Still More To Do To Tackle Mental Health Stigma

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For mental illness sufferers, an underfunded NHS, discrimination against benefit claimants and a negative tone from the media is still creating a society that misunderstand and stigmatise.

A lack of funding for mental health and parity of esteem in the NHS reinforces the view that mental illnesses aren’t as important or as serious as physical ailments. It gives the impression that there is a quick fix, with a few sessions of therapy and some medication it will disappear the problem. Many people wait months, even years, to see a therapist with the NHS. The dreadful reality is that for some it comes too late. For complex conditions, the right medication or combination doesn’t always work the first time. It can take patience to find the right medication.

The High Court ruling that changes to PIP (Personal Independence Payments) were ‘blatantly discriminatory’ against people with mental health problems proves the Government aren’t committing to their pledge to end stigma and discrimination. PIP is a benefit for those with disabilities, and that includes mental illness. Anyone with disabilities can apply, if they’re in employment or not. It’s designed to cover the extra costs that come with having a disability. A person applying may not be able to cook a meal for themselves for instance, and need someone to do this for them. People with mental illness often find leaving the house to be an insurmountable task and need support to do so. This is the aspect of PIP (the mobility section) that the government decided to change last year. People who were unable to travel independently on the grounds of psychological distress were not entitled to the enhanced mobility rate of the benefit.

The almost constant barrage of negative views in the media against benefit claimants strengthens public opinion that those with long term, severe mental illnesses are in fact lazy work dodgers. Dare to go on a message board on any well known news website and the vitriol against those with mental illness is clear to see. People proclaim, “There were never this many people with mental health problems when I was young!” To that, there has been a rise in people seeking out help and support in recent years. The ‘chin up’ and ‘keep going no matter what’ British attitude has kept people silent and unwilling to find help for decades. This attitude has ruined and cost lives that could have been saved. Severe mental illnesses such as Bipolar Disorder, are not as common as people believe. Only 2% of the UK population have been diagnosed.

Much of the ‘awareness raising’ centres around depression and anxiety. It’s time to move forward and introduce the general public to illnesses that are extremely damaging and life changing. Personality disorders, Bipolar, Psychosis, Schizophrenia, and PTSD deserve more positive attention. For many people, as soon as the term ‘mental health’ is brought up, what comes to mind is depression and anxiety. In no way am I trying to say that depression and anxiety aren’t important, they can be crippling and severe. The problem here is that so much emphasis is put on these conditions, but we must be speaking up about all mental health issues. There are conditions out there that are seen as less palatable and not as relatable. The general public can relate to depression and anxiety as they are more common and chances are, they themselves or someone they’re close to has suffered from these conditions. It’s easy to forget about a disorder when you have no real life experience of it. These less talked about conditions are also more stigmatised. With a personality disorder you’re seen as manipulative and attention seeking, with psychosis you’re seen as crazy and could snap and murder someone at any moment. Continuing to not pay these conditions any attention leaves sufferers feeling incredibly isolated and alone. We need to raise awareness of all conditions under the mental illness umbrella. Ignoring conditions because the conversation is harder to start will only further alienate sufferers. Allow people to share their story. Their experiences are valid and important.

For someone that struggles daily with a debilitating mental illness, it can feel overwhelming to be faced with such adversity. To deal with a severe illness and to know that there is blatant discrimination embedded into society is exhausting and infuriating. It takes a great deal of strength to keep going everyday knowing this. Having a mental illness, being aware of this and speaking out doesn’t equal weakness, in fact it shows how strong you are.

Relationships and Bipolar

 

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Relationships are difficult for everyone, but they can be even tougher when you have a mental illness. Each relationship I had before my diagnosis of bipolar suffered as partners found it difficult to be around me; they never knew which Katie they were going to be greeted with.

I didn’t have a serious relationship until I was twenty. I met someone on a night out and we instantly clicked. At first it was fun and we both looked forward to seeing one another. We went out for meals and nights out dancing together. We went on trips away to places like the Cotswolds. We were happy, but it didn’t last. She told me she could no longer cope with my unpredictable moods. She had enjoyed spending time with me she said, and could look past the bursts of anger and paranoia I had often displayed. But that now I had changed. I was no longer fun to be around and it was bringing her down. She had wanted an easy going relationship, but had realised now that I was too intense, too high maintenance.

I quickly found another partner, and we formed a bond online. It was a long distance relationship, with her in Manchester and me in Reading. We made it work and I admired her sense of humour and vibrant personality. Suddenly though, to me, she expressed an exasperation over my constant talking, my fits of rage, and my lack of concentration or planning that was needed to see her. My inability to listen to her concerns about my behaviour didn’t help, and she felt it was best to just be friends.

After two failed relationships in a row, that both ended because of my behaviour, I began to see my personality as flawed. I felt I was doomed to short term relationships, that sputtered out when they realised just how difficult I was to be around.

Then I met Jimi. We met online, then chatting occasionally on the phone when we decided to meet in person. We ended up having two dates in one day.  We bonded over our love of all things nerdy, and our similar tastes in music and literature. Our personalities were very different, but it worked. He was a calming influence on me and taught me to be more patient. I taught him to have more confidence in himself and to be less socially awkward. He has stuck by me through some of the most difficult times in my life. When I had a breakdown and had to leave my dream job. When I was diagnosed with bipolar disorder. When I’ve been manic and unpredictable and angry. When I’ve been suicidal. He has taken it all in his stride and remained his compassionate, caring self.

We’ve now been together for eight and a half years and two and a half years ago we married. My Dad summed him up in his speech when he called Jimi “a true gentle man.”  I’m proud to say he his my husband.

It is possible to have a healthy, long term relationship with someone when you have a mental illness. I am proof of that. It’s not easy, but never settle for someone that doesn’t understand your illness. You deserve to be loved and cared for.

Taking Medication For Your Mental Illness Doesn’t Equal Weakness

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Every evening at 10pm, my husband’s phone starts to beep. It’s a daily alarm to remind me to take my medication. I go to the kitchen drawer where the tablets are kept, and rustling around (because it’s our lets shove everything we don’t know where to keep in this drawer, drawer) I’ll find them. I’ll take the 100mg Lamotrigine, 50mg Aripiprazole and 50mg Sertraline. They’re a combination of a mood stabiliser, an antipsychotic and an anti depressant. Taking medication is a part of my night time routine, as much as washing my face and brushing my teeth. I never hesitate to put them in my mouth and swallow them with a gulp of water.

These tiny pills keep me stable. They allow me to function and get up in the morning. They counter the negative thoughts that lead me to feeling desperately depressed and suicidal. They stop any manic episode from emerging and causing me to become a whirlwind of self destructive hyperactivity. They silence the cruel and vicious voices in my head when I’m depressed, or the delusions that make me believe I can do anything when I’m manic. With all that in mind, why would I not take them? Why would I choose to be poorly? I’ve learnt that I can’t live without medication, otherwise bipolar completely overruns my life. It sweeps in like a high tide, submerging my true self, and the low tide never arrives. It controls my life, and I’m resolute that I’ll never knowingly let that happen again.

It’s not a weakness, or a flaw in my character to take medication. I’m not naive, I haven’t blindly allowed a doctor to prescribe them. It took a long time to come to terms with the fact I needed medication to survive. Long discussions with my psychiatrist allowed me to make informed decisions about what approach I wanted to pursue with my treatment. I didn’t settle for meds that left me with debilitating side effects. I tried a number of meds and combinations of them to find what worked for me. It was a long process but ultimately more than worth the time and effort.

I’ve always prescribed to the idea that those living with long term mental illnesses are strong. We manage to live through our struggles everyday and emerge stronger than we were, whether we realise it or not. Part of our strength comes from admitting we need help. It takes someone of a firm and resolute character to come to the realisation that their mental health is having a marked effect on their life. To take medication when there is still shame and stigma surrounding it proves we can withstand the negativity.

Of course, the choice is there for us. I fully support and understand when someone doesn’t want to take medication. Therapy and lifestyle changes is enough for some. What I disagree with is being shamed or not seen as being as strong as these individuals. I am. Every evening when I take those tablets I’m not seeing them as a sign of weakness. I haven’t failed. With them I’ve achieved so much and become a healthier version of myself.

How to Help Someone When They’re Hearing Voices

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I have bipolar disorder and along with this psychosis. This means I hear voices that aren’t really there. Sometimes the voices are comforting, and urge me on to try new things and motivate me. At other times they can be malicious and terrifying, criticising me and goading me to hurt myself.  I talk about my experiences in the post Doubting Myself – Hearing Voices and in this post Hearing Voices During A Manic Episode I also describe how I was in denial for many years in this post ‘I thought the voices were normal.’ Realising I had Psychosis To learn more, check out MIND Their website is full of information about hearing voices and psychosis in general.

So how can you help me and others like me when we are hearing voices? 

It might seem daunting, but there are simple things you can do to help someone when they’re struggling with voices. Sometimes all I need is for someone to just to sit and be with me. If I don’t know you I’m not expecting you to have a full on conversation with me. I just need someone there so I’m not feeling alone. When you hear voices you feel out of touch with reality. It is an intense and genuinely scary experience. You’re not always sure what’s real and what isn’t. It creates a surge of fear and anxiety. So to counter this having someone sit with me helps to ground me. It’s a really simple act that can make a huge difference. Helping someone doesn’t have to be complicated. You don’t need to fix them or make the voices stop.

Don’t panic.

If I said to you I’m struggling with hearing voices, don’t visibly panic. If you’re panicking, it will make me panic, and I’m already struggling with the anxiety of what is going on in my head. I’ve told people before when I’ve been hearing voices, and I can almost see the gears going into overdrive in their head. Like I’ve already said, you don’t need all the answers. If you’re worrying about what you can do; ask. It’s far more helpful for someone to ask me what they can do – rather than sitting panicking and stressing out.

What can you say to help?

Talk to me about anything. Talk to me about the surroundings. Tell me your life story. Tell me how your day is going. Tell me what you’re up to tonight. Anything. It can be as mundane or as interesting as you’d like. It can be the first thing that pops into your head. Treat me normally, and if you know me treat me as you usually would.  I want to be distracted from the voices. Distraction is key. Put yourself in my shoes and think how you would like to be treated.

What do I do to help myself?

When I’m low and the voices are vicious and scaring me, what I try to do is rationalise it in my head. I think yes it’s scary, but I know what it is. The experience feels very real but it can’t do anything to me, the voices can’t hurt me. It’s like if someone was having a panic attack. They’re not going to die. In the same way I know nothing bad is going to happen to me.

Often I hear voices at home, when I’m alone. I will try and have a conversation with someone – I’ll call a friend and ask them to talk to me. Again it’s all about distraction. If no one is available I’ll do something creative. Painting, drawing and writing all help to ground me and distract from what I’m hearing.

Painting ‘Bear Repeat’ by Anne Wilson

Breaking the Silence

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Too many people with mental illness are silent. Silent with friends and family, Silent at work. Silent from their doctors, silent with themselves. Breaking that silence can feel like the hardest thing in the world.

We worry about what others will think of us, and that they will judge us. Maybe they’ll think we’re attention seeking, exaggerating, or crazy. What if they recoil from us or decide they can’t deal with it. We worry breaking the silence will make work life difficult, or even cost us our job. Maybe our doctor won’t believe us, or won’t have any answers. We worry that being truly honest with ourselves will mean we will have to face the reality of our illness. All of this circles our minds and paralyses us from taking action to help ourselves and to reach out for help and support.

It all comes down to stigma and discrimination. It is such a huge issue for people with mental illness. We fear the repercussions of breaking our silence. If we start talking and sharing collectively, we can hold each other up and give ourselves the confidence to use our voices.

When you do break the silence it can be freeing and empowering. To finally share your story with someone, even if it’s just one person, can come as a huge relief. Sharing your struggles lifts a weight off your shoulders and has a positive affect that staying silent will never do. I do this here on this blog, and share my experiences of bipolar, psychosis and bulimia. I first started journalling my experiences in 2012, but only shared with family and friends. Last February, I made the decision to go further and set up this blog and to be more active about it on social media. Now I feel supported by a larger community, of people I have never even met. I have received messages from across the world of support, and others asking for advice.

In most situations, people are generally supportive. However, this isn’t always the case and we have to be prepared for this. It can be deeply hurtful when someone doesn’t understand, or refuses to make an effort to. If we feel capable, the best thing we can do is try and inform and educate. Stigma often comes from ignorance or a lack of information. We need to make sure we provide people with the right information so that they can make informed opinions. This can be from sharing your story, or from highlighting resources from charities such as MIND and Time To Change

Not everyone with mental illness feels capable of being open. We share our stories to varying degrees, and even if we tell only the one person closest to us, that we can confide in, that’s ok. We don’t all need to put ourselves ‘out there.’ We’re all different, despite our shared illnesses. Breaking the silence means talking as much or as little as you want to. It isn’t a competition and no-one should feel pressured to tell everyone they meet about their illness. Do what you can, and you’ll find it makes a difference to not only your life, but to the people you care about.

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The Warning signs of a Depressive Episode

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Depression can be sneaky and creep up on you when you least expect it. I find the warning signs can happen either all at once, quickly and anticipated, or more slowly, like the depression is stalking me. I’ve written in detail about depression in my post 101 Things No one Tells You About Severe Depression This list is not exhaustive, and the warning signs can differ from person to person.

Feeling tired all the time. I will feel exhausted and sleep will no longer feel refreshing. I can sleep during the day; something I hardly ever do when I’m stable. I will constantly feel tired and all I will want to do is to go to bed.

Irritability. The smallest annoyance will have me losing my temper. Someone eating too loudly, people walking slowly in the street, not being able to find my hairbrush are all examples that will leave me seething and ready to snap.

Lack of concentration. I love to write, read and play video games, but when depression is near, I can’t concentrate. My world feels fuzzy with blurred edges. I find my mind wandering, often to darker thoughts, or simply zoning out.

Increase/decrease in appetite. My appetite will change completely. I’ll either want to eat all the time and find food comforting, or I’ll feel nauseous at the idea of eating.

Low self esteem. I’ll start thinking less of myself. I’ll look at my body and think I’m disgusting. I’ll look at my work and think it’s awful and want to rip everything up and start over.

Socialising less I enjoy going out and socialising, so it’s blatantly obvious that something is wrong when I turn down an invitation, or don’t turn up. I’ll feel a knot in the pit of my stomach at the idea of seeing friends.

No motivation My drive and positivity will go out the window. All I want to do is curl up on the sofa and watch tv, constantly. This isn’t just an ‘off’ day, this is when my motivation will disappear completely for weeks.

No longer enjoy my favourite activities As with a lack of concentration, my hobbies that once gave me pleasure and filled me with happiness, no longer do. Every suggestion made I turn down, not able to see the fun in anything.

As I don’t always realise I’m becoming depressed, I rely on my partner and close family and friends to keep an eye out for these warning signs. I’m much better than I used to be at spotting a change in my mood toward the low side, but I still occasionally miss a change in behaviour that’s glaringly obvious. Knowing these signs has made me feel more in control of my mental illness. I can act or make a change before the depression becomes severe and I find myself in crisis. There isn’t always an answer, but knowing I’m going to be ill means I can prepare for it. I let people close to me know how I’m feeling and I talk to my GP or psychiatrist. I’ve also written about mania in my post The Warning Signs of a Manic Episode

If you’re worried that you may be depressed, please make an appointment to see your GP. Many doctors surgeries offer double appointments, of 20 minutes rather than 10, so you can have more time to explain how you’re feeling and discuss options with your doctor. I always make double appointments when I’m struggling with depression, as I find it more difficult than I normally do to express how I’m feeling, and to get my point of view across. It means you won’t feel rushed and pressured to explain everything.

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Mental Illness and The Sometimes I Can, Sometimes I Can’t, High/Low Functioning Distinction

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The first time I heard the terms ‘high functioning’ and ‘low functioning’ was when I first applied for benefits a few years ago. This is the idea that although you have a disability, such as a mental illness, you’re either able or not able to look after yourself and live your daily life. I had never looked at my illness in this way before. My illness fluctuates weekly, sometimes even daily, and this has a direct effect on what my capabilities are. I can’t predict when I’m going to be low functioning, as much as anyone doesn’t know when they are going to have an accident and break their leg. The ESA and PIP system is based on a misunderstanding of what it means to be disabled. This callous lack of an attempt to understand is costing lives. The major problem here is how people are distinguished between high functioning and low functioning. The reality is for many disabled people, functioning changes across different days and across different activities.

I have bipolar. Some days I am high functioning. I can write, go out and see friends, cook, look after myself and do all the things that I want to be able to do. On other days I am low functioning. I may be manic where I’m angry and irrational, acting impulsively and a danger to myself. I may be depressed and unable to get out of bed, unable to get dressed, and suicidal. At all of these times I am ill, even if I seem as high functioning.

Another problem with the distinction between high/low functioning is everyone has areas of life they function better in. Some are more academic, some are more creative, others are better at socialising. It’s the same for people with mental health problems. Some people have a job, but their home life suffers. They can’t go out and socialise or clean the house. Other people might find socialising easy and not stressful but find employment too much to handle and exhausting.

Right now, I can’t work. The stress related to it and the physical and mental exertion triggers me into a manic or depressive episode. This has been the case for years. I tried to carry on working but the toll it took on my mental health left me repeatedly off sick and left me unable to do anything apart from work and sleep.  On the other hand I can socialise without any problems. I have never found going out with my partner for a drink or seeing friends as stressful. People will see me on a night out and have no idea that I have a a serious mental illness.

Disabilities take their toll, but it manifests in so many ways. Functioning varies across time, situations and people. There is no low functioning or high functioning, there is simply people. People who are struggling everyday to live with and manage mental illness. Having to distinguish this at a PIP or ESA assessment is deeply frustrating and is often misunderstood by the assessor. They only see that you are capable of cooking a meal for yourself, or taking a journey on public transport on your own. They don’t take into account that these ‘good’ days can be few and far between. Months can go by before you feel well enough to complete simple tasks that people take for granted.

It’s not just the benefits system that uses this against the disabled. Many workplaces and individuals also only see what you can do, and not what’s realistic. I have to manage my mental illness, and that means I often have to say no. No I can’t work eight shifts in a row, no I can’t meet up this weekend. It can cause a strain on relationships and adds to the stress already related to being ill.

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Stigma in the Workplace

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The nature of having bipolar has meant I’ve had quite a few, varied jobs. I’ve worked in retail, childcare and for the local council. One thing each of these jobs has in common is whilst there, I’ve experienced mental health stigma.

Whilst working in childcare, I was a supervisor of a team in charge of a room of toddlers.    I had been struggling with my mental health and at that point didn’t have a diagnosis of bipolar. I had been what I now know is manic and hadn’t been sleeping. My mood came crashing down and I was emotionally and physically exhausted. I was late for work one day and was brought in for a meeting with the manager and owner. Earlier in the year I’d had my probationary period extended because of the amount of sick days I’d taken. I was convinced I was about to be sacked. I decided to be honest with them and explained that I was depressed. They told me I couldn’t work that day and sent me home because,

“You would be a danger to the children.”

I couldn’t return until I was “No longer depressed.”

When I worked for the local council as a family worker, I again faced discrimination. Again I was having difficulties with my mental health and had to take time off. I felt that I wasn’t able to properly cope with adult life, that I was a failure. A certain colleague would make snide remarks about my time off, saying,

“At least I’m actually here all the time, not like some people.” Or,

“Some people are just not able to cope with stress as well as others.”

He would look at me directly as he made these comments, a smirk on his face.

I applied for a job at an NHS day nursery. The interview went well and I was offered the job, subject to references. I was ecstatic and went out and celebrated with my boyfriend. A few days later I received a phone call from the manager of the nursery. The first thing she said in an abrupt, unsettling tone,

“Why didn’t you tell me?”

Naturally I was confused and asked what she meant.

“Your sickness record is very poor, you should have explained this at interview.”

I knew there was nothing I could say, and my heart sank. I didn’t get the job. At the time I had no diagnosis so felt I couldn’t pursue them for being discriminatory. To me, I was simply a broken person.

Near the end of last year I had to take time off work because I was struggling with a deep depression. When I returned the manager was acting very strangely. He hardly spoke to me and didn’t ask me how I was feeling or welcomed me back. I had a conversation with another member of staff who I found out also had Bipolar. It felt good to know I wasn’t alone at work. However, I was given a word of warning.

“Just be careful, I was nearly sacked because of my Bipolar.” I was shocked and concerned.

“What! Why?”

“The manager doesn’t get it. I was told to cheer up because I was bringing the rest of the team down. We had a massive argument and he nearly fired me.”

I instantly felt worried that I would have to paint a mask on at work every time I felt unwell. I then understood the managers reaction when I returned to work. I knew that Bipolar was not seen as a legitimate illness and I was deemed a nuisance for suffering from it.

These are just a few examples of the many times I’ve faced stigma at work. If I wrote down every time someone made a passing comment, or a manager shouted down the phone at me for being ill when I’d called in sick, this would be a mountain of a blog post.

So what can we do? 

It feels impossible at the time to do anything when you’re facing stigma at work, but there are options.

If it’s a colleague, speak to them first, if you can. They might not realise you have a mental health condition or have little understanding of what it’s like to live with mental illness. I know this is not always an option, I have been there myself, so I would speak to a manager, Many organisations have a mental health policy or a policy on bullying and harassment. If you are a member of a union, they can give advice and support. If it’s your employer discriminating against you, they can advise what your rights are and what to do next.

The Equality Act 2010 protects anyone being discriminated against because of their age, gender, race or disability. According to Time To Change, “To get protection under the Equality Act, you have to show that your mental health problem is a disability (that it has a substantial, adverse, and long term effect on your normal day-to-day activities). The law covers you during recruitment, employment and if you are being dismissed for any reason, including redundancy. Employers must make reasonable adjustments to work practices, and provide other aids and adaptations, for disabled employees.”

If you are being treated unfairly at work because of your mental health condition, this could be discrimination and against the law. The Mind website has extensive information about your rights at work and what to do if you are being discriminated against. They also provide legal information and general advice on mental health related law.

This is all information I wish someone had given me ten years ago. I often felt alone and isolated at work because of my mental illness, not realising I could encourage change in the workplace or take action against those that hurt me

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I’ll Keep Talking About Psychosis Whether It’s Relatable Or Not

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I suffer from psychosis. I have auditory hallucinations, so I hear voices, either when I’m manic or depressed. It took me a long time, over a decade in fact, to face up to this reality. I was in denial that I heard voices, and convinced myself it was something everyone experienced. Now, I’m open about my experiences. I’ll talk to family and friends about it, and I can even joke about some of the stranger sounds and voices I’ve heard. I have shared my story online, notably here on my blog. You can read more about how ‘I thought the voices were normal.’ Realising I had Psychosis and Doubting Myself – Hearing Voices

It’s not an easy subject to talk about. Even starting a conversation about it can seem unbearably daunting at times. It can feel jarring to suddenly start talking about it, as it can seem like such a alien topic for people who haven’t experienced it. I have to judge the atmosphere and the mood of the person I’m talking to. I shouldn’t have to, but that is the reality. If striking up a conversation about psychosis is badly timed it can shock and jolt a person and yes, unfortunately, distance them from you. Sometimes the reaction is simply silence. Sometimes you can see the fear of what to say next in a persons eyes. Sometimes they ignore what you’ve said and start on another topic.

It’s all about really, truthfully communicating and educating others. If I can sense how uncomfortable someone is, I’ll ask them,

“What is it about psychosis that scares you?” Or,

“Why does this conversation make you feel uncomfortable?”

If I didn’t ask, and just let it slide and quickly moved the conversation on, I’d never know the answer. People need to understand that having psychosis doesn’t make you an insane, crazed killer. It doesn’t change you as a person. I’m still the same person as before anyone realised I heard voices. Most of the time confronting someone with these questions is positive. They know me, and want to hear me out. I’ll explain when it happens and what it means for me. For instance, once when I was manic I could hear voices coming from my phone. They were speaking loudly and animatedly, like they were at a party. Initially I thought somehow I had rung someone by accident, but looking at my phone, there was no call in place. It went on for hours whilst I tried to distract myself by watching tv. Every time I turned the volume up the voices matched it. I was already feeling irritable and this added to my frustration. I remember being beyond relieved when the voices finally stopped.

I’ll be completely honest here; it’s not a relatable subject. It can be a curiosity for others, or they can try and sympathise, but unless they have experienced it, they will never completely understand. The best I can do is to keep talking and sharing my experiences. I want to try and normalise it as a subject, so people no longer feel afraid to talk about it. I know that not as many people will read this than if it was a post about depression or anxiety, but that’s ok. Like I’ve said, it’s just not as relatable. People don’t have a frame of reference for it.

Educating others is key. The stigma attached to psychosis left me paralysed with fear and terrified for over a decade before I sought out help and support. I’m not afraid anymore and will continue to spread awareness.