Losing a piece of me

Every time I become ill again, I lose a little piece of me.

As with many mental illnesses, my symptoms are episodic. I am never completely symptom free but the severity changes all the time. With bipolar disorder, I get episodes of depression and mania interspersed with some relatively normal periods. I still have a lot of problems with anxiety all the time but this can sometimes improve and sometimes get worse again.

The problem with having episodes like this, is that I never know what is going to happen and how my moods and behaviour are going to change. Each time an episode hits me, I’m almost shocked that the same thing could be happening all over again. I shouldn’t be. I know that a bipolar diagnosis is a lifetime diagnosis and many mental illnesses are long-term problems. I should be prepared but I never am. 

I have many memories of how I have been when I'm ill.  I know that I have felt extreme despair, frustration, elation, anxiety and agitation. I remember staying in bed all day and recall some of the strange things I did. Surely this should prepare me to some degree for the next episode. But my mind seems to try to protect itself: the worst memories get buried and the other ones feel like a dream.

Maybe mental illness is not the kind of thing that you could be properly prepared for. It’s such a strange thing to feel like you are losing your mind. There is nothing that can quite describe it. I'm still me when I'm ill but I don’t behave the same or feel the same emotions. I feel out of control and I realise that my behaviour and mood may be affecting how other people see me. I feel so strange that it is hard to believe that I haven’t been drugged sometimes. I don’t know why I feel the way that I do when I am ill, but I know that there is nothing I can do to stop it. How could you ever be prepared for this kind of life altering switch to occur?  

Each time I get ill again something happens to me. First, I suddenly feel jolted back to the times when this has happened before and the memories come rushing back. I realise that it is all happening again and I didn’t even notice the warning signs. Then I feel myself letting go, allowing myself to fall in to misery, anxiety or elation. With this comes a certain acceptance that my life is once again going to change forever and there is nothing I can do to stop it.

Every time this happens I lose a part of myself. One of the biggest changes is to my confidence. It keeps getting knocked back and there is not enough time between my periods of being ill for me to regain back any self-esteem that has been lost. I don’t trust myself to behave properly anymore and, because I socially withdraw when I am ill, I forget how to interact with other people. This has lead to all sorts of social anxiety problems.

Also losing your mind has a huge impact on how you view yourself. Your personality can seem to change. For example, when I get depressed I can become very introverted and hostile. When I am manic I can becomes overly exuberant and over the top. Even though I know my basic personality has remained the same it is hard to match these behaviours to my sense of self. I sometimes end up feeling incredibly self-indulgent and guilty all the time. I feel like I should be able to control myself and go back to the steady self that I imagine I used to be.

As each episode of illness hits me, and my confidence and sense of self are eroded, I feel like I have lost this huge part of who I am. I remember being well as a child. I remember being quiet but sociable, being imaginative but grounded and being relatively happy. I know I must still be the same underneath, but so much has changed. Because of my mental illness, some of who I was seems to have been lost forever.

CBT didn't work for me. Why am I made to feel guilty and ashamed?

Cognitive Behavioural Therapy (CBT) is one of the main types of therapy available to those suffering from mental illness. It is supposed to work by changing the way you think and behave in response to external events. You are taught to identify negative thought patterns, weigh up the evidence for these thoughts objectively and come up with more balanced thoughts. By doing this, you are supposed to be able to change the way you feel and behave.

I’ve tried CBT a number of times: twice with two different therapists every week for a year and once in a group for 20 weeks. I definitely think that therapy should be explored and would advise anyone with a mental illness to give it a go. However, with CBT, I found that it didn’t made me feel any better and at times it has actually made me feel worse. I don’t wish to diminish the help it may give to other people, but for myself, I have found it lacking.

When I read about CBT it sounds like it is based on good common sense. Your thoughts, feelings and actions are certainly connected. The idea behind CBT is that by changing one of these (your thoughts) you change the rest. One of the problems I have had with CBT is that my thoughts are so ingrained that they have proved impossible to change. Most thoughts that we have are automatic. We are not always aware of where they come from, they just appear. Changing these is an uphill task. I found it impossible to change these thoughts once they had already ‘lit up’ in my brain. 

CBT teaches you to assess your thoughts and come up with more balanced thoughts. When I did this however, I found that although I could easily come up with the more balanced thoughts, I didn’t really *believe* them. I found myself in the strange situation of having a balanced thought and an ingrained, unbalanced thought fighting with each other in my mind. For me, CBT created a situation where I believed two contradictory things and this caused me quite a lot of stress. The more the negative thought popped up in the brain, the more I punished myself for thinking it and the more stressed I became.

In doing CBT, I was aware of what thoughts were more balanced but it still didn’t change the way I felt or the way I behaved. Perhaps this was due to the cognitive dissonance happening in my brain. Maybe other people are able to hold on to the balanced thought whilst discarding the unbalanced, automatic thought and so their feelings and behaviours change. But for me, this never happened.

One potential problem with CBT is that you don’t know which comes first, the automatic thought or the feeling. CBT seems to be based on the idea that it is the thought which originally causes the feeling which, in turn, causes the behaviour. However, I find that I often feel distressed, depressed or anxious for no good reason and that this then causes me to start having negative thoughts. Changing the thought then won’t necessarily cause a change in the feeling if the causal relation is the other way around. 

One of the difficulties I had with CBT is that I was made to feel guilty for my feelings and behaviours. I kept being told that my unbalanced thoughts were causing my illness and this made me feel ashamed. Thoughts seem like something you should have control over so I was sometimes made to feel like it was my lack of control over my own mind that was leading to my illness. 

It seems to me that it is fairly controversial to say that a certain therapy wasn’t helpful. I found that when I attended CBT, the therapists believed in it so strongly that I wasn’t able to say that I didn’t think it was helping. When I filled in forms before and after therapy that assessed how I was feeling, they made lots of excuses for why I wasn’t feeling better. There was no allowance that CBT may not be effective for everyone.

If you don’t find a certain therapy helpful and express this opinion, you are often treated like you just aren’t trying hard enough. You feel like a failure for not being able to take control of your life and fix your mental health problems. The reality is that I am trying really hard every day. I try and eat healthily, take long baths, go on walks, listen to relaxation CDs and take medications with horrible side effects. I don’t *enjoy* doing any of these things and I am not even sure if any of them are effective but I give them a go because I am told that they work and I want so badly to feel normal. 

CBT may be effective for some people and I am glad that it is available for people to try (although of course many people have to wait months to receive treatment on the NHS and it is often a short course with not enough allocated time). I think that it is good practice to try and become aware of your thoughts and see how they might not be accurate. However, personally as a therapy I found it didn’t help cure my mental illness. In fact I felt guilty and ashamed as a result and was made to feel like I wasn’t trying hard enough. Therapists should always be aware that some therapies don’t suit everyone and that this is no reason to judge someone for not getting better.We are all trying our hardest. No one chooses to be unwell.

Even mental health professionals can display stigmatising attitudes

Lots of people with mental illness experience stigma in their everyday lives. Perhaps your parents think you should be able to pull yourself together and think yourself out of your problem. Perhaps your friends believe that you have control over your illness and could do more to help yourself. If only you would join an exercise class or start eating blueberries or something, everything would get better for you.

I have come to expect these sorts of sentiments from people. Sometimes it comes from a good, albeit misinformed, place. Your loved ones are often just trying to help you with something they don’t understand. This doesn’t make it any easier to hear though when you know that you are trying your hardest and nothing seems to work.

I find myself trying to do the things that people want me to do just so that I can say to them: ‘look I have tried X and I'm doing all I can to try and get better’. Ultimately though, I know that these things won’t magically cure my mental illness. It’s more complex than that. My body has shut down and my behaviours have become strange. A switch has turned off in my brain and it is going to take a lot more than going on a jog to fix things.

Hearing these kinds of things from friends and family is to be expected. Hearing them from professionals though is quite shocking.

I once went to the GP to ask for some diazepam for my anxiety problem. I had been prescribed it by my psychiatrist but I wasn’t seeing him for a while. The GP’s response? ‘You just need to WORK through your anxiety. You shouldn’t rely on medication.’ (tone was very dismissive). I felt like I was being blamed for my illness. If only I would work a little harder, all would be fixed. I was made to feel like I was taking the easy road by taking medication. Of course, if medication is the easy road so be it. I would rather take the easy road and fix the problem than struggle down the path of yoga and raw vegetables alone.*

Maybe you wouldn’t expect a GP to have an in-depth knowledge of mental health problems. However, I would expect that a mental health support worker would have this kind of expertise. I had a very bad experience with my support worker. She forced me to do things I wasn’t ready for, she made me pay for her parking that she claimed back anyway and she asked me to buy her presents on my holiday. What most distressed me though was that she knew that I had bipolar but she didn’t believe it. When she read through my DLA application she was really shocked by the description of some of my behaviours. Her attitude? ‘I have never SEEN you behave like that.’ (strongly accusing tone). Surely as a MH support worker she would be aware that people cover up their problems.

Another time I attended an anxiety and depression group. The woman that ran the group said to us right at the outset: ‘I don’t think that any of you are ill. Mental health problems are down to bad experiences, but you are NOT ill and do NOT need medication.’ Now I am not of the opinion that only medication should be used to treat mental illness. Tools such as relaxation, CBT and mindfulness are all things that may help some people with mental illness. But dismissing the idea that mental illness should be treated with medication is dangerous. Medication helps many people and has been shown to be effective in controlled clinical trials. It is not good practice for a psychologist to dismiss medication just as it is not good practice for a psychiatrist to dismiss psychological treatments. Ultimately  of course it is a patient’s choice what methods of treatment he or she uses.

When a mental health professional says these kinds of things it’s very distressing for the patient. Anyone who has experienced a mental illness knows that they cannot control the illness by will alone. It is not a problem with strength of mind or character. It is not an easy choice to take medication. We have all experienced the side effects and the feeling that you should have been able to control the situation yourself without intervention. The fact that so many professionals have these incorrect assumptions about mental illness is deeply concerning. However, they just reflect the deeply ingrained prejudice of society in general.

A mental health professional has an important relationship with the patient. It is one in which the power dynamic is unequal. The patient is deeply distressed and desperate for help. They are fully reliant on the mental health professional for help. Most professionals are aware of this power imbalance but do everything they can to listen to the patient and advise, not dictate to them possible treatments. However, a significant minority of professionals give poor advice and demonstrate the same prejudices that uninformed members of the public have. This is all the more damaging considering the power imbalance between patient and professional.

Over the past few decades we have come a long way in tackling mental health stigma. This is partly because many professionals have gone out of their way to educate people and remove some of the stigma. I do not wish to negate some of the wonderful work many professionals do. I would not be where I am today without some of the great help I have received. However we must still hold those in power to account. When a professional holds a prejudiced view they need to be challenged, because often it is all the more damaging coming from them than it is coming from your friends and family.

 

 

 

*This is not to dismiss lifestyle changes. My point is that there are many treatments available to us.

How will my friends react to my mental illness?

I wage a constant battle with myself. It all revolves around what my friends will think of me. Should I hide my mental illness from my friends to avoid embarrassment? Or do I drop the mask and allow friends to see me acting abnormally, knowing that some people will be scared and judge me harshly?

Having a mental illness is no fun, but it’s made all the worse by the stigma which surrounds it. We can’t help but be affected by society’s expectations. Everyone cares what other people think of them. The fact is that society judges those with mental illness negatively. 

Often people think that those with mental illness are responsible for their condition. The idea is that those with mental illness are somehow in control of the course of their illness and can choose whether or not to succumb to it. Often it is thought that those that have mental health problems are weak in some way. Perhaps other people suffer from the same problems in life but are of strong enough mind to overcome their difficulties. On this view, whether or not you suffer from a mental illness is all about choice.

Some people may go a step further and think that mental illness doesn’t even exist. You can’t see a mental illness, only observe behaviour. The behaviour can seem strange and scary. It is easier to believe that someone is just ‘crazy’ (a dehumanising word, setting someone apart from yourself and others) rather than imagine that person to be just like you or me but in intense mental pain. Some may just think that the person is behaving this way because they have let themselves go rather than actually suffering from a medical condition. 

These kinds of thoughts often lead people to the belief that those with mental health problems are a drain on the state. They read about ‘benefit scroungers’ in the newspapers and believe that someone with a mental illness is unworthy of help. At best, they are weak and lazy. At worst, they are faking it for monetary gain. Either way they see you as a drain on ‘the taxpayer’.

I worry that my friends will be thinking these kinds of things about me when I talk about my mental illness. I don’t think most of them will think I am making it up, but perhaps they think I am lazy and a drain on the state. I claim disability living allowance but I don’t tell many people that. I am sure they can guess though. Maybe they look at me buy new things or go on holiday and resent me for it. Who knows what kinds of things people are thinking when they look at me. I shouldn’t care. Mental illness is not about weakness or choice. I should just shrug it off. They are the ones with the problem with their ignorant views. I shouldn’t care, but I do.

I try to navigate the tricky path with how to behave around other people so as to minimise these kinds of negative judgements. I want to be open and show people what my mental illness really is all about. I want to tell people about the way that I feel and why I end up behaving as I do. Most of my friends know that I have a mental illness. However, I always end up trying to hide the behaviours associated with it to avoid people thinking I am scary or weird. If I am depressed, I act cheery. If I am anxious, I act much more calmly that I feel. If I am manic, I try exceptionally hard to quash down my desires to pace around and laugh wildly.

I have ended up in the strange situation of being open in what I say about my mental illness but acting as if nothing is wrong. Of course, in doing all this behaviour modification, people are going to have a hard time believing that I am really ill. I may have saved face but people are going to wonder why I can’t work when I seem capable enough in front of them. 

I know that other people with mental health problems must feel the same way. As well as coping with the illness, we have to deal with the stigma surrounding it. This makes it hard to be completely honest and open with people. However, how are people ever going to understand mental health problems if we all keep quiet about it? It is a tough dilemma because when we are open, we sometimes do get judged negatively by people we think of as friends. We can only hope that real friends will at least try and be compassionate, even if they don’t really understand mental illness. 

A day in the life of just one person with mental illness #adayinthelifeMH

A Day in the Life (https://dayinthelifemh.org.uk/) is a project which aims to collect the everyday experiences of people who have mental health problems. The project is collecting accounts from mental health sufferers on four particular dates over the year. What follows below is my entry of what happened on Tuesday 10^th of February 2015. I hope that you can take more time to read the other entries on the project website, coming soon!

My day starts differently to most days. Due to a combination of depressive symptoms and heavily sedating anti-psychotic medication, I usually manage at least twelve hours sleep. However today I am up at 7.30am. The reason for this early start is that my house is getting surveyed and I am too scared to be around whilst a stranger is there. I have a lot of problems with social anxiety, so interacting with a stranger is extremely hard for me. What will I say? What will they think of me?

My plan for today is more or less the plan for every day: My partner drops me off at my parent’s house to spend the day with them. My Dad works from home and my Mum works part time so I have someone with me all the time. I lost a lot of confidence because of the panic attacks I have been having over the past year. I think everything through over and over and panic that all sorts of things may happen. I feel safe with my family and so I am always with them. I just can’t be on my own anymore.

Today was a day that my Mum was off work so we did a few boring things like go shopping for a washing machine. I had to talk to someone at the shop which filled me with dread but I managed ok. I am hoping that as I keep taking small steps to combat my fears, they will eventually go away. We then went for coffee. I have to say that going for coffee with my Mum is (sadly) one of the highlights of the week. When you live life with a mental illness, the smallest things can really make your day. When I visit a coffee shop I can sit in the corner where no one will notice me and watch what goes on around me. Having a coffee feels a little bit special for some reason.

Later on in the day, I start to get excited for no particular reason. I have bipolar disorder and sometimes my moods go all over the place. On this particular day, I feel high for a few minutes and jump up and down laughing but then I crash back into depression just as quickly. I feel tired, lethargic and useless.

I get picked up by my partner in the evening and I manage to make dinner for once. Cooking can be hard when you don’t have any energy or motivation. Luckily I don’t have to do much. We have crispy duck with pancakes and hoisin sauce. All I have to do is chop the veg and put the duck in the oven. It isn’t good for my weight, which has soared since going on the anti-psychotics, but it is so comforting to eat fatty food that I find it hard to care!

My partner goes off to an exercise class in the evening, leaving me at home. The evenings are the hardest for me as they are when I get most anxious and am also most likely to have bipolar symptoms. I am practicing being alone for short periods to try and overcome my fear of being alone. I can feel the panic rise in me but I try and distract myself by looking up things obsessively online. I search all sorts of random things just to keep my mind occupied.

I go to sleep with my partner reading next to me. This is the deal we have made. He reads and looks out for me as I drift off to sleep. I feel safer that way with the light on. Luckily sleep doesn’t often elude me because I am zonked out from the anti-psychotics. As much as I hate the way they make me feel numb, I don’t know how I would survive without them. I fall asleep but my last thoughts as I drift away focus around the fear of dying. As hard as life can be, I desperately want to survive. At least for the moment anyway. 

How anxiety ruined my holiday

Holidays have always been an exciting and relaxing experience for me. My mental illness means that holidays have been especially important. I have no job, no children and a very limited social life. It sometimes seems like I have nothing to look forward to. I have nothing to talk about to people because nothing ever happens to me. I thought going away on holiday would fix this.

With this in mind, my partner and I saved money for ages for a holiday. There were a few doubts I had before I  went about how I was going to cope. Although I have had bipolar disorder for many years now, I had always managed to enjoy holidays in the past. However, it has only been relatively recently that I have suffered from a severe anxiety disorder. 

Having an anxiety disorder is in some (only some) ways more disabling for me than bipolar disorder. With bipolar my symptoms are better at some times than others. I can cope with going away on holiday when I feel better. However, severe anxiety seems to have stayed with me continuously for over a year now. I have had trouble breathing, panic attacks and a crushing feeling on my chest almost every day, sometimes all day. What I should have realised is that these symptoms weren’t just going to go away when I went on holiday. In fact, going on a holiday was likely to make them worse. 

I was really nervous about the flight because having panic attacks has meant that I have a fear of confined social spaces. If I have a panic attack, I need to be somewhere where people won’t see me. I need to be able to escape quickly so as not to embarrass myself. Cinemas, buses, supermarkets and other crowded places are all tricky locations for me. A plane is the worst possible place. People are packed on like sardines and there is no place to escape. I was so focused on this fear of the flight that I almost didn’t go. 

I didn’t have a panic attack on the plane. With the help of alcohol and some (very out of date!) diazepam, I managed the journey. However, I had been so focused on my fear of the flight that I hadn’t properly considered how I would cope with the rest of the holiday. We arrived in the city and I was instantly hit with crippling anxiety. 

We were picked up by the guesthouse at the airport. The first thing I had to deal with was the social anxiety. I had to try and make small talk with the lady that fetched us. She was nice enough but I am so unused to talking to strangers that I just couldn’t speak. I could feel the panic rising in me and was worried that she would notice. When we got to our accommodation we had to walk down this hectic alleyway with scooters flying past and I just felt terrified. I used to find this kind of experience exciting but I was just a nervous wreck. 

The roads were mayhem and I was too scared to cross them. The sights and sounds were so unfamiliar and I just felt completely lost. I basically hid in the hotel room for the next few days only popping out for food. When I did I couldn’t eat properly. I am a big fan of eating so this was quite disconcerting! I felt sick and kept feeling my body trembling. I couldn’t breathe. I thought I was going to pass out. I can’t describe properly how I felt because it was so awful that I seem to have partially blocked out the memory of it. All I remember really was how I felt like I was going to die. I just felt this absolute all-encompassing fear. It was how I would imagine feeling if I was hanging off a cliff edge with a rope that was about to break. It seemed like I had only seconds left to live except that the feeling lasted all day. It was relentless. 

It all came to a head after four days where I just broke down and sobbed on the bed. I knew then that I had to go home. Things weren’t going to get better. The unfamiliar surroundings were too much for me to cope with. We had to fork out a load of money to fly home early. 

I felt terrible. My partner was really upset and I knew that I had ruined the holiday for him. This was supposed to be his dream holiday and because of me he was not going to experience it. I feel so guilty. I can’t bring myself to tell my friends about what happened. I know I have to tell them some time because they will ask how my holiday went. I’m not looking forward to the awkward silence or the negative judgements. I know that many of them will say supportive things but I don’t know what they will actually be thinking. Perhaps I am silly to worry about what they will think but I can’t help it. What people think of me means everything to me. It shouldn’t but it does. 

My parents are there to care for me when my partner is at work. I get panicked if I am left on my own so I rely on them to support me. They decided to go away on holiday at the same time as us because they thought they weren’t needed. Now they know I am at home with only my partner to look after me. They are worried and I think they may not be enjoying their holiday anymore. I feel so ashamed that everyone feels like they have to revolve their life around caring for me. 

Holidays should be a time when people with mental health problems get to relax. We deserve some time to try and heal and rejuvenate. I try and tell myself this but it is hard taking my own advice. I thought that I was undeserving of a holiday and this latest incident has made this feeling even stronger. I can’t even appreciate a holiday. Loads of people would love to go away to somewhere but don’t have the money needed to go. I feel so guilty. Why can’t I enjoy things like everyone else?

Mental health, sex drive and mood

I have always wanted to talk about my mental health and it’s relation to sex but I have had some misgivings. I am pretty much anonymous on my blog and on twitter but three people from real life know who I am. This makes it hard to talk about something so personal. In addition, you never know if you are going to stay anonymous forever. One day I may decide to shake off anonymity and I don’t want to feel like I would be embarrassing myself.

On the other hand, here I am about to talk about my sex life. After all, what’s the point in mental health blogging if I’m not open and honest about how my mental illness affects me?

When my partner and I were first together, like most couples, we had a great sex life. It was probably too good. I was high on life and felt all connected to nature. Obviously in hindsight, I was hypomanic. Yes, I was in a great new relationship but I felt overly optimistic and excitable. Everything felt so intense and beautiful. When you are in such a good mood, sex feels so much better.

What followed in our relationship were periods of lots of great sex interspersed with periods of no sex at all. My partner would find this difficult and thought it meant that I didn’t love him. Sometimes I worried about that too. I thought that if I didn’t want sex anymore, maybe I didn’t find him attractive. This made me question our whole relationship. The reality though was that my mental illness was getting in the way.

It was when I was depressed that I lost all my sex drive. I felt too tired, too weary of life. Everything was dark and miserable. I felt like my energy was being drained away from me. I couldn’t be bothered to dress, to wash, to face the world. Faced with these feelings, why would I have been interested in sex? I was desolate and you need to have some kind of life in you to have pleasurable sex. It wasn’t just that I wasn’t interested in having sex with my partner. I wasn’t interested in men at all. I didn’t even look at other men. My sex drive was non-existent.

I didn’t have sex when I was depressed and I had sex all the time when I felt high. However there was a tipping point I reached when I became so manic that my sex life was interrupted. When I got too manic, my behaviour became bizarre. If I tried to initiate sex with my partner he would not oblige. He told me later that he felt scared by my behaviour. I was laughing too wildly, eyes bulging, stare unflinching. Sometimes it was hard for him because he missed the intimacy gained through sex but he didn’t want to take advantage of me.

I am at a point now that I have started to gain an intense interest in sex again. This has come along with an improved mood. The increase in sexual activity has really brought my partner and I closer together. It is lovely to feel that deep connection again. However I am scared of what this means for my illness. I want to believe that this is just normal and that it means that I am not depressed anymore. However, I fear that it could be a manic episode coming on. I feel like my thoughts are going quite fast and I seem to be laughing too easily, perhaps inappropriately sometimes.

Sex is something many people in relationships have fairly regularly and consistently. It is hard for both my partner and I to have such an erratic sexual routine. Mental illness (and medications used to treat mental illness) can really take its toll on sex drive and therefore can take its toll on relationships. I think that it’s important to talk to your partner and try and explain that it’s not to do with them, it’s to do with the illness. If they love you they should hopefully be understanding.

Mental illness and my lost life in academia

I was never someone who had career ambitions really. In fact, when I was at school, I didn’t really even really consider what kind of job I would have in the future. However, there was one thing I knew: I wanted to learn everything I could about how the world worked. I was motivated by the dream of understanding the world. And I have to admit, I was also partially motivated by the feelings I got by being good at academic subjects. I wanted to do well in exams and feel like I had achieved something.  

As I worked through my degree, the drive to do well in the subjects I was interested in was overwhelming. I am a shy person and most people didn’t really believe in me. I can come across as not very serious and a bit distracted at times so I certainly don’t appear like someone who would be good at something academic. I wanted to prove people wrong and show them that first impressions are misleading. I started my PhD with a feeling of excitement. I had found something I could be recognised for. My self-esteem became tied up with this recognition.

When I was diagnosed with bipolar disorder and generalised anxiety disorder, my world changed. Suddenly I was incapable of working on my PhD. My brain was overwhelmed with energy and I was highly agitated. I was experiencing a bipolar mixed state and my anxiety levels were sky high. I couldn’t concentrate, I couldn’t read and I couldn’t write either. That was 3 years ago. I have never recovered.

My ambition to finish my PhD now looks increasingly unlikely. This realisation has been devastating to me. My self-esteem has been tied up with what I can achieve academically and suddenly this has been taken away from me. My whole sense of self has become eroded. Now I am totally adrift and don’t know what to do with myself. 

Each day has been filled with nothingness. I couldn’t even begin to tell you how I have spent the last few years. There have been many dog walks and also a lot of sitting. There have been trips to the shops for shoe laces and other such exciting objects. There has been a lot of tea and coffee drinking. When you don’t have any routine in your days you fill them with strange beverage drinking customs. I have developed a schedule of drinking times and have a multitude of options for different occasions. This is how I survive through the days.

My academic life had become a huge part of who I am. Mental illness has taken that away from me. I was wrong to let academic achievement define who I was but it was so easy to when I had such a vague sense of self to begin with. Everyone wants to be recognised for something. My mistake was getting too carried away with what people thought of me and letting it rule my life.

Yes you can be mentally ill, on benefits and go on holiday!

I think that there is a huge problem with how the mainstream media portray people with mental illness, people on benefits and people that fall in to both categories.

On this topic, the BBC have just published an article with the following headline: ‘Agoraphobic benefits cheat Tracy Johnson jailed for year’. Apparently Tracy Johnson claimed to have a number of mental health conditions. These included anxiety, depression, PTSD, hallucinations and agoraphobia. However, she was found to be working as a tour guide in South America. She was charged with falsely claiming £48000 in benefits. It was argued that she could not possibly be agoraphobic, or suffering from the conditions she said she suffered from, if she was able to travel the world. You can read the article at the following link: http://www.bbc.co.uk/news/uk-wales-27130728

There are a few things I want to say about this case and the way it has been reported. At the outset I want to make clear that I do not know if the correct verdict was reached; I do not know all the details of the case. Ms Johnson very well may have been fraudulently claiming benefits. However, there are a few problems I have with the coverage of this case and the way the article, the judge and the prosecutor have portrayed people more generally with mental illness who depend on benefits.

First of all, the article refers to Tracy Johnson living a “champagne lifestyle” because she has managed to travel to some holiday locations. There are two problems I have with this. First of all it implies that people are able to sustain elaborate lifestyles on benefits alone. This idea is misguided. The benefits system really isn’t as generous as many seem to think. It is hard enough to qualify for any incapacity benefits in the first place. The way that the Work Capability Assessments are set up makes it very hard for people with mental health problems to be found as unfit for work. If you do qualify the money isn’t enough to live a life of luxury on. It is enough money that the government believes you can just about survive on. 

The second related problem I have with this use of the term “champagne lifestyle” is the idea that anyone who is able to travel must be incredibly wealthy. Of course this is not the case. People choose how to spend their money depending on their priorities and for many a holiday is an important part of life. A benefit claimant may choose to use money from their benefits to travel to take a break and recuperate. This does not suddenly make them wealthy or extravagant.

The prosecution implied that if you have a mental health problem and you are on benefits, you should not be able to travel. As Ms Johnson herself says: ‘I am entitled to a little break. I think I'm entitled to go and sit on a beach in Goa.’ Of course she is. As long as she is not fraudulently claiming benefits obviously. People are entitled to spend their money (earned or through benefits) on what they see fit. Again, as she herself says: ‘you can sit on a beach in Goa watching the sunset and still be in a pretty desperate state’. Just the fact of going on a holiday when you have a mental illness does not mean that you are fraudulently claiming those benefits. Mental health conditions affect different people in different ways.

At one point the article states that ‘Johnson, who has also written novels, had posted on Facebook: "I am one spoilt girl”’. I am not sure what the relevance of the fact that Ms Johnson has written novels is. The subtle message seems to be something like this: of course Ms Johnson could not suffer from mental health conditions. She writes! People who are mentally ill are obviously incapable of writing or of any activity for that matter. We just sit around in a daze staring at walls all day. Better to lock us all up and make sure we never take a foot outdoors. No writing or travelling for us. 

The prosecutor sums up his case by saying that: “Tracy Johnson was living the life that honest, decent, hard working taxpayers could only dream of. While workers were going out to do their daily grind, she was shopping in New York or having a few days in Madrid.” Those on benefits have heard this kind of rhetoric before. The ‘hard working taxpayer’ is once again held up as the paradigm of virtue compared to the scrounging person on benefits. The indication being that those on benefits should be bloody grateful for what they get. If they are not fraudsters they are still an ‘other’ to the decent taxpayer. They don’t deserve holidays or respect for that matter. The language and the message are divisive and cruel.

People with mental health problems often find themselves incapable of working. They are forced to rely on other people for help. However, that help doesn’t come for free. There is a huge stigma surrounding those on benefits and the government and the media often portray them as scroungers, burdens on the taxpayer and fraudulent liars. Regardless of whether or not Ms Johnson was fraudulently claiming benefits, the implication of many articles in the media is that this kind of fraudulence is widespread. However, the real estimated level of benefits fraud is said to be less than 1%. 

To have to deal with this kind of stigma on top of your mental health condition is exhausting and painful. Those with disabilities on benefits are people who deserve to be treated with kindness and respect, not distrust and derision.

Honesty or positivity?

I was looking through my blog posts today and thinking lots of negative things. Of course, there were the standard problems of mistaken spellings and bad grammar. What really bothered me though was the inaccurate way I may be coming across.

I try to be completely honest in my posts and open up about things I would never talk about in real life. I would never tell anyone who knew me IRL that I self-harm. I wouldn’t tell them about scary intrusive thoughts I have or any of my catatonic behaviours. These are all just too embarrassing for me and hard to admit to, even to myself.

I realised though that the way I was writing a few of my posts was not completely honest. I noticed that I was often ending my posts on some sort of concluding positive note. I guess I thought that people would be annoyed with a negative or abrupt ending. It’s like when you read a book and you feel really let down if there is not some kind of upbeat or fulfilling conclusion. Sometimes the whole time you spent reading the book seems like a waste of time if there is not a satisfying end.

I seem to have applied this to my blog writing. But real life is not like this. There is no settled ending to what I am experiencing with my mental illness. The story just keeps unfolding. Sometimes there is a positive outcome or message; maybe I have grown as a person or become more hardened to life. However, often there is no positive spin I can take on my experiences. Sometimes what happens is just a bit shit really, but I’m forced to keep going in the hope that things will get better. Sometimes they do and sometimes they don’t. 

You are stuck between a rock and a hard place when trying to blog, tweet or talk about your mental health condition. Some people will always be going through a tough time and will talk about their battles every day. This could be seen as honest and refreshing but some would view this as negative and draining. Alternatively some people will try and be really uplifting in an attempt to bring everyone up with them. This is a noble intention but some people will view it as dishonest about the daily struggle of living with mental illness

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Personally, I admire all people who talk about mental illness, whatever their take on it. However, I still can’t help but feel like a fraud when I try and send positive messages to others with mental illness. When I see someone struggle I just want to hug them and say something encouraging. I could say something like ‘I am sure you will feel better soon’. However, I know that things sometimes don’t improve; sometimes a mental illness is chronic. 

So do I help people with positive messages and feel like a fraud? Or do I go down the honest route and drag people down with me? 

Personally, I think that I should be honest about how harrowing the experience of mental illness can be. You can’t help people with positive messages if those messages are empty. Just talking honestly about your MH experiences can be helpful to some people. If they recognise the similarity of your experiences to their own, they feel less isolated and alone.

Importantly, I think that there are ways you can be honest in a positive way when you are trying to help someone. I don’t think that just being honest about your experience drags people down. However, being honest about your difficult experiences without listening to others may not be that useful. To help people, you need to not only tell your story but allow them to tell theirs. 

When they feel down, listen to them. You can offer positive advice, as long as it is truly meaningful. Just saying ‘things will be better tomorrow’ or ‘there is always a silver lining’ are not very helpful because you can’t possibly know these things. 

So what should you say? You can say that you hope they will feel better soon and that you are thinking of them. If appropriate, you can remind them of times they have not felt like this and point out that they may feel like this once again. Perhaps you can point out that some people have managed recovery or remission and so there may be hope for the future. Most importantly, you can just show that you and are there for them and they are not alone.

I think that honesty about mental illness is crucial in getting more awareness out there and in helping people feel less alone. However, positivity also has its place. As long as those positive messages are truly meaningful.

What's in a face?

I used to think I could tell a lot about someone from their face. But I was wrong.

Obviously someone’s basic physical appearance doesn’t tell you anything about that person. However, I used to think you could read a lot about someone’s personality, thoughts and feelings through other physical cues which show up on their face and body. 

For example, body posture could indicate a number of things. If someone is strutting around you may infer that they are confident or, perhaps less kindly, arrogant. If someone is walking around in a less purposeful manner, stooping their shoulders and darting their eyes around, this could indicate that they are anxious and insecure.

The face is often thought to expose even more about a person’s personality. Perhaps if someone is smiling all the time you think of them as happy go lucky. If someone always furrows their brow you may think that they have a nervous or contemplative personality. 

The face may also expose someone’s thoughts and feelings at any one time. You look to the face to see how someone is responding to what you are saying. How they tense their mouth, move their eyebrows, where they fix their gaze and whether or not they laugh may all indicate what that person is thinking and feeling.

What I have realised over the years is that just as people lie in what they say, they are capable of performing non-verbal deceptions too. And I now strongly believe that these non-verbal deceptions are not the exception to the rule. People hide how they feel ALL THE TIME. The person who struts around is often just trying to hide their true feelings of insecurity. The person that always smiles may be covering up a deeper, darker personality. The person who never looks irritated at the controversial things you are saying may be seething underneath. 

The face that people show to the outside world may mask all sorts of thoughts and feelings. We constantly modify our facial expressions in to those that we deem socially acceptable. We want to make sure our face is responding in the ‘right’ way so that we are communicating what we want to be communicated about us.

This brings me to the topic of mental illness. Because of the stigma surrounding mental illness, those with mental illness may have a vested interest on hiding any negative or ‘strange’ thoughts and feelings. I often believe that it in my best interest to keep my condition hidden from others. This is why I blog anonymously. It is also why I modify my facial expressions to mask my inner turmoil. 

I want people to see me as a functioning, social person, capable of taking care of myself and others. I want them to see that I am engaged with what they are saying to me (even though I am often drifting off in to my own distressing thoughts). I want them to see someone who is capable of having fun and laughing along with everyone else. 

I often think that I must be giving off all sorts of signs in my facial expressions which indicate that I am feeling mentally distressed. The feelings which I have are so intense that I wonder how it is possible for other people not to notice. But they don’t. Not most of the time anyway. I must be some sort of facial disguising expert!

How much can you really tell about a person through their face? I would say: not as much as we would like to think. People lie about how they feel all the time and this extends to their facial expressions. 

Should we be pleased that we can hide our true feelings from our face? Yes and no. Obviously it would lead to quite a lot of social discord to always have people be able to read our thoughts and feelings from our face. We think lots of fleeting negative thoughts about others which may be best kept hidden. However, if you always hide your true feelings from your face, you can end up feeling very alone.

Many people with mental illness are having to perform a daily facial disguise operation. Society doesn’t exactly make it easy to feel okay with showing your distress to others. The pressure to conform is huge but the isolating feelings which come with conforming can be hard to bear too. I really hope that as time goes on it becomes easier to talk about mental illness. Then we can finally let our faces just relax for a little bit!

Let's talk about suicide

There is a huge stigma surrounding suicide and it is rarely a topic deemed suitable to talk about. However, it is important to acknowledge the existence of suicidal thoughts and actions and bring the topic in to the open. Many people with mental illness suffer from suicidal thoughts and allowing sufferers to talk about these thoughts may prevent suicides from occurring in the future. 

There are a lot of negative judgements surrounding suicidal thoughts and actions. To most people just the word ‘suicide’ is rather shocking. If someone has attempted or died from suicide, the word is often avoided altogether. Just recently I heard of a young man who appears to have taken his own life but the word ‘suicide’ was not attached to his tragic death. Instead it was referred to as an ‘accidental death’. Everyone knew what had really happened but it was seen as such a terrible and possibly also a shameful thing that people couldn’t bring themselves to use the word. Perhaps they hoped it would bring some comfort to the family to interpret the situation as an accident. However, this does highlight that people feel a lot of discomfort surrounding suicide. They see a suicide as a different kind of death than those caused by physical illness or injury.

One place that you do hear about suicide is on the train. A number of times I have been informed, along with the other commuters, that there will be delays to the train service due to a person jumping in front of another train. Whenever I hear this, my heart skips a beat and I feel terrible sadness and empathy with that person. They must have been in a lot of pain to see suicide as their only option. Unfortunately not everyone sees the situation like this. I sometimes hear groans of fellow passengers who are both annoyed with the delay and disapproving of the suicide. The reaction is always more extreme when the delay is caused by a suicide rather than, say, a signal failure.

Another rare time you will hear people talk about suicide is when someone in the public arena has killed themselves. People will often talk about how terrible it must be for the family. The family will obviously be devastated by the death of their loved one. Often this will be accompanied by feelings of guilt that they should have been able to help more. Most people realise the turmoil that the family must be going through. However, they often don’t extend their feelings of sympathy to the person who has died by suicide. They may express how selfish the individual may have been to leave his/her family and friends behind. This disapproval is especially strong if the person had children.

These common sentiments highlight that there is a huge stigma surrounding suicidal thoughts and actions. Often people will not understand how someone could ever become suicidal. They find it very hard to put themselves in the suicidal person’s shoes. They may judge those who have thought about suicide, attempted suicide or completed suicide as weak, irresponsible, reckless and selfish.

It is because of these kinds of judgements that people will often hide their suicidal thoughts. They end up suffering in silence. People have suicidal thoughts because they are in mental turmoil and they feel like they can no longer live with this pain. Often it may not that they particularly want to die. It is more a case of wanting the pain to go away and death seems like the only option available which will guarantee a relief from this unbearable pain. 

Suicidal thoughts and actions do not make a person weak. Dealing with clinical depression and other mental illnesses is exceptionally hard. Sufferers will have been strong just to battle through their intense mental pain for so long. People who have suicidal thoughts or suicidal intentions should not just be viewed as a selfish either. Sufferers may be unable to think of others when they are contemplating suicide because they can only focus on the intense and chronic pain they are experiencing. Depression has a way of distorting your view of yourself and the world and so the effect of your suicidal actions on yourself and others becomes confused. Sufferers may feel like their family and friends would be better off without them.

I myself have experienced suicidal thoughts although I am lucky in the sense that I have never tried to kill myself or made any detailed suicidal plans. I have a very open and understanding family and so I feel like I can tell them about my suicidal thoughts (to some degree anyway) without being judged. They are able to talk me through my suicidal thoughts and highlight all the reasons why suicide is not a good solution to the problem. However, for many people, there isn’t someone they can turn to. For many the response of others to their suicidal thoughts will be of shock, irritation, confusion and anger. Therefore the suicidal person feels like they cannot open up. There is no one there to help them work through these distressing thoughts and prevent them making a rash and fatal decision. 

Suicidal thoughts are more common than we would like to think. The stigma surrounding suicide means that people feel like they cannot open up about their suicidal thoughts. The problem is that there will be no one there to help this person analyse their thoughts and put them in to context. We need to work together to end the stigma surrounding suicide and allow people to open up about their distressing thoughts. We can then work towards helping these individuals and prevent more suicides in the future. 

If you do feel suicidal please talk to someone. If you don’t feel able to open up to someone that you know please see your GP or call someone at the Samaritans open 24 hours a day on 08457 90 90 90. There is always someone who can help you if you let them in.