Dear Psychiatrist – July 2018

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

Letter to Myself 10 Years Ago – Age 27 and a Half

Today I was reminded about a post suggestion I followed a couple of years ago to write 50 words to yourself 10 years ago. 50 words is nothing like enough now but I wondered how different that might look, 2 years on. I realised that 10 years ago I was in the midst of severe depression and very very ill so here’s my letter to Lucy of 10 years ago.

Dear Lucy,

You’re 17 and a half. For some reason the halves and quarters have always mattered to you. In fact, you recently described yourself as 27 and a half so it’s not something you’ll grow out of. You’re currently in hospital. You asked to go. You didn’t feel able to keep yourself safe anymore. You’re not sure at the moment if it was the right thing for you to do but I can tell you from the future that it’s one of the best decisions you ever made. You’ll meet some of the best, kindest, most normal people there. You’re still friends with some of them now. You’ll decide on a new career direction while you’re there, you’ll have a poignant conversation with some other patients and realise that your passion lies in helping people and the fire will be ignited in you that, 10 years on, is burning stronger and brighter than ever to make a difference to the lives of people with mental illness. I probably should have started this with a spoiler alert, I guess I’m wrecking all of the surprises. Sorry!

You’re struggling so much right now. You’re in so much pain. It does get better, I promise. But I know that right now it just feels like the worst thing ever and you’re wishing with everything in you that it would all just go away. You feel so alone, so misunderstood, so attacked and hurt by people around you. Some of that gets easier. You’re not alone in the future and you aren’t alone now. Let people in. Try to spend less time worrying about what other people think, I know it matters so much to you but it’s eating you up inside. Later this month you’ll be asked to create a “positive box” by the hospital, you’ll think it’s silly and you’ll only be able to write two positive things about yourself when you start but just watch what happens next, watch all of the patients and staff around you take time to write you messages, make you things, draw you pictures and give you gifts to put in your box so that it’s so full it almost won’t close. It’ll bring you so much comfort over the coming decade and it’s still kept safe now and is a treasured possession.

Listen to the staff. They care about you, even though you sometimes don’t realise it. They’re trying to help you. Eat the food. You’ve had an eating disorder for too long. You’re restricting yourself so much as punishment because you feel you don’t deserve nice things. It’s not true, you do! You’re so kind and caring, you put everyone else first, always, please stop punishing yourself with restricting food and self-harming. Spoiler alert again, this will get better, I can’t say if it’s permanent or not but right now, you’re a healthy weight, you no longer have a distorted body image and you haven’t self-harmed in years. The scars you’re so ashamed of currently are no longer something you feel embarrassed about or have to cover up. You’re happy to wear t-shirts and short-sleeved stuff and despite the scars on your leg that you’ll create when you’re 22, you still wear a bikini and finally realise how fabulous you look in it!

In 6 months you’ll start embarking on romantic relationships. It’s safe to say that these are not successful and some are still a source of embarrassment and shame. I won’t tell you what to do or not do, you wouldn’t listen. You need to go through all of that to realise what you want in life, to realise how you shouldn’t be treated and to eventually realise what you’re worth. Try to make sensible choices and stay true to yourself. Try not to regret anything. Take it from me, your “accidental anal” story will become legendary and the chlamydia test debacle will put more than a few of your friends at ease that their experience can’t possibly be more embarrassing than your own. All of these things make you an even better friend and when you get to my age I think you’ll be really proud of the friend you’ve been and still are.

I know you’re really struggling to stay alive right now. Even 10 years on I can still feel that ache in your chest, that desperation to find any small reason to stay alive, to not spend all of your time planning a way out that won’t involve causing yourself pain or hurt those around you. I know you think you want to die right now but years later you’ll realise that’s not true. You don’t want to die. You want to stop hurting. I don’t know how it happens, I can’t even pinpoint when, but gradually that pain does lessen. Gradually, you stop wishing for death. Get through each moment, each day, I promise you it will get better and you’ll never believe how good it is to not feel that weight on you all day every day.

You’re currently being told by a lot of people that you’re selfish. Deep down you know that’s not true but it’ll take a long while for that to sink in. Tell yourself every day that you’re not. It might just save you some heartache and might keep you more confident. You will realise eventually that you’re not selfish and you’re not self-absorbed either. The people telling you that are angry and they don’t understand your illnesses and so they’re lashing out in the hope that they can snap you out of it. You know it won’t work, eventually they realise that too, but right now it’s going to hurt like hell and you’ll spend way too many hours crying til you can’t see anymore and wishing even harder to disappear from the world. You won’t always feel that way and even though life at 27 and a half is a challenge that I wouldn’t even consider telling you about now, you’ll be helping people, you’ll be making a difference and no one will have called you selfish for a really long time.

You’re hearing voices and that’s ok. It’s terrifying and it’s something that you tell almost no one about because you’re convinced that you’re schizophrenic and you’ll get sectioned but it will be ok. You won’t get sectioned. You don’t have schizophrenia. And although you do get some worried reactions from people, no one leaves you because of it. You’re going to start hallucinating soon. You may have already started. It makes you feel like you’re going mad, like your mind is out to get you. It gets easier. You get used to it and it does stop, at least for the most part. Again, I don’t know when the voices stop, not for a while now but eventually they will and they certainly quieten and lessen over time. You’ll learn to over-power them, to drown them out or tell them they’re wrong. You’ll stop seeing hideous versions of your own suicide. The only hallucinations you’re left with in a decade are of bugs and those are only occasional and when you’re particularly tired. Quick tip – when that happens, go to bed, it’s a sign you’ve been up for way too long! You won’t be scared of it anymore and it isn’t anything sinister no matter how much it feels like it must be right now. You won’t believe this but it’ll actually help you with your future work, all of these experiences will help you be an awesome nursing assistant and they’ll help you to relate to patients and be understanding and empathetic. When you’re working in the future you’ll actually consider being grateful for these experiences because by then you’ll have learnt so much from them. I know that sounds crazy right now but trust me, you’ll get here.

I’m so sorry you’re going through this right now. I wish I could make it better, take the pain away, give you the map of how to navigate your way through it. The truth is that I have no idea how we get from you to me. If I could do anything to make this easier, I would. You’re feeling so alone, so hurt and so suicidal right now and you’re going through one of the toughest periods of life that we ever do but you will get through it, you’ll make amazing friends, you’ll choose a fascinating, worthwhile career path, you’ll do a degree that will make you meet even more fantastic friends and even the man you hope to marry one day. There will be some dreadful periods, times when you can’t see the light, when you won’t even want to try and look for it. But you’ll keep fighting, you’ll keep driving yourself forwards because that’s what you’re doing right now and by 10 years later you’ve got even better at picking yourself up, dusting yourself off and striving forwards to get what you want.

Take care of yourself, be proud of yourself and try not to fear the future, it’s terrifying, even worse than you’re imagining, but it’s amazing too and you’ll get here.

Love you,

Lucy (age 27 and a half) xxx

50 Words to My 15-Year-Old Self

A while ago, I read something online that asked what 50 words would you say to your 10 year younger self. I thought about this and thought about what age I was then, and what was going on in my life at the time. This coming December will be 10 years since I got depression – a whole decade, that’s a long time. In some ways it feels like a whole lifetime but I can still remember, as if it were yesterday, the days leading up to it where I felt happy and like I was managing, the events that triggered it to develop pretty much over night, and the all-consuming feeling that I woke up with the next day, and for countless days afterwards, that I could no longer cope. It was like the life and joy had just been sucked out of me and I was left, gasping for air, clutching at hope and feeling the most intensely bad things I’ve ever felt. I didn’t feel able to cope, I no longer wanted to live, I could see no other way out and I was scared of myself, of all of the horrible things I was thinking and of all of the bad things I felt I was capable of, not least of which was ending my own life. So, 10 years on, with more diagnoses than I care to remember and having gone through more suffering than I like to admit, this is what I’d say to the 15 year-old me. This is not what I’d say to a person with depression, or any other mental illness, it’s not what I would want someone to say to me now but, with the benefit of hindsight and with 10 years of experience under my belt, it’s what I would say to myself aged just 15 – sad, scared and suicidal.

You will be OK. You will suffer and it will feel unbearable. But you will bear it and you will come out stronger. You will fight harder than you realise is possible. But you are strong, you are a fighter and you will survive! Keep fighting. Keep going. Keep strong!

What would you say to yourself 10 years ago? What would you have needed to hear? I doubt that it would’ve have helped me 10 years ago to hear this, I doubt I’d have listened or believed it because the feelings were so all-consuming at the time but it’s what I feel like I needed to know, even if it would have just given me a glimmer of hope, that I was in such desperate need of at the time. I now try to tell myself these words every day. I don’t believe a word of it, but I know others do, and I know it’s what I need to hear and hold on to. I’ve got through nearly 10 years of depression, I can get through another few years of anxiety disorders too, I just have to keep fighting, keep going and keep strong!

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

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

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

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

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

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

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

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

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

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

Fighting An Invisible Fight

Living with an invisible illness is like living in an invisible prison. No one can see the bars, the shackles, the chains and so they forget. They see you do the “normal” things that you’re capable of doing and then wonder why you can’t do the rest. Why you don’t do the rest. They think you choose not to do those things or that you’re not putting in enough effort. That if only you would try a bit harder then you’d realise you can do all of those normal things that are so natural for the healthy world to do. They don’t see the prison walls around you, the confines in which you live. They have no idea of the price you must pay or the pain you must go through to function. They try to cheer you up with encouragement and positive comments but these often just isolate you further as you realise just how little people understand about your imprisonment. They know little of the torture you endure as you battle your body, your mind, just to complete simple tasks that they don’t even think about. There’s so little comprehension of the hours spent worrying, planning, trying to appear as normal as possible – to function as best you can. You experience judgement, accusation, disbelief. You’re challenged, questioned, pushed, even interrogated and threatened. Then their frustration starts and turns into nasty comments and digs. You’re told you’re not trying hard enough, you don’t want it enough, you don’t put in enough effort, you’re too negative. You hear helpful suggestions like “think positive”, “smile more” and “if you believe you can do it then you will”. I grew up hearing this from all angles for year upon year and it caused me so much pain. Almost more pain than the condition I was trying to live with every day (ME). I couldn’t understand why people didn’t believe me, why they couldn’t see from my pasty complexion and dark circles under my eyes that I wasn’t well and that I needed to be listened to and understood, not pushed and made to “see sense”. These comments from so many sources have now caused me untold damage. From what my psychiatrist and numerous therapists over the years have told me, I now have secondary mental health conditions because I absorbed all of those comments – all of the misunderstanding and disbelief and turned it in on myself. I couldn’t comprehend how people that knew me so well could possibly think those things of me and be so wrong. The more people said it to me, the more I started questioning if I was mad, if they were right and I was making it up, enjoying it and seeking attention. Deep down, I knew I wasn’t, but when you’re 11 years old and countless adults and children around you are all accusing you of the same thing, you really start to believe it and question yourself.

Having illnesses that are invisible means that I’m entirely reliant on trust. You have to trust that I’m telling you the truth about my condition and I have to trust that you believe me. I can’t show you the exhaustion from the ME, the muscle pain, the headaches, the constant nausea. I can’t show you the difficulty I experience in dragging myself out of bed every day, when my depression constantly tells me there’s no point and that I’m worthless and useless and might as well be dead. I can’t show you the intestinal spasms that my IBS causes that make me wince and even double up in pain. You might think I’m being dramatic when my face contorts mid-conversation in response to the intense pain of what can only be described as feeling like my guts are wringing themselves out. But I’m not. I’m simply unable to hold up the “healthy” façade when there’s that much pain inside me.

Anxiety is invisible, it takes over like a parasite. It robs you of rationality and replaces it with constant worrying about ridiculous things that you know would never happen and yet still you can’t stop the obsessing going on in your head. Anxiety makes you fear everything. Things that were always fine and easy to do, suddenly become scary No one else can see or hear the terrifying voices in your head. They can’t hear the constant worrying, the constant stream of thoughts that you can’t do it and you can’t cope. They can’t see the effort you put in all day every day, just to get through 24 hours without a panic attack. Getting out of bed each day is a battle because in bed you’re safe, you can’t fail, you can’t let anyone down. But you also can’t achieve. You can’t succeed. You can’t thrive. You can’t effectively live. So you drag yourself out of bed and face the day and all of its challenges. You keep on top of your racing thoughts as much as you can and you force yourself to be productive and do things you need to do. But one small glitch, one badly worded email, one rejection for a review, one slight perceived criticism and the walls come crumbling down and you’re left trying to pick up the pieces. Again. You build yourself back up again, you plaster back together your already shattered self-esteem, you try to ignore it and not make it mean anything about you. You try to move on, to not mind, to not let it matter. You try to distract yourself knowing full well that most of the time when this happens, the whole day is ruined because you simply don’t have the energy that’s been sapped from holding it together all that time, to be able to stick yourself back together again. So you just count down the hours until you can go to bed and hope that will give you some respite and that tonight you won’t be plagued with nightmares or panic attacks and that tomorrow will be a better day. This fragility means you’re constantly at the mercy of anything negative that manages to seep its way into your life. When you have an anxiety disorder your resilience is almost non-existent. Things that you’d normally take in your stride, suddenly floor you. You get phased by everything. A simple request (when you’re well) becomes an unbelievably mammoth task that requires hours of questioning, wondering, planning and worrying. These are not things we choose to do, they’re the things that our anxious brain decides we must do, especially at night when we’re desperately trying to sleep.

I know I’m strong, I know I don’t feel it but experience tells me that I am, but that doesn’t make it any easier to get through the battles I fight every day to have even the slightest bit of normality. I don’t know how to “snap out of this”, if I did, I would have, a LONG time ago. But instead I have to muddle through each day trying to work out what works and what doesn’t, trying to deal with the fact that fluctuating conditions mean that my ability to do things changes on a daily, if not hourly, basis and just trying to keep up with that is exhausting. So many people seem to assume that once I’ve done something once, it’s easier, but the truth is that it’s not. I know that’s hard to hear, I know it isn’t convenient but it truthfully isn’t easier after the first time of doing something, often not even after the 5^th or sometimes 10^th. Just because I did something yesterday doesn’t mean that I can do it today. I may still be suffering from doing it yesterday or I may simply not be in a place mentally to do it again. Please realise, it’s not simply a case of putting my shoes on and walking out the door when I want to go out – the demons in my head fight back with a vengeance and more often than not they win.

Living with an illness that isn’t visible is a blessing and a curse. You can’t see I’m ill, or see that I’m suffering. I can hide it, act, pretend to be well. I can cover it up and look “normal” as if nothing is going on inside. But it means you can forget – you don’t realise I’m fighting, can’t see what my needs are and don’t notice when I deteriorate. You don’t see what I’m dealing with which makes this battle incredibly lonely and isolating. So next time you see me, or anyone else with an invisible illness, please realise that almost all of our energy is spent in an invisible battle and that despite what you might see or believe, we’re Fighting An Invisible Fight.

You Wait 15 months for One Diagnosis and then Three and a Half Come Along at Once.

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.

Physical Illness vs. Mental Illness – Why You Should be Outraged

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 3^rd 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.

Dear Psychiatrist

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.

Afraid Of Everything – Life With An Anxiety Disorder

I’ve currently got an anxiety disorder and have been virtually housebound with it for the last 8 months. Most people aren’t sure what anxiety disorders are like and many think that they’re about something. Some anxiety disorders including phobias are about something but many, like mine, are not. This is my attempt to explain what generalised anxiety feels like and how it develops.

Anxiety feels like you’re drowning in a sea that no one else can see or help you out of. It feels like you’re being strangled and can’t get enough air into your lungs to breathe. You feel scared. More scared than you’ve ever felt. Most of the time you don’t even know why or what you’re scared of. And yet you are. And it eats you up inside.

Anxiety is like a creeper around a tree. It starts off slowly growing alongside it and before you know it it’s stifling it, preventing it from growing, moving and eventually stopping it from living. Anxiety slowly creeps into your life through worry about little things, and then bigger things. This worry then becomes obsessive and less controllable. It stops being about a specific area of your life and spreads throughout your life. It keeps growing and growing until it takes over your life. Then it starts squeezing out the spontaneity, the ability to adapt and cope with change. You end up unable to cope with strangers, unfamiliar places, or new situations. You struggle to make phone calls, leave the house, or remember things. You get anxious about making mistakes or regretting things which makes decision-making a nightmare. You can’t plan or think straight because all of your thoughts become plagued with worry and you spend days feeling anxious about an upcoming event that when well you’d have taken in your stride. Your life gets reduced down to very limited “safe” activities and situations and your thoughts are so anxious you no longer feel like yourself. You struggle to explain why or how you got this way because by this point the anxiety has taken over so much that you’ve almost forgotten what it felt like not to be anxious and you think back over events in your past and wonder how on earth you accomplished them. Your life revolves around fear and the life you once knew seems to be gone.

At some point the panic comes. Panic is like everything I’ve already described but ten times more intense. Panic feels like your life is being threatened right here, right now. It feels like the worst thing you could possibly imagine is imminently going to happen and you’re powerless to stop it. Occasionally you end up feeling so panicky that you lose control. Panic attacks are awful but when you lose control during one, it’s so much worse. You can barely speak or breathe because you’re hyperventilating so much. You can’t be reasoned with because you’re no longer rational due to being so frightened. You can’t keep still because then the “bad” thing might happen but there’s so much adrenaline coursing through your system that you can’t stand or walk or even sit. This has happened to me five times in my life and during most of those I had to be restrained by people because I was so out of control. I have little memory of these events other than how I felt and you truly couldn’t feel more frightened, it’s as if a gun is pointed at you. Afterwards, once your brain has decided to realise that the threat doesn’t exist, you feel totally exhausted and very embarrassed. You have to apologise to the witnesses who you’ve just traumatised who were on the verge of phoning an ambulance or the police. As soon as this has happened to you once you’re always aware that it could happen again and every anxiety-provoking situation becomes more so because you fear losing control again and perhaps being hospitalised. Fear feeds fear and the cycle continues.

Anxiety robs you of rationality. It steals your freedom, your courage. You feel incapable of doing anything new because it feels so intensely threatening. The rational part of you is still there fighting, knowing that no real threat exists and yet every day you’re thwarted by mundane tasks because they threaten your very existence. Living every day like this is completely exhausting. The anxiety even eats into your sleep, keeping you up for hours at night and then warping your dreams into worrying and fearful situations so that waking up is almost a relief until you realise that you have another anxiety-filled day ahead of you. Anxiety doesn’t let up. It doesn’t ease off when you’re having a particularly bad day. On those days it ramps up the intensity so that bad days are almost unbearable and you feel scared of just about everything. Anxious thoughts can’t be switched off and they’re often impossible to be distracted from and so you’re scared and worried and anxious until your brain forgets what it’s scared of and anxious about and maybe you’ll get some relief by focusing on something normal for a while. But sometimes your brain just keeps you feeling anxious, even though you no longer remember why and so you can’t rationalise it or even explain it to anyone else because it no longer makes sense and it just is. You’re no longer anxious about something, you’re just anxious. And so it goes on…. and on…. and on.

I truly hope that this conveys some of what those of us with anxiety disorders are going through. For those of you that may have underestimated what it’s like and think we just worry a bit more than usual, I hope that this has brought some clarity and will make you think again. Those of you that have suggested we “are not being rational”, “need to try harder”, “should be giving it a go” or “should just go outside more”, I hope you realise how unhelpful these comments are and that what you’re asking us to do is nigh on impossible when we’re feeling such intense fear and panic. Maybe if you walked a day in our shoes you’d see why the idea of going food shopping makes us cry, or why we have to work ourselves up to calling our GP, or why we’re tired all the time and can’t always string coherent sentences together when our minds are racing with anxiety and never letting up. Instead, why not offer to visit us and brighten our afternoon, send a card so we know we’re thought about or give us a call to see how we’re doing? We’re often out of sight because we’re being tortured by these thoughts but it’s such a shame that we’re so often out of your minds too. I hope this will have given you enough of a glimpse into our lives to see that we’re battling the anxiety every day and it’s not a fight we always win but we do always try.

So now you know, Life With An Anxiety Disorder can mean being Afraid Of Everything and often not even knowing why.

What Do You Do When The NHS Gives Up On You?

I’ve had ME for 14.5 years, depression for 8 years and an anxiety disorder for nearly 8 months. The NHS are currently in the process of giving up on treating me for the third time. I’d love to say this is a one off. That I’m the only person this has happened to. But, alas, I cannot because that would be a great big fat lie! The more I talk to people with the same or similar conditions to me, the more stories I hear of professionals just giving up on them and no longer offering treatment. Here’s my story of how they’ve given up on me.

The first time I was given up on started when I was 9 when I came down with a terrible cold that was verging on flu in its severity. I never fully recovered from it. I was ill and off school for a couple of months with no energy, headaches, tummy aches and lack of concentration. I went to the doctors but no one knew what was wrong. I had blood tests for coeliac disease and glandular fever, my thyroid was tested, my iron levels were checked, but all of my tests came back clear. I went back to school and functioned normally again and a few months later I was left with no energy, unable to attend school or do much at all. I was a keen ballet dancer but after an hour’s class I was left barely able to move for the next few days and no one had a clue why. I was sent to a paediatrician who sent me for a psychiatric evaluation to see if I was making it up or had a somatic disorder but after an hour of questioning I was deemed to be telling the truth and having physical symptoms that no one could explain. This all went on for a year until I was finally sent to a specialist in London. He diagnosed me with ME/CFS and that was that. We were informed that there was no cure, no reliable treatment, and nothing really that they could advise other than pace myself or I’d continue to relapse and could relapse to the point of being bedridden or even hospitalised. After that I was sent home and told to get in touch with a couple of ME/CFS charities and basically to hope for the best.

Periodically over the years since then I’ve been back to the doctors about various symptoms caused by the ME and every now and again I got sent to a paediatrician or an occupational therapist or a psychologist (to be assessed again because they thought my low attendance at school was because I was school phobic) but I’ve never had any actual treatment and was just told to do my best to manage the condition. The NHS recommends Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET), though these are highly controversial within the ME/CFS community, but I was never offered these and the closest I ever got was my paediatrician spending 10 minutes drawing a diagram of a staircase and explaining that I needed to become completely able to do the set level of exercise on one step before I made a very small increase to the next and so on or I’d relapse. After the age of 13 I was just left to get on with it, I was practically wheelchair-bound for three years but only got seen by doctors when I needed medical letters as evidence for exam arrangements at school, college and uni. They never even attempted to treat me or any of my symptoms after that.

The second time was years later. I got depression two and a half weeks before my 16^th birthday. After a battle with my GP I was referred to CAMHS and put straight on antidepressants with no offer of therapy. I spent the next year deteriorating whilst seeing a specialist nurse weekly or fortnightly and told that I was getting better each week despite getting worse. The medication didn’t help so they put me on a new one and just left me on it for 4 weeks with no check-up or warning that it might make me worse or even suicidal. Those 4 weeks were terrible and made me significantly worse and intensely suicidal. I stopped taking the drugs and got in a lot of trouble with family and my nurse and doctor because I hadn’t done as I was told but I honestly don’t know that I’d still be here if I had continued taking them. They completely altered my mind!

As you may have read in my previous blog post “Mental Illness – The Next Generation”, I then got treatment privately both as an inpatient for 9 weeks and then an outpatient for a few months. Funding ran out and I still needed treatment so I went back to the NHS and got sent to the Adult Services as I was now 18. I was assessed and told I could have Group CBT for 6 weeks. I gave that a go but as I was so much younger than all of the other group members it wasn’t suitable and the group leader said that it wouldn’t help me. I went back for assessment and was told I could have 6 sessions of individual CBT. Bearing in mind I’d spent 9 weeks having intensive group CBT 5 days a week for 9 weeks which hadn’t fixed the problem, this didn’t seem like a helpful option. I was then assessed by another psychiatrist for medication and he said that now I’d tried 5 different antidepressants and found none to be helpful and two that made me much worse, there was very little they could do as I had medication-resistant depression. I was then discharged and told to do my best to keep my negative thoughts at bay and eat well and exercise regularly (well-known cures for depression…. Wait, no they’re not!).

So that was the second time the NHS gave up on me which brings us up to now. Seemingly they’ve exhausted all of the options that they’re prepared to try and I’m now pretty much being left to it. I’ve been reliably informed by my psychiatrist that most patients with anxiety disorders “get themselves better eventually” however, I’ve been given no time frame and the only advice he left me with was to keep pushing and challenging myself. I’d like to point out here that I’ve been doing this for the last 7 months with very little effect.

I knew as soon as I started feeling anxious that I needed treatment and quickly. Something felt terribly wrong and I sensed that I wouldn’t be able to pull myself out of it so after having a terrible panic attack before work on Friday 21^st March and struggling to function over that weekend I got an appointment with my GP on the Monday knowing full well that I needed medication. I worked as a nursing assistant at a local psychiatric inpatient unit and am also a psychology graduate so I’m well versed in the medications on offer and the treatments that do and don’t have an effect. My GP offered me Citalopram or Sertraline, both are SSRI anti-depressants, both are drugs I’ve been on before, both made me very ill when I was previously prescribed them. Citalopram made me physically unwell and side effects included stomach ache, vomiting and sedation. Sertraline massively increased my suicidal ideation so much so that I was no longer able to guarantee my own safety and I came off it. I stated these facts to my GP and asked to be prescribed a different drug that I’d not been on before given that I’d only been on 5 out of a list of over 60! I was told that those were my only two options because they’re first-line treatments and so I went with Citalopram. 6 weeks down the line and I was pretty much housebound and suffering terrible side effects that weren’t going away so I was switched to another drug which was even worse. I’ll do another blog post in the future that goes more in depth into the world of antidepressant medication.

Anyway, after begging my GP to refer me to a psychiatrist and her almost refusing because she didn’t think I needed one, I was finally sent to see one and I thought that I was going to get better. He was shocked that my GP had kept me on the medication I was on and said that the drug was “basically poisoning” me and started reducing it straight away and then put me on Pregabalin, an anti-anxiety drug. Since then not a lot has changed. I’m less physically unwell but am still having side effects that dramatically affect my daily functioning. I’ve asked and asked for therapy and was told that I’d finally be sent for an assessment but my psychiatrist has informed me that the therapy I need is very rarely offered because of funding issues and that they’ll almost certainly say no. There has been no mention of any change in medication because there’s nothing else they think will help and all I’m being offered is a 6-week course of Group CBT. I have to take diazepam (valium) in order to get to my psychiatry appointments because I’m so terrified of leaving my flat and last time I missed my appointment because I was having such a severe panic attack that I couldn’t walk or move let alone leave the flat. Going out and sitting on my own in a strange room with complete strangers and talking about anxiety is pretty much as anxiety-provoking as it gets for me at the moment and given that CBT hasn’t helped me in the past, it’s really not an appropriate option. I’ve explained this at every appointment and during every phone call with my psychiatrist because he suggests it every time he’s in contact with me and yet that’s the only option they’re giving me. I should be getting an appointment through for next month which I was told was to be assessed for individual therapy but I’ve now found out that the Group Treatment Programme Service are going to be there too so it’ll be their last–ditch attempt to persuade me to do Group CBT. Following this, they’ll almost certainly discharge me because they’ll spin it that I’m refusing treatment rather than the actual reason which is that they’re not offering me any treatment that I’m well enough to attend. I’m not deemed a good bet for giving therapy to because I’ve not been “cured” by it in the past and I was outright told that the allocation process is based on who is most likely to improve the quickest and that’s clearly not going to be me. I’ll keep you all posted on the outcome of the assessment in December that I’m desperately hoping medication will enable me to attend, but it’s not looking hopeful. Given just how many times my psychiatrist reiterated that most patients with anxiety disorders get themselves better, it’s clear that this is what he’s expecting will happen as he doesn’t think I’m going to be offered any further treatment.

All I’m left wondering is What Do You Do When The NHS Gives Up On You?!