I have said in our appointments, medication does not work well for me. The Pregabalin is reducing some of the intense panic that I often experience and I feel calmer at home but I’m still not able to leave the flat when I would like and am feeling increasingly trapped by this. I am also suffering a huge number of side effects that do not wear off after each dose increase and this is also majorly impacting upon my functioning. I am trying privately funded psychotherapy however, this does not waive my right to therapy on the NHS which I requested in September. 8.5 months is a very long time to be feeling this unwell and money worries due to my inability to work are becoming increasingly severe. I am no longer able to “live life to the full” I’m merely surviving and getting through each day in the hope that I will get better. However, this hope is fast running out as medication options seem to have been exhausted and the only therapy I’ve been offered is group CBT which I can’t possibly attend. I’ve been told by every psychiatrist and psychologist that I’ve seen that I’m not a “typical” patient so surely I need to be given different treatment from typical patients.
Angry doesn’t even cover how I’m currently feeling. I hardly even know how to express what’s going through my mind. I feel so let down and hurt and knowing that the service that’s meant to help me no longer seems to think that’s possible, is very difficult to handle. I keep trying to hold on, to keep hoping and believing that I’ll get better but that’s fast running out. I want to make it very clear that how my life is at the moment is not ok and I’m doing everything in my power to get well but it’s not working. I have little to look forward to and am lonely and unhappy which along with not being able to do all the normal things I was used to is exacerbating my depression which I would like to remind you is not treatable with medication and so I have to take a huge amount of care to keep it under control. I really need proper therapy that will deal with the issues underlying my depression and now anxiety. I am very aware of what a lot of these issues are but I need a trained therapist to teach me how to deal with them because working through them on my own has proved unsuccessful.
I’ve worked in mental health and I know all too well about the pressures staff are under and the effect that governmental cuts are having. However, I’m ill and I deserve treatment, not to be fobbed off with appointments being eked out by spacing them further and further apart and assessments being delayed because I’m deemed “unsuitable” with no explanation of how or why I’ve been given that label. Why do I never get consulted, informed or even explained to about the decisions that are being made about my care? Why is it not discussed with me? Why do so many meetings get held about me where a group of strangers make crucial decisions about my care having never met me, based on the opinions of one man who seems incapable of advocating my best interests? Why do I not feel listened to or heard but rather pacified, silenced and ignored?
I truly hope that this letter will get across to you the severity of my condition and its effect on my life and that following this I’ll be consulted more about my care and offered suitable treatment so that I can finally get my life back and go back to helping others like me. I’ve wanted to work in Mental Healthcare for the last 7 years and desperately want to make a difference but at the moment I can barely leave the house so how can I do that? Please give me the treatment I need so that I can become a success story and not another in a long line of people let down or denied treatment by the NHS. You can help change my life.
From Lucy.
In The Midst Of Madness 