Zoë's Story: My Anorexia

Zoë, co-founder of The Fementalists, has lived with anorexia for many years. Here, she opens up about her battle against the illness, something she still fights to this day. She also debunks some of the common myths around the illness using her own experiences.

WARNING: Zoë’s story contains themes that could trigger.

My name is Zoë and I’m a semi-recovered anorexic. I first developed symptoms that would eventually become full-blown anorexia in my mid-teens, during a period of extreme stress at home and school. By the time I left for university I was already in its grips, but things took a dramatic turn for the worse once I left home and was left in charge of my own life. All those meals I’d been forced to eat at home were no longer a problem and I could now exist on a diet of tea alone. I lost a lot of weight very quickly and instead of being horrified, most people were pleased for me, congratulating me on my new, slim body. Of course, this just made matters worse.

By the time I finished my first year, I had developed a full-blown eating disorder. Things then got even worse when a friend tragically died that summer, which pushed me even further into my disease. By the end of the summer holiday, I had lost a third of my body weight and was unable to eat normal meals. Actually, I was unable to eat anything that I hadn’t prepared myself, so I took over all the cooking duties in my house, cooking tea for four people every night and barely touching my portion.

Everything became obsessively measured, from the calories I was taking in, to my weight, to the exact weight and calorific content of everything I put into my mouth. I was permanently cold, but was elated at this new sense of control I felt over my life.

Looking back, for me, my anorexia was about several things all at the same time.

Firstly, it was about control, about having the ability to feel powerful in a world that felt uncontrollable and chaotic. Managing what I ate and my body weight was the sole thing I felt I could control in a world that had already shown me its ugly side, with experiences of abuse and sudden death taking away any sense of agency I had externally. If I could control my body, at least I wasn’t forced to face the reality that the world is essentially a chaotic place where bad things do happen. By restricting my food and measuring my food to the milligram, I could pretend that I was powerful and in control.

Secondly, my experiences of abuse, trauma and bullying had taught me that being visible was dangerous. I believed that if I made a fuss or was difficult then abuse would inevitably follow. So I decided to take up less room, to physically be smaller and so less visible, in the hopes that this would stop the abuse from ever happening again. I also wanted to ‘fit in’ more. Not because I wanted to be ‘cool’, but because I truly believed that if I looked more (what I thought of as) normal, then I wouldn’t stand out and would pass through the world unabused. I made myself meek, small and quiet in the hopes that I would be spared ever having to live through that again.

Thirdly, I sought perfection. All through school I had been praised and pressured for being smart, which culminated in a sense that I was supposed to be perfect. The perfect student, the perfect daughter, the perfect girlfriend, and ultimately, the perfect body. I think being raised in a Catholic school also complicated matters as I came to believe that fat equated with sin, particularly the sins of greed and gluttony. In my warped mind, fat was the visual manifestation of sin, and so being slim was being closer to perfection. I also think that media narratives that shame women for having visible fat closely parallel these ideas and compounded the problem, though for me they were not the main cause. This obsession with perfection only got worse after the sudden, tragic death of my friend.

Convinced that I was lucky to be alive, I strove to be the ‘best’ that I could be in honour of him. And best meant thinner. I wanted to have the perfect life because of the crushing sadness that came from the realisation that he would never have more time, so I should live for both of us. I’m sure for some people living a life that honours someone is a good, positive thing, but for me it was deeply destructive as I now owed not just myself ‘perfection’ but my friend too. Being ‘fat’ was now dishonouring him in my twisted little world.

These are just some of the reasons why I think I developed anorexia in the first place, and they are some of the more common reasons that other people I have spoken to give as well, but my story is mine and it’s important to recognise that everyone’s is different and has different causes and triggers. My story is not a universal one.

Eventually, after having dropped out of university when I went back after that awful summer, I began to see that perhaps my way of looking at things was flawed. This is especially brought home to me when a close friend ended up spending 6 months in hospital because of her anorexia. I’d love to say that I’m fully recovered now, but I’m not and to an extent I think anorexia will always be part of my life (not saying this is true for everyone, at all.) At times of stress I fall back into my old coping strategies – for that is what anorexia is to me, a faulty coping strategy – and the anorexic ‘voice’ in my head comes back. Despite it, I now live a reasonably happy life, have a long-term partner, my own flat, a first class degree, and friends. No, my life isn’t ‘perfect’, but I’m trying to abandon my perfectionism and just be happy.

Anorexia is a frequently misunderstood mental illness. Despite being the most deadly mental illness, misconceptions about the illness abound. Below are some common myths about anorexia, contrasted with my experiences.

Myth: They’re just doing it for attention.

My reality: To be honest, attention was the very last thing in the world I wanted when I was most ill. I wanted to disappear and be unnoticed. The idea of attracting attention was horrifying to me. I also hate this myth because it suggests that people are unworthy of attention anyway. If people were so desperate for attention and care that they were literally starving themselves and risking death to do so, surely they are in need of it!

Myth: It’s about looking more attractive (to men).

My reality: As above, for me the idea of becoming more visible was the exact opposite of what I wanted. I also find this idea that it’s all about pleasing men deeply sexist and heteronormative – not everything women do is for men!!

Myth: It only affects teenage girls.

My reality: This is just factually wrong. Anorexia can affect anyone, whatever their gender, and irrespective of age. In fact, the numbers of men and older people with it appears to be rising.

Myth: That anorexia is about vanity/being beautiful/body image.

My reality: Hardly! For me it’s a very faulty coping mechanism for coping with the world.

Myth: All cases of anorexia are caused by diet magazines/sexist media.

My reality: The role of the media and diet industry definitely have their role to play, and this shouldn’t be ignored, but my anorexia really wasn’t mainly about this, but, as I said, was a bad coping mechanism. I think the media and diet industry just made my anorexia worse, but they didn’t cause it.

Myth: All anorexic people think they’re fat.

My reality: This isn’t always true. Sometimes I knew that I was very small, but for me it was just that I was still too big even at that size, rather than thinking that I was fat per se. On the other hand, there have been times when I look in the mirror and all I see is fat, everywhere, it’s the only thing that I can see. I think this one varies a lot for different people and there isn’t one universal rule.

Myth: That inspirational ‘love your body’ and Marilyn Monroe pictures will cure us.

My reality: These things never did anything for me. I’m not a silly little girl, but an adult, intelligent woman. If anorexia was that easy to cure, I would have done it by now!

Myth: You can tell someone has anorexia just by looking at them.

My reality: Sometimes when I was my most mentally distressed was when I was at higher body weights. Many people who are not underweight are still anorexic and shouldn’t be dismissed. It’s a mental illness, not a body size. On the other hand, not all slim people have anorexia!! Finally, there’s the idea that once you gain back the weight then you’re magically cured... if only. Recovery is a long and hard process that’s about much more than weight gain and physical size.

Myth: That if you see someone eating/if someone enjoys eating then they can’t be anorexic.

My reality: I never hated the taste of food, in fact I actively enjoyed some of the food I ate, it was just a problem that I didn’t eat enough of it and had very restrictive and controlling behaviours around it, as well as other eating disorder behaviours.

Myth: That with enough willpower you can just snap out of it.

My reality: Like any other mental illness, ‘willpower’ and ‘just snapping out of it’ do not work. Anorexia is a serious and potentially deadly mental illness, not some kind of fad.

Myth: Anorexia is just an extreme diet.

My reality: My anorexia comes with a whole load of other mental symptoms such as obsessions and compulsions. Most people do not spend every waking hour of their lives thinking about their diets, however extreme, but when I was extremely ill all I could think about was food and starving and lbs. Also, as I’ve said above, for me it was a bad coping mechanism, not a diet.

Zoë blogs at: http://zedkat.wordpress.com and is on Twitter: @stfumisogynists

Bus Fumes and Cigarettes

This is an excerpt from my upcoming memoir. It starts on my fourth day in a psychiatric ward, after being sectioned for the first time. I had been sectioned for not eating and was barely drinking anything. In these four days in hospital, I had had one cup of water on day three but no food. I was starving and dehydrating myself because of threats to my family made by one of my voices, who called himself the devil.

I was prescribed olanzapine (also known as Zyprexa) but I refused to take it, as I believed that I was mentally well. The ward I was in was an upstairs ward, meaning that there were no gardens attached to the ward; the only means to the outside world were by leaving the ward.

I had been having blood tests each day and this fourth day was no exception. This morning’s results were brought in to me and two levels were highlighted as being dangerous. I’ve no idea what these levels were but the nurses told me that if I didn’t eat or drink anything soon I would die. At that point I didn’t really care. The devil was telling me that I had drank poison the previous day in the cup of water I had had and if I steered clear of liquids for a few more days, I would recover. I believed the devil, and the nurses could see they were fighting a losing battle.

After the nurses had failed in their attempt to scare me into eating and drinking, they walked away. I looked out of the window and saw normality going by. I longed to be down there, walking free and enjoying the fresh air. The more I thought about being in the fresh air, the more the air in the ward felt stale and contaminated. I thought that there were poisons in the air and the devil started agreeing with these thoughts. I panicked, and tried to open the window to get some fresh air. It only opened a small way, barely enough to get my fingers through the gap never mind my head.

I started feeling extremely claustrophobic and thought if I didn’t get outside for some fresh air, I would suffocate. I asked to be allowed outside but was refused, as I didn’t have any leave. I pleaded with them to have five minutes of fresh air but was told no. They brought in the psychiatrist who had been allocated to me, and I begged him to let me go outside for two minutes. He shook his head saying that he couldn’t allow it as I might faint on the stairs. I pointed out that there was a lift a few footsteps away from the door of the ward but he still refused.

He then made me an offer that if I ate and drank proper meals for the next couple of days, he would think about letting me go outside for a few minutes. I had an hour to eat and drink something and if I didn’t, he would have to start looking into alternative treatments. I had no idea what that meant but it didn’t solve my immediate problem. As a result, I didn’t eat or drink anything.

When the psychiatrist saw me an hour later, he said he would have to look at alternative treatments. I didn’t care; I had been obeying the devil so he wasn’t shouting at me at least. He offered me half a lorazepam (a sedative also known as Ativan), which he said would help with my panic. I had resigned myself to my fate of suffocating in the ward and thought that a sedative would maybe help me to fall unconscious and not feel the slow death. I accepted the lorazepam to the shock of the staff and waited for it to take effect.

While the drug started to take effect, I started thinking how much better it would be to have been a smoker. There were patients in all mental states, some on sections, some not, who were allowed outside a minimum of once a day to have a cigarette. Meanwhile, I had been festering inside for four days, not allowed access to fresh air. There were even patients who made escape attempts who were allowed outside for cigarettes again the following day, while I was locked inside, punishment it seemed for being a non-smoker.

The drug did have some effect a while later and did calm me down enough that I was able to breathe properly again. The psychiatrist saw me after it had taken effect and told me that he was looking into ECT (Electroconvulsive Therapy). I had no idea what that was but guessed that it was electric shock therapy. I didn’t realise that it was still being done and was a bit scared at this thought. I told him that I didn’t want it but he said that I didn’t have a choice. They would be able to do it without my permission.

That information really scared me. I did consider eating and drinking something to avoid it but the devil threateningly told me that if I did, he would kill my family. He told me to stop being selfish and thinking of myself, I had to think of my family. Did I want them to die because I was selfish? When the psychiatrist had finished telling me about ECT, I walked back to my bed feeling really scared. I still refused lunch and dinner though.

That night, after refusing the olanzapine for a fourth night, a doctor was called to speak to me. I had been given no information about olanzapine up to this point, apart from the fact that it was an antipsychotic. When I asked the nurses about it, they told me to speak to a doctor. When I asked doctors about it, they told me the nurses would give me information about it. Not helpful. I held out my refusal to take olanzapine and ended up being restrained and injected in a highly unprofessional and humiliating manner.

The following morning, I woke to a blurry world. Everything looked and felt weird. Even walking felt like a foreign activity. When I was offered meds, I accepted them out of fear. The tablet dissolved in my mouth, which admittedly disappointed me. I had been hoping to hide the tablet under my tongue and then spit it out. However, the dissolving tablet was a blessing in disguise. Even though it dissolved, the nurses still checked my mouth and under my tongue.

I was offered a bottle of Ensure Plus that morning and despite the devil warning me not to accept it, I drank it. Ensure Plus is a nutritional drink designed to prevent malnutrition. I was too scared not to drink it in case that too was somehow forced into me. Despite the horrible taste, it did make me feel slightly better physically. I hadn’t had any form of nourishment for two and a half weeks and had had about 200 ml of water in the previous four days.

Before long, I was used to my routine of four Ensure drinks a day with 5 mg of olanzapine in the morning and at night. I was coerced into taking sertraline shortly afterwards and was taking 200 mg within three weeks. I was also frequently woken from a nap with a large glass of orange juice. I hated when this happened as I’ve never really liked the taste of orange juice and it’s notorious for giving me headaches but I was too scared to refuse anything. I was having frequent headaches and migraines at this point and I didn’t want anything exacerbating them. However, the fear of humiliation made me drink it without complaint.

On my ninth day on the ward, a healthcare assistant saw that I wasn't allowed to go outside and asked me why. I told her that the doctors wouldn't let me because they said I would faint if I went down the stairs. The healthcare assistant gave me a look that said, 'That's stupid!' and told me to leave it with her. A short while later, she came to my bed area and told me she was taking me outside.

Not wanting to look a gift horse in the mouth, I jumped up off my bed and followed her outside. The air was thick with cigarette smoke and what smelt like bus fumes, but in reality, it was probably fumes from an ambulance or delivery van. Despite the air probably being far more toxic than the air on the ward, my first fresh air in nine days felt amazing. For a few brief moments, I felt normal again and could almost taste the ‘fresh’ air in my mouth!

I stood at the entrance to the unit for about 10 minutes talking to the healthcare assistant. After 10 minutes of feeling human again, she took me back upstairs. I felt a lot happier, but not quite happy. She got one of the student nurses to take me outside again that afternoon and I spent another 10 or so minutes with a half smile on my face. I was met with the aroma of the ‘bus’ fumes and cigarettes again, but it didn’t matter. Bus fumes and cigarettes were the smell of freedom.

I only saw the healthcare assistant a couple more times after this but I've never forgotten her kindness or common sense. I really think she stopped me from going completely insane.

My memoir will hopefully be published in the near future.

Why Do They Laugh?

Guest writer David writes about the pain of stigma in his poem 'Why Do They Laugh?'

Nobody understands
that I struggle with my self;
the oozing of my psyche,
people around
me stare, what's
happening
to me?

"He cannot learn,"
they chortle to
themselves. I try to
concentrate on their
eyes. I must look away,
like a passerby must
ignore a car crash.

But maybe I'm the victim-
the accident. Is that
what they see?

I know they're laughing.
"He's disturbing" or
"He's special" they
think. But what do
I do, instead of picking a
fight or acting normal,
I panic, I feel faint.
While they are being
amused there is one thought
on my mind- "Help me!".
But they don't. Why do
they laugh?
I've been deteriorating.
And slowly I have
noticed a fog, a deep
cloud that covers
one’s mind: schizophrenia.

I know I have it.
In a way I've always
known. It's not funny
to me. I want them to stop,
their laughs, but I know that
until that day, I'm
just hanging on.
I hope they realise
the pain and suffering
a snigger brings.

A Guide to Early Warning Signs of Mental Health Relapse

The first step to creating a list of your early warning signs is to think back to when you first became unwell.

What happened? Was there a big event that triggered your illness, such as bereavement? Or did it seemingly come from nowhere?

Once you remember when you first became unwell, try to remember how you were. Were you sleeping well or badly? Were you under too much stress? Try to remember as much as you can from that time of your life.

This is a list of possible early warning signs, but it is not a complete or definitive list. Just like your symptoms and treatment, your early warning signs will be as individual as you.

• Hallucinations, hearing things, seeing things, or even smelling, tasting or feeling something that isn't there.
• Problems with holding a conversation, speech problems.
• Racing thoughts, thoughts that race from one subject to another, sometimes randomly.
• Increased smoking, drinking or drug taking.
• Feeling unable to cope with even the smallest problem.
• Neglecting yourself, such as your personal hygiene or not eating.
• Changes in mood, such as feeling very low, hopeless, irritable and anxious.
• Suicidal thoughts.
• Feeling empty.
• Changes in movement speed, such as pacing or unable to get out of bed.
• Changes in sleep patterns, either sleeping too much or too little, or having more difficulty than usual getting to sleep.
• A blank facial expression.
• Delusions, but this can be difficult to notice yourself as they feel so real. The best way to gauge if you are delusional is to speak to someone you trust about any beliefs you have that are worrying or scary.

Make your list as detailed as possible and keep an eye on yourself. This is your best chance of staying well!

Zara's Success Story

Despite suffering from schizophrenia and being hospitalised at university, Zara successfully fought her demons and completed her studies. Here, she shares her inspirational story of hope.

Having psychosis or schizophrenia when studying is never easy.

Mine started at 6th form college and continued well into my degree. To be distracted in life generally is difficult, but when you’re trying to focus on other things that are important, it can be even worse.

Soon after starting sixth form college, I started to experience a depression. It started after a fairly trivial problem with feelings for someone not being reciprocated. With some influence from a new friend, I began self-harming.

Soon however, after a difficult fall-out with the same friend, my problems came out and I was referred for Cognitive Behaviour Therapy by my GP. This was going well and I began my second year of college. It was soon into the new academic year, a little before my 18th birthday, that things began to take a turn for the worst.

I can’t exactly recall how everything started, but I remember coming home and being upset and angry about my depression and about college, when suddenly I heard my first voice.

“Go upstairs and cut yourself,” it commanded. As I climbed the stairs it commanded further, “Quickly, go and do it now, hurry up”. This would be the start of a huge distraction in my life and my studies. Hence, the psychosis began.

A few months later I was referred to the Early Intervention Team by my child psychologist. At this point I was still in college and it was becoming increasingly more difficult to concentrate as I now had a few voices in my head and believed that I was being spied on by Asian men.

Instead of concentrating on the subjects I was learning, I was formulating and considering new ideas in my head.

These ideas, delusions, were becoming more important than my studies and I would wander around where the voices told me to go during my frees. I started going off alone, wherever the voices instructed me to go. The Early Intervention Team wanted me on anti-psychotics, a drug called olanzapine. Oblivious to what the drug even was, I started popping the pills.

If I thought college was hard then, it became even harder on the olanzapine. Dragging myself up in the morning in a somnolent stupor I would be late for class, walking like a zombie around the campus. I tried very hard to concentrate on my studies, but what with the psychotic symptoms and the olanzapine, it was very difficult.

How I even passed my A Levels, I still do not know. I somehow managed to get into university.

Before I knew it, I was starting university. I was still experiencing psychosis. By this point I was taking a different anti-psychotic called aripiprazole, but was increasingly missing doses due to late night outs with alcohol. I’m sure this didn’t help, but at the time I really didn’t value my medication since I wasn’t entirely sure if I was ill or not.

My voices and ideas were making me increasingly more low.

I also contracted laryngitis and was feeling very under the weather. One thing led to another and I was hospitalised for the first time in a place I didn’t know very well. I eventually dropped out of university, too behind on class after the hospitalisation. I tried going back, but was too distracted.

Soon after this I was hospitalised again but managed to be stabilised on a medication called quetiapine. I decided I would go back to university, but somewhere nearer in case I relapsed.

University started and I was feeling fairly confident after over half a year of wellness. However, the quetiapine made me extremely tired after I had taken in and well into the morning, so I started to miss half days of university after only being able to rise at almost midday. My flatmates started to become suspicious and curious about why I appeared, what they must have thought, lazy. I told them I had a thyroid problem and they believed me.

Around a year after my 2nd hospitalisation, I started to reminisce and become very angry and sad about what happened. I started drinking and my flatmates again became suspicious. I told them everything. It was after this that they started to ignore me.

Due to nights out, I started to neglect taking my medication regularly, again.

As the new year began, a year of wellness, I decided with my psychiatrist that I would attempt to lower my dose. Unfortunately this did not work out. From my university flat I could see a church spire and was drawn towards it. I started to experience my second psychosis and believed I was God’s new messenger. Due to this I started to reduce my medication myself, believing it was blocking me from God.

My head felt like it was all muddled and jumbled, I started to quiver and get hot and cold sweats. I struggled to make a deadline and simply handed in whatever I could. I was soon sectioned and sent to hospital.

Coming back after hospital was extremely difficult. I had missed many projects during the almost 2 months I was off and was now under a lot of pressure. Thanks to my learning mentor, who has been vital to me during university, I got some extensions.

Now stabilised again, I worked very hard and managed to make my deadlines, despite experiencing a mild religious psychosis again and reducing my medication, only resuming it again in order to avoid being sectioned again.

I was hospitalised again during the summer, but returned to my second year stable on a risperidone depot injection. However, I started to experience depression with a diurnal mood variation, and found moving back into the location extremely difficult.

Now, fairly traumatised by hospitals and psychosis, I found myself growing increasingly isolated and troubled by what I had experienced.

Class was alright and I desperately tried to seem normal to everyone else and instead of missing lots of class like the year before, aimed not to miss anymore class. However, a few months in and I was relapsing yet again.

I became distracted in class by what I thought were colourful spirits resting in the heads of everyone I met. I stopped concentrating, instead considering which colours people where and what their spirits were saying. I started to believe I was in a video game, wandering around town on my lunch and breaks looking for ways to boost my energy and various other game-like actions. Soon I started getting paranoid, thinking that aliens were coming to kidnap me.

Going into university soon became not an option.

In fact, leaving someone’s company at all became very difficult for me. I started sleeping on my parents’ floor next to them, convinced I was going to be abducted.

Unfortunately the essay I had started working on was about video games. My parents and professionals became worried that this was deepening my psychosis. It was so difficult to concentrate on the essay when I had all sorts of other things to think about. Work soon became not an option as I was so consumed with delusions, making them more important than university.

I was soon hospitalised again for the 5th time and again started missing vital university work.

I started working on my essay a month or so into being in hospital. At this point I was being weaned onto clozapine and was exhausted all the time. A parent would bring my laptop into the hospital canteen and I began to do as much as I could to keep up with my work.

I was determined not to drop out of university again, so determined that I managed to get a fair bit done.

Again, my mentor was a huge help. After almost 3 months I returned to university, with my tutors recognising that I had a huge uphill struggle. I am still very grateful to have people who are forgiving and understanding of my circumstances.

Since then I have remained well. My third year has been very much stable, although I have had problems with being social and still continue to do so.

Schizophrenia and psychosis made my education very turbulent, but I managed to stay strong and am very pleased that I continued with my studies.

I know it may seem difficult, but if you continue to strive and overcome problems then there is always hope.

Despite the huge challenges she faced, Zara finished university and graduated with a 2:2.

Interview with Author, Louise Gillett

Louise Gillett first experienced psychosis at 19, and after a second episode aged 25, she was diagnosed with schizophrenia. Following a third episode, she recovered and has been mentally well for twelve years. She wrote her story in ‘Surviving Schizophrenia: A Memoir’ available on Amazon as an eBook or Paperback.

Tell us a little bit about yourself

I am a writer - I love saying that! I am also a wife, a mother of four children, and a happy, fulfilled and busy person. I was given a diagnosis of schizophrenia when I was young, which defined and limited my life for some years, but which now is very much irrelevant to the picture of who I am.

When did you first become unwell?

I suppose that depends on how you define mental illness. I look at it as emotional distress, and I suffered that from a very early age indeed. I was a very anxious child - due to external factors - and that anxiety, fed by an erratic lifestyle, and by the fact that I smoked cannabis from a very young age, led to my first hospitalisation at the age of 19. I am 44 now, so that was quite some time ago.

How did your illness affect you at first?

I was in my first year at University, studying law. I was nervous and panicky, but I'd given up smoking cannabis by then, and I just about coped with life. I enjoyed my studies. But then I got a crush on a fellow student, who didn't return my interest, and that didn't help my state of mind. I completely embarrassed myself. After that I couldn't seem to concentrate much, or hold a normal conversation even with friends. I couldn't relax. The pressures of life were just getting too much for me.

Then, in the Easter holidays, matters deteriorated. I'd just left my boyfriend, who I'd lived with since I was sixteen, so I was homeless. I was sleeping (although not sleeping much!) on my sister's floor. And I was often hungry, because my mental state was deteriorating, and I was not really capable of looking after myself. I lost a lot of weight. I had given up smoking cigarettes a couple of years before, but started again, quite heavily. I remember fainting on one occasion, cigarette in hand, and burning a hole in my sister's new hallway carpet.

I also started smoking cannabis again - which had always made me paranoid. I began to imagine all sorts of things, for example that I was being watched by the national security services, and the paranoia just would not recede.

Eventually I was sectioned - I don't think anybody could figure out what else to do to help me.

How did you feel about your diagnosis at first?

I shattered under the weight of the diagnosis. I was not told of it after that first breakdown. After I got out of hospital I went back to University and finished my degree - it was never easy, but I pushed through, because the one thing I had always been sure of about myself was that I was gifted academically, and so it was important to me to gain my degree, to have concrete proof of my intelligence. I was still overcome by nerves though, which crippled me in almost every situation. But essentially I thought of myself as normal, although I knew that I was a very anxious person.

When, after my second breakdown, at the age of twenty-five, I was told that I had schizophrenia, my sense of who I was completely disintegrated. I felt that I had nothing to be proud of any more. Eventually I claimed disability benefits, was given a housing association flat, and became quite comfortable materially - I was not well off, but I was no longer concerned for the practical aspects of my survival.

I remember, when I was about twenty-seven years old, telling a mental health nurse who was helping me fill out a form for Disability Living Allowance that I felt guilty about collecting benefits when I was able bodied - she reassured me that I was entitled and I put my doubts to one side. I accepted the fact that I was no longer capable of leading a normal life, because I was a 'schizophrenic'.

How does your illness affect you now?

Not at all. I take no medication, and I have no symptoms of mental ill health whatsoever. I have taken no medication for more than twelve years now. I had CBT a couple of years ago, with a very good therapist, and for the first time in my life I discovered what it was like to live without anxiety. Now, if the anxiety creeps back, I spot it and tackle it quickly. And of course, I am always aware that I need to look after my health - mental and physical. So there are basic aspects of my life that I take very seriously - I make a huge effort to stay calm, to eat well and to sleep well, and to exercise. I need to look after myself, because I have a family to look after - a lot depends on me!

How do you feel about your diagnosis now?

I see it as a learning experience. I don't see that my pathway to wellness could have been different. I had to accept the schizophrenia label, to learn what it did to me and to my sense of self, and then work through it all and come to the understanding that it was a complete nonsense. In fact, I see now that I was never 'schizophrenic' at all, and in my opinion the people that impose these labels would not do so if they fully realised the harm that they caused.

I don't resent anything that happened to me, but I do resent the fact that the label of schizophrenia is still given to young people today. I know the damage it did to me, and I want others to understand that they should not identify themselves as 'schizophrenic' - there are many better ways to understand and deal with their emotional and behavioural problems.

I also think that there should be official recognition that full recovery, with or without medication, is possible.

What helped you to recover?

Recovery has been a long journey, but it started with just a feeling that there must be something more to my life than the very limited existence I had come to accept. At that time, I was living in a YMCA hostel, on benefits, attending a day hospital. I participated in no social activities. In the terminology of Alcoholics Anonymous, I had reached my personal 'rock bottom' - had become as low as I could be, and the only way now was up.

In practical terms, having a routine has helped. Once I decided that I needed to change, I started to eat better (and less) and to exercise. I had to practice self-discipline - by swimming daily, for example, I improved the condition of my body and mind. Eventually, I found paid work.

I think it is important to keep busy. Having a family of my own has helped me most of all - knowing that I am loved and accepted on a fundamental level, and that I have a deep sense of responsibility to those I care for, has given me a place in the world, and made sure that I lead my life as well as I possibly can.

A lot of my problems were caused by not listening to myself - for example, I knew I should not be smoking cannabis, but I did it because I did not know what else to do, or where else to go if I broke with my set of friends. I listen to my own instincts more now - and I have support when I need it, from good friends, from my husband and in the very pleasant company of my children.

Was there any treatment that made you worse?

The whole hospital experience was dreadful. Being forced to take drugs was physically and emotionally traumatic - I will never accept that this was necessary or therapeutic. If I ever got ill again, or one of my relatives did, I would avoid NHS mental hospitals like the plague!

Having said this, I know people who have been helped in the same hospital that traumatised me. I think a lot of this is to do with attitude - with being open and willing to accept help. I also know that medication helps some people, and that they are happy to take it for the rest of their lives rather than risk becoming ill again.

What do you do nowadays to stay mentally well?

The same things that set me on the road to recovery - I eat well, sleep well and exercise regularly. Try not to put too many demands on myself. Spend time and effort building up a social network, have fun. Enjoy life as much as possible! I look after my relationships. And I nurture my sense of self - I constantly work on things like fostering a sense of belief in myself.

It could be easy to slip back into negative patterns of thinking, so I stay aware of my thought processes and I use this knowledge to consciously stay positive.

Any advice for others who are, or who have been, ill and for their friends and families?

My advice for others who suffer from mental illness, and for their loved ones, is never to give up hope. Recovery is always a possibility, even in cases that seem the most intractable. I would advise people to look for support on the Net, to educate themselves about the subject of mental illness. Not to buy into the medical myth - all this talk of brain disease and chemicals gone awry makes people feel hopeless about the possibility of change.

Above all, people should be encouraged look at their problems in a human way. In Agnes' Jacket, Gail Hornstein quotes Frieda Fromm-Reichmann, who 'insisted schizophrenia was a condition of abject loneliness caused by early experiences of trauma that could, even in its most severe forms, be healed through relationship'. It's true. So never be ashamed of what has happened to you - reach out to others, find support, give support, keep busy, work towards wellness. And when you get there, spread the word of your recovery!

Louise's blog is at http://schizophreniaattheschoolgate.blogspot.co.uk and she can be found on Twitter @Louise_Gillett

Schizophrenia and Psychosis: What's the Difference?

What is Psychosis?

Psychosis is a psychiatric term for losing touch with reality. It is a very broad term and the severity of it can range from mildly unusual experiences to severely impaired thinking. The main symptoms of psychosis are hallucinations (e.g. hearing voices) and delusions (believing something that is obviously untrue) but it can also result in low moods and stop a person from continuing daily life as normal.

Psychosis can be caused by very different reasons, from mental illness to physical reasons. Parkinson's Disease can bring on an episode of psychosis, as can drugs or alcohol. However, drug and alcohol induced psychosis doesn't usually last very long and can be as short as a few days. When a person is suffering from psychosis, they are said to be having a psychotic episode.

Recovery from psychosis varies, and sufferers can have a one-off episode and never become unwell with psychosis again. Others can have repeated episodes throughout their life but be well in between. Around a quarter of people who have a psychotic episode never experience psychosis again.

What is Schizophrenia?

Schizophrenia is a psychiatric term for losing touch with reality. It is a very broad term and the severity of it can range from mildly unusual experiences to severely impaired thinking. The main symptoms of schizophrenia are hallucinations (e.g. hearing voices) and delusions (believing something that is obviously untrue) and it often results in low moods and stops a person from continuing daily life as normal.

So, What’s the Difference?

Aside from the frustration that sufferers feel when trying to spell those two words, psychosis and schizophrenia have a lot in common. In one sense they are the same thing. However, psychosis isn’t a diagnosis as such. It can be used as a diagnosis though; I was initially diagnosed with psychosis. However, with schizophrenia, a sufferer will have had multiple psychotic episodes within a six-month period, or one long psychotic episode of around that length.

For the diagnosis of schizophrenia to be made, a sufferer would often have other symptoms such as disorganised speech and thinking (such as an inability to a complete sentence or for their speech or thoughts to change subjects multiple times in a short timeframe). However, if the symptoms of psychosis are particularly ‘bizarre’, the other symptoms aren’t always necessary for diagnosis. A ‘bizarre’ symptom of psychosis would be if the sufferer truly believed that they were under investigation from the CIA because they had worn red lipstick when they were sixteen.

Those who have bipolar can also suffer from psychosis. These sufferers usually experience the stereotypical symptoms of bipolar, very high and low moods, along with the classic symptoms of psychosis, hallucinations and delusions.

With schizophrenia, the prognosis varies from person to person. Like psychosis, someone with schizophrenia can suffer for a prolonged period of time but never relapse and remain well for the rest of their life. Others may have relapses but remain well in between. However, some never recover to a suitable standard of living. Estimates at the percentage of this group vary from between a quarter of sufferers to a third.

How Are They Treated?

Schizophrenia and psychosis always require treatment but opinions as to what the treatment should be varies widely across the world. In the UK, the treatment of choice is antipsychotics and talking therapy but other countries use other types of medications alongside therapy. There are also specialist teams available. The success rates of all treatments vary and therefore, a person should always have a say in their treatment.

As the symptoms of schizophrenia and psychosis vary from person to person, it would make sense that treatment would vary from person to person. Sadly, that is not always the case in this country. However, with several different medications and talking therapy available, it is possible to find a treatment that is highly effective.

Unfortunately, as psychiatry can be like a guessing game at times, finding the effective treatment can take time. The best thing to do, is if you find a treatment that works, stick with it. If it is medication, stay on it for as long as you feel is necessary, even if that is many years. If you choose to come off medication, always do it under supervision from a doctor or psychiatrist and always reduce slowly. If talking therapy is what you find effective, keep attending until the therapist says that you are strong enough to finish. That doesn’t mean that you will be without any support though.

Even after a person is stable and in long-term recovery, community support will usually be given for a lengthy period of time. Regular reviews with a psychiatrist should also occur, at least twice a year for a few years. This is to ensure that a person does not become unwell and suffer another psychotic episode.

How to Stay Well

When in recovery, a person should always make a list of their early warning signs (see below) and formulate a plan with their care team (psychiatrist, CPN (Community Psychiatric Nurse) for example) for what to do if they think they are becoming unwell again. The basic plan should be that if a person notices that they are experiencing some of their early warning signs, they should contact their care team immediately. However, it would be useful for the person along with their care team to detail what steps will be taken if the early warning signs start showing.

This could be having more intensive support in the community for a while, or it could be increasing a medication. It may feel like a setback, but as with any illness, it is better to catch it early. Catching it early can prevent a full-blown psychotic episode, and with support, a person can continue to live as before.

The Prognosis

The prognosis for psychosis and schizophrenia, the latter in particularly, used to be very poor. Sufferers weren’t expected to be able to live decent or fulfilling lives and essentially, it was like their life was over.

However, there is no reason anymore to stop a sufferer from working, living independently or starting a family if they feel able. Many people with schizophrenic and psychotic diagnoses do live these sorts of lives to great success, with and without support.

If you receive a poor prognosis, just remember that the doctor or psychiatrist isn’t always right. Six months before I came off antipsychotic medication, I was told that I would be on it for the foreseeable future, several years at least. They were wrong!

The life you want to live is possible. Keep fighting your illness, and that life can be yours!

Guidelines for Submissions

To submit to Still Here, email me at schizophrenicgb@gmail.com and I will reply to your email as soon as I can. As Still Here is a free resource with almost no costs involved, I cannot pay contributors for their work. However, I can post links to your website or blog if you wish, so that if someone is interested in seeing more of your work, they can.

Acceptable submissions include factual articles, factual stories, fictional stories and poetry that you have created yourself or own all the copyrights to. Submitting your work to Still Here means that you are allowing me to publish it on the blog and that you are the creator or the copyright holder.

If I feel that a 'trigger warning' is necessary on your piece, there will be a warning sentence at the beginning. A trigger warning is used when talking of self-harm, suicide or any other topics that could cause harmful distress to a person. I am aware that some people find trigger warnings to be patronising, but as someone who has been triggered by images and descriptions in the past, I choose to use them.

If you would like more information about yourself to be used at the end of your submission, please provide it in your original email. Things like Twitter accounts, Facebook accounts, blog addresses and websites are suitable, but I would prefer not to publish your email address, phone number or home address. If you would like to provide a wider address for yourself, such as Swansea, Northern Scotland or New York, this is fine. However, few people have done this and it is not necessary for a submission.

If you don't wish to use your real name, you can write under a fake name. You can either provide a fake name, or I can come up with one for you. I will confirm the fake name with you before the magazine is published to make sure you are happy with it.

Factual Writing

For factual articles, I ask that it is a minimum of 400 words or thereabouts. I don't like imposing a maximum word count, but for the sake of guidelines, I'd say that an article should not be much longer than 2,000 words. I will not publish bad language at all, but if bad language is part of a book excerpt or absolutely essential to a piece, asterisks will be used instead.

Fictional Writing

Anyone wishing to submit fictional writing should follow the guidelines of factual writing.

Poetry

For poetry, I have no verse or word count. Two or even three shorter poems could be submitted if you would like. As with factual articles and fictional writing, bad language will not be published and asterisks used instead. It is probably best for poetry that bad language is not used at all.

If Your Submission is Used

I will email you as soon as I can to let you know that you are being featured, along with the publication date of your work. I can make minor changes to your piece after it has been published, or even have it removed if you wish, but be aware that people will have already read read it, and maybe have saved or printed a copy off. Bear this in mind when submitting your piece.

If you have any other queries about submissions that haven't been answered here, please email me to ask. All submissions and queries should be sent to schizophrenicgb@gmail.com

About Still Here

I remember hearing a 'joke' about schizophrenia a while back.

"You're never alone with schizophrenia."

It was true of me, I had a voice that didn't leave me alone for a year and I know it can also be true of other sufferers. However, not being alone doesn't mean you can't be lonely. Even with a myriad of voices, a sufferer can be so lonely.

I created Still Here to try and help those who are living with schizophrenia and other mental illnesses to feel less isolated. I also try and educate others about mental health and answer various questions. It started off as a magazine but now is a blog for people to find help and to share their story.

Why 'Still Here'?

The title has two meanings. For one, it means I'm still here, I'm still alive.

The second meaning relates to when mental illness is talked about and sufferers can sometimes be said to not be 'all there'. Even when a person is supposedly not 'all there' they are still there. Still here.

What is Schizophrenia?

Schizophrenia is a mental illness that is often severe and debilitating. There are two types of symptoms of schizophrenia, positive symptoms and negative symptoms. Positive symptoms can be described as ‘things that are added to a person that shouldn’t be there’. These are things like hallucinations (such as hearing voices or seeing things that aren’t really there) and delusions (believing in something that isn’t real). Negative symptoms can be described as ‘things that are taken away from a person that should be there’. These are things like lack of motivation, low mood (depression) and social withdrawal. While there currently is no perfect cure for schizophrenia, there are various treatments for schizophrenia, such as medication and talking therapy.

Help for schizophrenia is usually found by visiting a doctor, but this can be a scary process. However, it is always best to see a doctor as soon as possible as, like any illness, the quicker it is dealt with, the better the outcome is. Whilst the prognosis of schizophrenia used to be very poor indeed, to the point where an individual was condemned to living out their life in an insane asylum, schizophrenia care has improved dramatically and sufferers can now live independently, raise a family and some are able to hold down jobs.

Why Create Still Here?

Since being diagnosed with schizophrenia, I developed a passion for writing. I loved writing articles about schizophrenia and mental health in general, and wanted to get them out to a large audience. I decided that creating something myself would be the best way of getting my articles out and finding others who would want to share their story.

I also love writing about all aspects of mental health, not just schizophrenia. Whilst it can be draining to write about mental health and schizophrenia all the time, I also find it rewarding when I receive feedback telling me that something I wrote was useful or interesting. Plus, as I hate having to hide my identity from those who know my diagnosis, and equally hate having to hide my diagnosis from those who know my identity, I want to try and wipe out stigma.

A common misconception about schizophrenia is that sufferers are violent. That is the part of stigma I would love to destroy. Whilst there is another common misconception that people with schizophrenia have multiple personalities, I am not as concerned about that side of stigma. It is being seen as violent when I am anything but violent that I would hate more!

How Do I Read the Articles?

To read my articles, click on the Katy's Articles tab and click on the article you would find interesting. To read guest articles, click on the Guest Articles tab and choose whose story you would like to read. On mobile devices, you can find the two tabs by clicking the down arrow next to the Home tab.

How Can I Share my Story/Ask a Question?

If you would like to contact me about contributing or about any other issues, please email me at schizophrenicgb@gmail.com If you are hoping to share your story, please read the guidelines for submissions here.

Please help me make Still Here a real success by spreading the word of it!