Living With Psychosis – How Your Language Can Hurt

If you throw around the words ‘psychotic’ or ‘delusional’ to describe someone you disagree with, or roll it out when you’ve been hurt or upset – then you can’t call yourself a mental health advocate, or say that you care about mental health. There, I’ve said it.

People have said to me, “But surely delusional doesn’t just have a pathological meaning?” My answer to that is it depends on the context. I think generally people know what they’re insinuating when they call someone delusional. They know exactly what they’re doing, what they mean, and the reaction they’re trying to invoke. I have delusional thinking and I find it offensive when someone uses it as a slur. Delusional, and the word psychotic, are not synonymous with badness, which is often how they are used. The English language is huge and I don’t think it’s much of a stretch to change up your vocabulary!

The misuse use of these words is one of those things about mental illness that just doesn’t stick when you talk about it. And I’m majorly fed up with explaining it. People either don’t want to change the language they use, don’t see it’s a problem, or simply forget the point, and start using the words all over again. I see or hear the word psychotic misused pretty much everyday. It’s either on social media, in tv or film. So really, it’s EVERYWHERE. It’s exhausting to keep calling it out, or getting annoyed at a show or a movie when they use it in the wrong context.

I’ve had people say to me “C’mon, it’s not a big deal, it’s just a word!” That’s your opinion, but it’s important to listen to the opinion of people that are actually psychotic. That live with the condition/symptom and have to hear the word being used negatively every single day. Imagine you’ve been diagnosed with psychosis. The word psychotic has become a part of your life, whether you want it to or not. You know the feeling of dread when you start to hear, see or feel things that aren’t really there. You remember the extreme paranoia or delusions of grandeur that come with delusional thinking. You’re slowly learning to manage it, but it’s terrifying. It’s confusing and disorientating. It makes you feel extremely vulnerable. You feel untethered from reality and like there is no safety net to catch you. Because of all of this, you’re at a higher risk when you’re ill of being the victim of crime than the general population. Then imagine a friend has had a bad break up. They suddenly start describing their ex to you as a “psychotic nazi.” Later that day you find a show you think you’ll like and put it on the telly. The villain, the character the audience is supposed to hate, is described as psychotic. The next day, a family member rants to you about a politician. They tell you that they’re “evil, dangerous, psychotic.” And it continues like this, with people all around you casually throwing the word around – not once thinking about the impact it will have on you.

All I’m asking is to think before you speak. It all adds up. You might think it’s not a big deal when you say it, but hearing it constantly misused takes it’s toll. If you live with psychosis it warps the way you think about yourself. You start questioning, “Am I a bad person?” “Am I dangerous when I’m ill?” Because the word has been given a different meaning by the people around you and in society in general. It’s so commonly misused you start to doubt whether the way you use the word is right. It grinds you down, it makes you feel like you’re broken and people see you as dangerous.

They’re not ‘just words’ they carry venom that poisons people that are already vulnerable. It stops people from accessing care and support because they don’t want the label. It isolates people that already feel alone and misunderstood.

Stop Romanticising Mental Illness

Mental illness should never be something to aspire to. Making it seem cute, romantic, or beautiful distorts what it actually is; scary, lonely and ugly.

When I see someone in the public eye talk about how an illness is beautiful, or whatever other positive word they want to use, it cultivates the idea that mental illness is romantic; that it’s a quirk, and something that makes you special and unique. At a time when many people are struggling, or having setbacks with the management of mental illness, it devalues the struggle of people living with mental illness. How are people who live with mental illness meant to be taken seriously when people keep romanticising it? There is so much awareness trying to be raised for mental illness, important campaigns, and all this does is undo all of that.

I’ve had to deal with this many times. I remember being at a party, where a group I didn’t know too well, were discussing a friend, who believed she had bipolar disorder. They were making fun of her, and throwing around comments like, “Everyone has something these days” and “Yeah, bipolar is is just the fashionable ‘in’ thing to have.” and another, “People just want to be different, and bipolar makes you look quirky.” There were nods of agreement. The very idea makes my blood boil. I decided it was time to speak up, and educate them. I said,

“I have Bipolar. It took 12 years for me to be diagnosed. It’s not fashionable, in fact it’s terrifying and debilitating.”

I went onto to tell them about the blog I wrote about Bipolar, and recommend some websites and books that they should take a look at. There’s still a long way to go in educating people about Bipolar. People are quick to judge and repeat stigmatising myths they’ve heard. Not everyone is confident enough to call people out. It makes my heart race when I do. This compounds the problem, when people’s views go unchallenged. If you can point people in the right direction to mental health campaigns and charities, it can make a big difference to their point of view.

To me, Bipolar will never be fashionable. It’s a life long severe mental illness that takes determination to live with and even more work and drive to find stability. People seem to hold onto the idea that bipolar can make you more interesting; that others will see you as edgy and vibrant, or brooding and mysterious. It’s harmful to those who are suffering and trying to reach or maintain stability.

If you can look at your journey and take some positivity from it, that’s great. it’s important to understand and learn from our experiences. There is a line though, and romanticising an illness will never be ok. It’s damaging to people that struggle everyday. Language is a powerful tool, and we need to think about how we describe mental illness; will it cause someone to relapse if I say this? Will my words make someone feel like they’re not trying hard enough? That’s the crux of it; saying mental illness is fashionable, beautiful, a quirky, cute trait to aspire to, tells people that have a negative, brutal, unrelentingly bad experience that if only they tried harder, then they could see it that way too. Mental illness just doesn’t work that way. How about praising people for getting through each day, for still being here? How about being there and listening to a friend who’s struggling? How about actively being part of the change in perceptions of mental illness? That’s something we should all aspire to.

No, that person you disagree with isn’t delusional

As someone that experiences actual delusional thinking, it’s difficult to hear people using the word to describe someone they disagree with. By using this term all you’re doing is insinuating our symptoms are synonymous with badness.

I live with Bipolar disorder, with psychotic symptoms. When I have an episode of bipolar mania, I might become delusional. This means I often experience delusions of grandeur. I’ve experienced this since my late teens, with it first surfacing at University. I wasn’t diagnosed until my mid twenties. Delusional thinking means I lose touch with reality. A recurring belief I’ve had is that I’m not only invincible, but that I’m incredibly important. I’ll believe it’s impossible for me to be hurt by anything or anyone. I’ll also think that this power extends to people keeping me out of harms way. It doesn’t make sense and it’s not supposed to! In the moment though I’m convinced I’m right, and any evidence to the contrary wouldn’t change my mind. Delusional thinking has caused me to be run over. I would just walk out into busy roads without looking, believing everything would be ok. Luckily I came away with just bruises, which further fuelled the delusions. I’ve also be in quite a serious car crash because I decided I could drive in the middle of the road, because cars would move out of my way. Again, somehow, no one was hurt.

With elections, Brexit and Trump, I’ve heard more and more people use the word as a slur. I’ve even had someone from my extended family use it, when they know I suffer with delusions. When opposing sides are arguing, or even just having a debate on an issue, the go to word seems to be ‘delusional’. I’ve heard phrases in the media, by experts in their field, by politicians in interviews all along the lines of;

“This policy is delusional”

“What they’re suggesting is delusional.”

“This delusion will harm the public/economy/our country etc.

It’s insensitive, lazy and a gross misuse of the word. “But delusional means different things!” It may do, but it’s obvious what meaning people are trying to convey when they call someone delusional when they deeply disagree with someone. It’s hard enough trying to explain what delusions are to family and friends, without them constantly hearing the word in a negative light on the news, on social media and by the people running our country. The more people hear the word used in this way, the more likely they are to use it in their day to day language.

Why does it matter what words people use? It’s just a word isn’t it? Well, it portrays delusions, and the people that experience them, as bad. It fuels the idea that people that experience delusions are dangerous. It’s deeply hurtful to the individuals that experience them. We’re human beings and are affected by an illness that can completely overwhelm us, cause damage to our relationships and our lives. We deserve to be listened to when we say a word used in this negative context is hurtful.

Changing up your vocabulary isn’t difficult. Try using words to convey how you feel about what someone has suggested, such as; unrealistic, fantasy, pipe dream, confused, wrong, ignorant etc. Think about that difference of opinion, and the emotion or belief that first pops into your head, and use that word.

I’ve heard people saying that awareness raising has had its moment; that people understand what depression and anxiety is now. I think the way delusional is used shows that stigma, and a lack of knowledge and understanding is still rife when it comes to certain mental illnesses. The less palatable it seems, the more stigma exists.

Before you say it, think about the person behind the word. Think about the ordinary person, like me, who experiences delusions. Think about how you would feel if something you live with was thrown around to attack, discredit, and insinuate someone is bad and cruel. I don’t think you’d use the word in the same way again.

I’m Writing A Book!

Yep, the secret is out! I’ve been offered a publishing contract with Jessica Kingsley Publishers to write a book about bipolar disorder.

The book is going to be a practical guide to bipolar disorder. I’ll offer tips and advice on how to navigate daily life and how to manage symptoms. All of this will be alongside my own experiences of living with the condition!

Now I need to just write the bloody thing! You can send me coffee to fuel me whilst I’m busy working on the manuscript over Xmas and into 2020!

And it all started here, on this blog. I’m truly grateful for each and every one of you that takes the time to read my posts. I’ve thought about giving up writing about mental health, and bipolar in particular numerous times, but the support I have online is incredible and has kept me going, so thank you!

It’s made me reflective and as we head into a new decade, I couldn’t think of a better end to this one. In 2010 I was a mess. I was constantly manic or depressed, there was never any respite from the chaos in my mind. It left me exhausted and physically ill. In mid 2012 I had a breakdown and came close to losing everything. I lost my job, and somehow my partner Jimi stuck with me, supported and cared for me, even though I was terrified he would leave.

Then I was diagnosed with bipolar type 1, but believe me, that wasn’t the end of what became the most gruelling, challenging decade. I was out of work for years, and I had to redefine who I was as a person. My career had been my life, it was me. I went on benefits, and was in a constant state of worry over my finances. I had to find a new way of living my life, a healthier way. It took years before I found medication that worked for me. A combination that didn’t have awful side effects.

2019 has been a better year. I took a huge leap and started working as a freelance writer. I write about mental health, and I’m passionate and committed to my job. I’ve finally felt in control of bipolar, rather than it controlling every decision I make. Now, at the end the year, I have a book deal. I’ve come so far and I’m so proud of myself; something I find difficult to do and admit.

The me of 2010 would never have believed what I’m doing now. She was too focused on getting through the next day, the next hour. But I made it through, I fought my way through this decade.

I can’t wait to share the book with you all. For now, I’ll be typing away on the manuscript, but I’ll still be writing here on the blog when I can!

Why I’m anxious about seeing a Doctor

I’ve been putting off seeing my doctor for ages.

Why?

I’m afraid. Afraid that they won’t be able to help me. That they’ll fob me off with a ‘just keep doing what you’re doing’ response. Anxious that they’ll want to change my medication. Again.

I’ve had a difficult year with medical professionals. Long story short, I was discharged whilst feeling suicidal. I made an official complaint to the hospital, and they investigated. The outcome; the psychiatrist denied his behaviour and that I agreed and was willing to be discharged. So he lied, to save himself. I was left without support from mental health services and had to fend for myself. I carried myself through that bout of depression and I’m still here. But that’s not the point. I felt let down, isolated, alone, and incredibly fearful for the future.

This year has been tough on my mental health. I decided to go full time as a freelance writer, giving up the security of a regular wage. Mental illness has kicked my arse. A few months ago I was depressed, and suffering from tactile hallucinations for the first time. I was scared, terrified of these crawling sensations on my skin. It meant I couldn’t sleep. Insomnia is painful. It seeps through your very being and leaves you hollow. I was sleeping maybe 2 -3 hours a night. For months. I tried everything I could think of before heading to the doctors. With the help of medication, I could sleep again. The hallucinations dissipated and the relief washed over me. I felt like I could breathe again.

Despite all this, I can’t bring myself to talk about mental illness with a doctor.

I didn’t mention the hallucinations to my GP (general practitioner). I knew they would refer me to mental health services. The idea of this fills me with anxiety. The number one thought that goes through my head is,

“What if I end up with my last psychiatrist?” The same one I made an official complaint against. Surely there would be some form of animosity from them. I’d be on edge and be distrustful of their competency. So then I’d have to explain this whole story to my GP, before they referred me. I might have to wait even longer than usual to see a different psychiatrist. What if they are the only one available? What would I do? I can’t afford to go private. There are so many questions going through my head, and the process just makes my head ache, and fills me with anxiety.

I know I need to see a doctor. I’m experiencing some weird symptoms that I think might be connected to one of my medications. I don’t want to have to change meds. On the whole, they’re doing a good job. As long as I keep stress in check, they work and keep me stable. It took years to find the right combination and I’m so afraid of losing this balance I’ve achieved.

Again, I need to see a doctor. There’s no way I want insomnia to come back. I’m scared of psychosis and how it could manifest. I need to work through these feelings and book an appointment when I feel brave enough.

The ‘Mental Health Conversation’ Is Not Boring – And Still Relevant

I’ve seen a shift recently in how people view advocacy and raising awareness around mental health and mental illness. To some it’s now ‘boring’ or no longer necessary or needed. I think they’re wrong.

It should be obvious to anyone in the UK that mental health services are underfunded. Waiting times are atrociously long and there is still is no parity of esteem (when mental health is given equal priority to physical health) in the NHS. Understaffed services mean staff are stressed and over worked. Patients can’t be admitted when they’re seriously ill because of a lack of beds. Young people are being sent hundreds of miles away from their families for care. Suicide rates have gone up and are at the highest since 2002. The problems go on and on. It’s vital we talk about this and make change happen by campaigning, writing to our MP’s and making our voices heard when there is a general election.

Some people are making the case for this being the only issue, or at least the main topic, in the mental health conversation. To say we are at saturation point of awareness coverage, or we need to move on, I think underestimates the stigma many individuals still face. It’s almost naive and I think sometimes comes from a position of privilege. Some mental illnesses are talked about more than others. They’re more accessible, easier to digest and people to relate to. Certain groups are more willing to listen, accept and support someone with a mental illness. When you mix in other prejudices that people cope with (racism, homophobia, transphobia, for instance) which exacerbate mental ill health, these issues need to be addressed.

It worries me that with this attitude, there will be instead a shift in focus in the media, to another cause or issue that feels more relevant, or needs addressing. Our valid concerns will be less in the public eye. Changing public perceptions of mental illness shows the public how serious these conditions are and why it’s so important that we can all access quality, timely care to mental health services when we need it. Awareness educates and informs, and sways public opinion to standing up for our cause.

We often talk about reducing stigma/raising awareness or the need for more funding for mental health services, but why are they seen as mutually exclusive? Surely we can talk about both issues and still help to create change. This conversation as so many have labelled it, is far reaching and means different things to different people. So what do we actually mean when we say ‘mental health’ ?

People still don’t know how to talk to someone who is experiencing psychosis. They’re still scared and uncomfortable around people with schizophrenia. They think bipolar is just being happy or sad. They still believe people with BPD are manipulative. That PTSD only happens to soldiers. People still describe OCD as being overly tidy. They still think people talking about depression and anxiety are attention seeking. So can anyone please tell me the conversation is no longer needed?

To My Online World, And How You’ve Helped Me Grow

TW: Suicidal ideation

The period between 2003 – 2013 was a whirlwind of changes for me. The catalyst for these changes came from my online world. A place that held me safely in it’s hands. It was a place without judgement and a community full of compassionate individuals. I could feel the warmth and strength of genuine friendship reverberate around me. I felt like I’d finally found my family.

Where did this vulnerability, this raw honesty come from? The internet was full of the outsiders. Individuals trying to find their people.

In real life I was struggling. I felt like an outcast. I was trying to discover who I was and I felt deeply uncomfortable in myself. I’d never found my ‘tribe’ at school, or even when I started University in 2004. I was constantly called ‘weirdo’, ‘freak’, ‘alien’ during my time at school. I thought University would be a positive change, but I was so very wrong. I found myself surrounded by people I had little in common with. It caused me to modify my behaviour; the way I talked, the music I listened to, the shows I watched, so I could fit in. There was an intense, feverish need to belong. I wrongly thought I was the one that needed to change. That my differences were holding me back. I didn’t have anyone in my life urging me to celebrate them.

University life ended abruptly for me. I didn’t know at the time, but I was struggling with bipolar disorder. For the first term I’d been manic, euphoric and full of an insatiable energy. I fitted in with others in my halls of residence because I was the life of the party. By the next term I was in a downward spiral into depression. I realised the friendships I’d made were based on going out to bars and clubs and my unceasing hyperactivity. I had nothing else in common with them. Feeling alone and desperate, I dropped out.

Going to Uni meant owning my first laptop. At home we’d had a family desktop computer. It was so ancient that my teachers would ask why I was writing essays on a typewriter. I’d missed out on msn messenger. Having one computer between six people as a teenager meant battling with my brothers’ to use it. Homework would have to come first and then there was my Dad who was also studying for a degree. My best friend lived five minutes away so if I wanted to chat, I’d just go over to hers. Now she’d left for University and I was back at my family home. My deepest connection to someone outside my immediate family had disappeared. I felt lost without her.

Having my own laptop coincided with me finding my independence. I didn’t discover the online world until I’d dropped out of Uni. I was a huge anime fan and in my search for original Japanese versions I stumbled upon the then humble world of internet forums. These were the days of hours of constant buffering. An online video could take half an hour or more to buffer enough to make it watchable. Infuriating as it was, it meant my attention was drawn to the forums in the sidebar of these sites. I felt awkward introducing myself to strangers on the internet, but I was bored and wanted to waste some time whilst the wheel of death spun round in front of the video. Greetings started pinging back. I felt a rush of excitement that people were acknowledging me.

I started paying more interest in the content. It wasn’t just people discussing anime. They were talking about their lives, their hopes for the future, their worries and doubts. These were people that were showing a genuine interest in me. Collectively, we were lonely. I had always been made fun of for my passions. I listened to under the radar indie, electronica, house, techno and hip hop music. An eclectic mix that people in my real life just didn’t get. Then I was also a nerd who watched Star Trek and read graphic novels and manga. I played video games and was obsessed with Nintendo and the Zelda games. Now I’d found a group of people that had had the same experiences and liked what I liked. A group that were smart, funny and lovable.

Names didn’t matter in the forums. Your age, gender, ethnicity wasn’t important. What was important was creating meaningful connections and supporting each other. If I’d had a bad day, I’d go straight on the forum to vent my frustration. It didn’t feel like I was shouting into the void.

The first people I came out as bisexual to were my online friends. The connections we’d forged meant I was comfortable enough to tell them. It was the most vulnerable I’d ever made myself, but I wasn’t afraid. I was met with a pure acceptance. These were no longer just strangers, no longer just people, but my close friends. Coming out online to this small, tightly bounded group made me feel safe and secure. One person in particular was almost deafening in their support. She called herself Mel9000, and we’d grown close. About a week later she made an unusually tentative message. She’d found the courage to tell us all she was gay.

This brings me back to why we felt we could be so open online. These were people that didn’t feel accepted, because of their lifestyle, because of their idiosyncrasies. The internet opened up the world to us; we could find people that we clicked with instantly. Many of us felt socially isolated in real life. Everyone else seemed to connect and create friendships so seamlessly. I could hide who I was and put on an act to fit in, but many of the people I met online either wouldn’t do this, or had no idea how to. I wouldn’t say I was lucky to be able to put up a facade and make real life friends. In fact, it made me feel more alone and isolated.

My family didn’t understand how I could spend hours alone in my room. When in fact, I was surrounded by friendly, supportive people; my online family. Mel and mines relationship had grown. We were speaking to each other privately away from the forums. We realised we both lived in the UK, living a few hundred miles apart. Excitedly we realised we could meet, out in the real world. We met and started a relationship. It felt we already knew each other, we had overshared so much of ourselves online.

The most valuable gifts the internet gave me were of self belief. That being weird was an asset. I could use it to propel my creativity forward into new and exciting places. That there were people that would accept me out there in the real world, I just had to work harder to find them, and I did.

The internet began to change. The forums I’d grown so attached to started petering out. But then, I hadn’t been paying them as much attention. I also changed. I met my now husband through online dating. He sent me a ‘wink.’ I brazenly sent back an essay about myself, with a touch of oversharing thrown in. It obviously worked and we’ve now been together for coming up to ten years. The forums had shown me that the internet could bring individuals together, that otherwise would never have met. As we got to know each other, we realised we’d been living in the same town, and going to the same gigs. I’d been up at the front dancing away, he’d been standing shyly at the back. It felt so strange to realise someone I had such a powerful connection with had over the years been standing just meters away from me at music festivals and at bars. To be in so close a proximity to someone but never speak, only to meet online and fall in love shows the power of the internet.

After over a decade of struggling to understand my constantly extreme mood swings and bizarre behaviour, I was diagnosed with Bipolar 1 and Psychosis. It whipped up an array of emotions for me; of a deep guttural anger, a sense of purest relief and of almost overwhelming fear. This was in 2012. I doubt without the forums I was so attached to I would have survived to receive a diagnosis. I never felt judged for sharing my feelings.

I’m still deeply connected to my online world and the connections I continue to create. There’s been this refocus in my online life in the past three years, to twitter and the mental health community that resides there. Twitter can be an endlessly supportive place, it’s just the way you use it that’s important. I’ve managed to find yet again a group of people who I can rely on, that I can lean on when life gets tough. People will share the most intimate thoughts about their mental health which takes serious guts. Most of the time we’re met with love and support, but every now again a troll finds it’s way through. This for me is the major difference in how the internet used to be. It has harsher edges now and it’s easier to find yourself getting cut. It feels more open and although I embrace the fact that more and more people have access to the internet, it can easily lead to confrontation.

I look at it this way; it’s an opportunity to educate and inform someone who has lived life from an entirely different perspective. Whether they are willing to learn and grow from my experiences that I share online, is entirely up to them. I believe by utilising this perspective the internet could become a better place to be in. We need to relearn that we can’t change people. We certainly can’t force that change by shouting and screaming our opinions at one another. We can use the passion for connection and understanding from that more innocent time on the internet. We are capable of putting our thoughts forward with both passion and kindness. There is growth for more genuine acts of listening and accepting difference. In the mental health community on twitter is where I’m seeing a burgeoning sense of togetherness. I feel like part of a group of like minded people again.

I felt pretty lost after my diagnosis. In fact, I became suicidal. I remember I had been sitting at the table crying for what seemed like hours. The thoughts circling my mind were becoming too painful. With conviction, I walked to the kitchen and opened the drawer where my pill boxes were laid out. Collecting them up I spread the medication over the table. I grabbed a bottle of whiskey and began drinking from it, grimacing as I did so. The tears continued unabated and between sips I cried hysterically whilst staring at the tiny pills.

I was inconsolable. I felt there was no hope for me, that I had to keep fighting when I had no fight left. I was crying so much I could hardly breathe through my sobs. I felt devoid of life. It felt like I was in a haze between life and death, of wanting to die and making it a reality. It didn’t feel like my mind was connected to my body any longer. The world around me felt ethereal, and I in a trance. A trance that could only be broken by ending my life. I wasn’t alone for the rest of the day, with my boyfriend coming home early from work to look after me. I don’t remember much else from that day. The hours morphed into a muddied state of tears and an inescapable dread. The only escape I could find was going to bed, and as I lay there I wondered if dying was like falling asleep, and how I wished that it could be this easy; that I didn’t have to ever wake up from this sleep.

I would never have written this, or admitted it, if it hadn’t been for the support I now have from the community on twitter. It’s different to the support I had on the forums back in the noughties, but it isn’t inferior. The way I spoke about my mental illness back then was full of oversharing, but often with a pinch of sarcasm and self deprecation. I hadn’t grown to accept what I was going through and how much of an impact it was having on my daily life.

As a writer I self promote; as a freelancer its essential. I’m older now and the way I use the internet has evolved as I’ve matured. I have more of a foothold, a stronger online presence. I’m fiercely open, loud and proud about my experiences of mental illness and being bisexual. There’s no more anonymity from me. I’ve found that’s a positive step. The forums I found such a connection with may have disappeared, but they gave me the confidence to stand up for the vulnerable, embrace the weird and fight against discrimination. I truly believe these online communities forged the way towards creating a generation more open to difference than ever before.

We Need To Stop Using Mental Illness To Negatively Describe People

“They’re mental”

“So bipolar”

“What a psycho”

“That’s crazy/insane”

Lets be honest here; It’s lazy and ignorant to use a mental illness to negatively describe someone. They’re a myriad of words you can use to describe a situation, or person. It doesn’t have to have anything to do with mental illness. What do you mean when you say these phrases? Are you correlating mental illness with badness, danger, evil? Do you describe people that disagree with you as being mentally ill? These assumptions or connections to mental illness help no one. It doesn’t improve your argument or sufficiently get your point across. In fact, you’re giving the person you’re arguing against an excuse for their behaviour. In the end, it just makes you look foolish.

It can break someone down to hear those words used that way when they’re struggling. When I hear these terms used negatively it breaks my heart. It shows a complete lack of understanding of the effect your words have on vulnerable people. Those who are some of the most vulnerable people in our society. Imagine yourself with a mental illness. How would you feel if something you lived with everyday was used in a negative way? Used so freely, brazenly out in the open in common language. It would hurt you. It would have a profound impact on how you valued yourself, and how you felt others saw you.

So what words can you use instead?

“Unbelievable”

“Shocking”

“Absurd”

“Awful”

“Outrageous”

“Ridiculous”

“Laughable”

“Fucked up”

“Ludicrous”

“Foolish”

There are many more. I’m a firm believer in using the actual adjective you mean when describing something. When people say there isn’t much stigma left surrounding mental health, I always direct them back to how we all use language. How it’s ingrained in our colloquialisms to call someone “crazy” or “mental”. How casually these terms are used, and the little thought that goes into what we’re saying. How using these words effects how those with mental illnesses are treated. Using these words so negatively keeps the people that need help hidden.

Language is a powerful tool. Use it sensitively and with love.

Unexpected Stigma

I have been very lucky with the care I’ve received from medical professionals in the past few years since my diagnosis of bipolar and psychosis. The two psychiatrists who’ve been charged with my care have been understanding and respectful. All good news. That is, until this week. I have a new psychiatrist. My first appointment with him at the end of last year was fractured and awkward. I thought that maybe we just needed to get to know each other, and build a rapport.

The appointment this week was even worse. I’m not in an amazing place at the moment. I feel stressed out and my moods feel all over the place. One moment I feel suicidal, the next I’m full of a tense energy that makes me irritable and lash out. I’d hardly slept the night before and had spent the morning before my appointment contemplating taking all my meds at once with bottle of whiskey.

My Mum took me to my appointment. Before we left we talked about how I’d been feeling. She was calm and compassionate towards me, and didn’t judge. Mum encouraged me to be completely honest with my psychiatrist and not to hide anything from him.

I walked into my psychiatrists office. He didn’t stand up to greet me, he didn’t smile, barely looking up from his computer screen. I laid it all out for him. Through tears and scattered sobs I explained how stressed I was, and how I didn’t know what to do about it. Without looking up from his screen and as he typed he passed me a box of tissues. No eye contact. No words of encouragement. No empathy. I was shocked. We sat in silence, the only noise the clacking of the keys on his keyboard.

Eventually he spoke. Matter of factly he said,

“Are you taking your medication and is it still working for you?”

I replied that they were working, but that it wasn’t the point. He made some agreeing noises. I told him about my ongoing problems with food and that I’d managed to break the binge/purge cycle of bulimia, but I was still struggling. He asked if I’d ever been referred to the eating disorders team and I said no. He left it at that. I was in too much of a vulnerable place to press him further and ask if he was going to refer me.

Then I thought ‘sod it’ I’m going to be honest about how he’s making me feel. I told him how appointments like this often put me on edge and I dreaded them. These appointments made me deal with difficult feelings and I was finding it especially tough today. Instead of providing some supportive words he simply told me I wouldn’t have to come to the hospital anymore. He was going to discharge me back to my GP. I was still crying, now my body was shaking with the tension and fear I was experiencing. None of this seemed to bother him.

I often see people celebrating being discharged from their psychiatrist or mental health team. I’m not one of them. I’m not ready for this change. I again sat in shock opposite him as he started to explain how long I should be on my meds for and the process of tapering off them. Tapering off! The second part of 2018 I’d only been truly stable for the first time in my adult life and he was talking about taking that away, already. Like I said, I was feeling vulnerable and didn’t have the capacity to challenge what he was doing.

I knew what he was doing was wrong. I knew this was stigma I was facing, but I was shocked it was coming from a psychiatrist. He wasn’t treating me with respect, as an equal. He was making decisions for me without discussion, without asking my opinion. I’m an expert on my own mental health, I live with it everyday, so I should be involved in significant changes to my care.

I’ve had time to reflect and I’m going to make an official complaint about him through the hospital. I’m also going to meet with my GP to discuss my moods and the stress I’m feeling. This isn’t ok, and isn’t the behaviour I’d expect from a medical professional.

Those of us with severe mental illness are here and should be visible in the mental health conversation

Self care, wellbeing, mindfulness, depression, anxiety.

All words the general public are accustomed to hearing. They are part of the mental health conversation and have become integral to increasing understanding of mental illness.

What about psychosis, schizophrenia, PTSD, OCD BPD? These are terms that still make people feel uncomfortable and on edge. People still believe that if you have psychosis or schizophrenia you’re dangerous and violent. They use the label ‘psycho’ to define you. They believe PTSD can only happen if you’ve been in a war zone, and not understand domestic violence or childhood abuse can make the same huge impact on your life. If you have BPD you’re seen as attention seeking and manipulative. If you have Bipolar you’re unpredictable and a nightmare to be around. All are untrue and have deep and long lasting effects on each person who carries these diagnosis.

I’m worried that the conversation is being hijacked by ‘mindfulness’ and ‘wellbeing’. Those of us with severe mental illness already feel isolated and often go unnoticed; I don’t want us to become invisible. People will often shy away from connecting with people that have severe mental illness. It might be a lack of understanding and education that stops them. The media then has a responsibility to highlight what makes people uncomfortable, and address it. Rather than creating articles, publishing books and making podcasts that they know will be popular, take a chance and be on the side of those that feel isolated and invisible. Mindfulness is a trend, its a fad. When it fades into the background and out of the public consciousness, what’s left? Mental illness will still be here. There will still be people fighting a battle everyday. You might disagree with me but these trends happen in cycles.

I think mental health advocates and bloggers can often live in a bubble. A bubble full of supportive, like minded people on social media. When that bubble inevitably pops, we see what public perceptions of severe mental illness are really like. It’s important that we have these difficult conversations with people that disagree, or are peddling stigmatising tropes about mental illness. It doesn’t need to be a confrontation, if we look at it from a different point of view to our own.

I have struggled with the idea of my blog not being popular. That it isn’t relatable enough. Sometimes I think I would have more readers and subscribers if I wrote more posts about general wellbeing. That if I pitched more articles about this I’d have more commissions as a freelancer. But I don’t. I’m authentic, write honestly and truthfully. The moment I stopped comparing myself to others and thought ‘fuck it, I’ll do this my way’ I found blogging much more therapeutic and enjoyable.

If you see someone taking a chance and writing about severe mental illness, support them. Like and comment on their content. Share their stories. If you see someone peeping over the parapet and writing about psychosis or schizophrenia for instance, in the press, read what they have to say. Especially articles written by ethnic minorities, men and those from the LGBTQ+ community. Again, share it far and wide and encourage others to read and learn about severe mental illness. Please don’t ignore us. We can be a vital part of the mental health conversation.