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.

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.

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.

A Life Lived Vividly Series – Psychotic Doesn’t Equal Dangerous

A Life Lived Vividly

Evil

Nasty

Freak

Bitch

Jealous

Dangerous

These are all words that people relate to psychosis. We all need to stop using it as a derogatory term. So often I hear people described as psychotic when they’re being cruel, or acting unpredictably. Recently I saw someone on twitter describing an ex as a ‘psychotic nazi.’ Politicians, especially a certain orange American one are constantly being described as psychotic. It’s lazy and ignorant to use a mental illness to negatively describe someone.

Psychosis is a mental health condition that makes you feel;

Scared

Confused

Vulnerable

Alone

I have psychosis. I hear things that aren’t really there. I’m a danger to myself when I hear voices. Those living with hallucinations and delusions are some of the most vulnerable in society. Feeling detached from reality and not being sure what you’re seeing or hearing is real can be terrifying.

Once I’d just turned the lights off and got into bed. Out of nowhere, I heard a voice, as if someone was speaking right into my ear. The voice whispered in a slow, assured tone,

“I see you.” I sat straight up in bed, my heart thudding in my chest. I couldn’t move, I felt paralysed with fear. I couldn’t sleep for the rest of the night. I couldn’t calm down and kept hearing that voice whisper in my ear. Even now when someone says that phrase I’m transported back to that night and I feel deeply uncomfortable.

People with psychosis are far more likely to hurt themselves than others. According to Time To Change

‘Over a third of the public think people with a mental health problem are likely to be violent.’

Psychosis doesn’t make you a ‘psycho’. It doesn’t make you a freak. It doesn’t mean you’re scary. It doesn’t mean you’re dangerous.

How do you think it makes those feel that have psychosis to keep hearing the word used to describe murderers and violent criminals? Hearing it in tag lines for horror films and descriptions for Halloween costumes? It hurts. It makes a tiny piece of you feel that maybe you’re actually evil and dangerous, because you’ve heard it so many times.

I’m in a place now where I understand my condition, and I’m learning to manage it. It wasn’t always this way and for me and many others like me I was terrified of opening up about my experiences for years.

Too many people mix up the meaning of psychosis with other disorders. They use the term psychopath to describe those with psychosis. They aren’t the same thing. Psychosis means a person will hear, see or feel things that aren’t really there, or a combination of these. It doesn’t mean you’re going to go hurt anyone.

We’re ill not dangerous. We deserve compassion, understanding and to be listened to without judgement. Please think about the language you use and how harmful it can be. Your words can cause more harm than you realise. They could cause someone to remain silent and not look for help that they desperately need.

Don’t let the Worry of Being Ill Ruin A Holiday

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Living with mental illness is tricky. It’s a sneaky bastard that creeps up on you when you least expect it. Often when we relax, mental illness barges its way into our lives and tries to take over. A prime example of this is when we go on holiday. We can’t always be 100% sure we will be well when we plan and book a holiday, it’s a risk anyone with mental illness takes. We can plan meticulously but still have a mental health crises. Or like me, forget something vital to staying mentally well.

Last year my husband and I went on holiday to Devon. It started off well, with us going to the beach and going for long walks in the woods around where we were staying. We’d relaxed and spent long evenings drinking, chatting and enjoying each others company. Three days in, I started feeling strange. I felt rundown, almost like I was coming down with the flu. I realised I’d run out of medication. Not only that, but it dawned on me I hadn’t taken medication at all since we’d been in Devon.

Shit, shit, shit was my initial reaction. The damage had already been done, and I knew by the time I’d organised emergency meds the holiday would be pretty much over. I had the shakes, a temperature, I felt nauseous constantly and felt dizzy and exhausted. I spent the rest of our trip in bed or under a blanket on the sofa, far too ill to do anything else. I felt incredibly guilty, like I’d let down my partner and ruined our time away together. It was our only holiday away, our only week just us together and supposed to be a week where we could totally relax.

This was when it all went wrong, and I let my anxieties about not enjoying my holiday ruin it for me. I have coped better, I’ve planned better and I was annoyed at myself. Being mentally unwell on holiday doesn’t mean it’s totally ruined. If you plan well and go in with a realistic outlook, you can still have a great time.

A few years ago we went to Croatia for a week away. We were staying near Dubrovnik, on a tiny island called Kolocep. I had been struggling with a persistent depressive mood leading up to the holiday. I was nervous, on edge. What if i was too ill to do anything I’d planned? Before leaving, I told myself so what if I’m ill? I’m there ultimately to relax. If I have a difficult day there’s nothing wrong with taking a break from our plans. I hadn’t scheduled to go somewhere or activities every single day. There were days when I wanted to just lay on the beach or sit by the pool and read. Trips could be moved. Personally I like to plan a trip myself, rather than be led by a tour guide. This gives me the freedom to see how I feel each morning and decide what we’re going to do there and then.

It ended up being one of the most memorable holidays I’ve ever been on. I didn’t allow the expectation that I must be on top form and enjoying myself every single minute of every day ruin my time away. I was depressed, but I still managed to explore the old city of Dubrovnik, go kayaking and discover hidden coves around the islands. I accepted the fact that I would have bad days, and there were a couple of afternoons when I went back to my room and went to bed or simply just sat and had much needed time alone. I didn’t feel guilty for doing. Most importantly, it didn’t ruin my holiday.

In a couple of weeks, I’m heading off to Cape Verde, for some much needed relaxation. This time I’m going with a much more positive frame of mind.

I Gave Up Alcohol For My Mental Health

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My last psychiatry appointment was a tough one – I was told with certainty that I should, no, needed to give up alcohol. My response was a hopeful one, surely half a bottle of wine on a Saturday night was alright? The answer was a definitive no, even that amount of alcohol was far too much. We agreed that I should go sober, and I agreed reticently. I left feeling dejected, grumpy and silently cursing my psychiatrist. Although I felt fed up, I had known before my appointment that this change needed to happen.

Why go sober?

My psychiatrist explained that alcohol reduces the effectiveness of many medications. Alcohol is a depressant, and pretty much cancels out the work my mental health medication does. In other words, I might as well not bother taking my medication every time I drink. If I have three days in a row of drinking, then that’s three days without medication. For me that can cause the beginning of withdrawal symptoms, that feel like having the flu. Or, more seriously, it can cause a bipolar episode of severe depression or mania.

The mental and physical effects

After a heavy weekend, or a number of days in a row of a ‘few’ drinks in the evening to help me unwind and relax I start feeling the negative effects of alcohol. I’ve noticed a correlation between heavy drinking and heart palpitations, that often leads to a full blown panic attack. Panic attacks are a debilitating and exhausting experience, and I’ll feel drained for days afterwards. Another experience I’ve had after drinking is psychosis. Earlier this year I drank heavily over my birthday weekend and at the end of it began to hear voices. I wrote about the experience in this post, My Hearing Voices Journal Alcohol free, I wouldn’t have gone through these experiences, and would have stayed mentally well and stable.

How I did it

I literally just stopped! Seriously though, it’s been tough, especially on nights out and at family celebrations. I’ve been drinking since I was fourteen, so to just suddenly go completely sober was a massive challenge. I was open about it with everyone, and my partner, family and friends have all been extremely supportive. I reached out to the twitter community and was given heaps of advice and tips on non alcoholic drinks so I wouldn’t feel like I was missing out on nights out. Soda and lime cordial has been my saviour when I’m out at a bar, along with flavoured sparkling water when I’m having a night in. It’s taken a terrific amount of self determination and will power, but I knew it was something I had to do for my mental health.

How I’m feeling now

Two months later and I feel fantastic! I’m clear headed, have more energy and haven’t had any palpitations or panic attacks. I’ve been stable and haven’t experienced psychosis or any depressive or manic episodes. I feel physically healthier and I’ve lost weight. I know my medications are working as they should be now, and that’s given me the impetus to stay sober.

I may have left my psychiatric appointment with a feeling of dread and wondering how the hell I was going to go sober, but I’m so glad I stuck with my decision.

Still More To Do To Tackle Mental Health Stigma

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.

Mental health, the internet, and conspiracy theorists

Last week Time to Change charity shared this blog post What not to say to someone with Bipolar Part 2 on their social media channels. It was great to be able to reach a wider audience and to find new readers. In my foolishness, I decided to go on facebook, and read the comments section. This was a massive mistake. Although the majority of commenters were supportive and agreed with what I was conveying, I came across one poster that was vehemently against the recognised science behind mental illnesses. Everyone is entitled to their opinion, but this one poster was spamming the comments section and making what I believe to be harmful statements. This is how it began:

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The poster was referring to medication, and how it doesn’t work. Intrigued, I looked up Kelly Brogan, a ‘holistic psychiatrist’, who believes that mental illnesses, (and cancer) can be cured through healthy diet and exercise alone. I felt that it was important to engage with this poster, and try to explain how medication is vital to many people living with bipolar disorder.

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After this calm, polite and factual response they went on the defensive, quoting a psychologist (who would have no training in medication or psychiatry), showing me a photo of a course they attended but not the information about the college or school, and swearing at me.

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I wanted to get to the facts and decided to ask where all the evidence for these claims were. Many people that are against psychiatric medication in the UK often cite opinions and ideas that originated in the US. I thought it was important to make it clear the stark differences between the UK and US health systems.

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After my questioning I was sent a barrage of photos of healthy meals and how eating this way would cure mental illnesses. It was also insinuated that myself and other people posting were not eating healthily otherwise we would be cured. The response below shows that the person is living in a fantasy land, comparing themselves to Martin Luther King or Gandhi. It seems they believe the majority of mental health sufferers are in the wrong and are being lied to.

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I found her responses to be incredibly rude, patronising and downright strange. Again, I asked to see some evidence that wasn’t anecdotal, but a serious, long term study. At this point, I was struggling to keep my cool, this whole conversation was making my blood boil.

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I still feel my responses were needed and respectful. What this woman was spreading was dangerous stigmatising of mental illnesses. This was the end of the conversation, as I received no response beyond this. Obviously she wasn’t able to back up her claims with hard evidence, which was my main point. As I said in my last comment, someone reading these comments could be in a serious crisis and in desperate need of support. Lecturing them about their eating habits and how medication they have been given is toxic could push them over the edge. All of us should live a balanced lifestyle with healthy eating and exercise at its core, but it does not cure bipolar, or other chronic, serious mental health issues. Medication as I’ve said previously, saves lives. The right balance and combination gives people a chance to live and thrive. As a community, people with mental health problems need to look out for one another. When we can, we need to stand up for those that do not have a voice, or are too unwell to see past such dangerous claims.

So, What Is Bipolar Disorder?

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Bipolar disorder is characterised by extreme lows, and extreme highs. What I mean by this is extreme mood swings. Lows can lead to suicidal depression, and highs resulting in mania. Bipolar is extremely difficult to diagnose, as it affects people differently. Not everyone has extreme mania, which can result in reckless behaviour and delusions and hallucinations.

Depressive Symptoms

If you’re depressed, it often manifests as being tired all the time, crying over little things or for no reason at all. You’ll find yourself losing interest in hobbies and activities you used to enjoy and not wanting to socialise or leave your home. Depression can leave you feeling worthless, hopeless and fill you with dread. The most serious aspect of depression is having suicidal thoughts, planning and possibly acting on them.

Manic/Hypomanic Symptoms

Hypomania begins with accelerated speech, where you talk very fast and people find it difficult to keep up with what you’re saying. You’ll not need to sleep or eat as much as you used to. Thoughts are uncontrollable and constant. With mania, your judgement may become impaired and you start to act impulsively. The most serious aspects of mania are characterised by a complete lack of control and putting yourself in dangerous situations, as well as delusional thinking (believing wild ideas about yourself or others) or hallucinations (seeing, hearing, feeling things that are not really there).

According to the charity Bipolar UK;

More than one million people in the UK have bipolar.
It can take on average 10.5 years to receive a correct diagnosis.
Individuals with Bipolar are misdiagnosed, on average, 3.5 times.

Below is a mood scale that explains the extremes of Bipolar. Most people will usually find themselves between 4 and 6 on this scale. With Bipolar, mood swings could leave you falling anywhere on the scale.

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My Experience

As I’ve already mentioned, Bipolar unfortunately can take a long time to diagnose. I first became very ill when I was 14 and was misdiagnosed with depression. It took until i was 27 to finally have a definitive diagnosis of Bipolar. The problem I have found is many people misunderstand it and only ask for help or are given support when they are depressed. Bipolar in young people can sometimes be misdiagnosed as ADHD, because of the manic symptoms they are showing.

I was on antidepressants on and off for years. Initially I was given counselling as a teenager, and took antidepressants in my twenties. They didn’t help me, but made my mood what I would call hyper. I couldn’t stop talking, I did reckless things, drank too much, took drugs. I would feel amazing and full of confidence on anti depressants. I would often become very angry and upset people and get into arguments and fights.

Now I’m doing really well, I’m stable and I’ve found the right combination of medication that helps me manage Bipolar. It’s taken four years to find the right combination of drugs that help me stay relatively stable. I need to be very strict with myself and take them everyday and limit how much I drink, or they won’t work how they are supposed to. I’ve been told by my psychiatrist that it is a life long condition, and I need to learn how to manage it.

So where did your bipolar come from?

To be honest i have no idea what the cause of it was. I came from a happy family, although we struggled with money and had arguments, nothing traumatic happened to me during my childhood. My Dad believes that my Grandmother had it, but she was never diagnosed that we know of, and we think I may of inherited it from her. As a child I was quite quiet and would bottle up my emotions, and then I became very depressed as a teenager. It wasn’t until I was about 16/17 when my behaviour changed and now I realise it was probably mania. It was like my whole personality changed overnight and I became very loud, talkative and hyperactive.

Advice on what to do next

I think it’s important to be careful before diagnosing someone with Bipolar. It is a severe and life long condition and the medication is serious stuff. Doctors I understand want to be careful before referring patients. To be diagnosed, you have to have a psychiatric assessment with a psychiatrist, but you first have to be referred by a GP or counsellor. Often it helps to take someone with you to an appointment. Sometimes a doctor needs to see supporting evidence from family or a partner before you are taken seriously.

My advice if you are worried that you or someone you know may have Bipolar is to keep a mood diary. Track how you are feeling everyday over a period of a few months and take it with you to see a doctor. I know that seems like a long time but it’s better than waiting years to be heard. It might also help to sit down and write a chronology of your problems from when they started up until the present day. Both of these can then be evidence to show a doctor, and will show if there is a pattern of depression and mania.

What not to say to someone with Bipolar Part 2

Continuing on from the first part, which you can read here I’ve explored conversations I’ve had regarding bipolar. As I mentioned in part 1, many of the questions or statements are meant to help, but are things I have heard many, many times before. Sometimes they can be insulting, which is difficult to deal with. I have been taken aback by how little people understand the condition and what they feel is acceptable to ask. It’s like when a woman is visibly pregnant, and people will touch her tummy without asking. It’s invasive and so are some of the questions I’m asked. Statements are made without thinking. If people stopped and thought to themselves “would I be alright if someone asked me that?” they may change their mind before speaking.

You can’t have bipolar, you seem so nice!

I’m always confused by this one. Having Bipolar is not a character flaw. Just because I suffer with intense mood swings it does not make me a bad person. I’m not going to suddenly attack you or go on some rampage. Mental illness for the vast majority of us doesn’t work like that. I find people that suffer with mental illness have a huge amount of empathy for others, and are willing to support friends and family even when they themselves are struggling.

A healthy diet and exercise will make you feel so much better.

I know this suggestion is supposed to be helpful, but honestly I have heard it a ridiculous number of times. As someone that wasn’t diagnosed for over a decade of suffering, I have tried everything I can possibly think of and that includes a healthy diet and regular exercise. Although I agree it helps with general well being, it cannot alone alleviate symptoms.

But you don’t look Bipolar.

I’m not sure exactly what people imagine a Bipolar sufferer to look like? I suppose they feel I should be wearing all black when I’m depressed, with my head in my hands, rocking back and forth. When I’m manic, maybe they believe I should have a crazed look in my eyes and act like a clown all the time? People don’t always present as being manic or depressed. I don’t look much different during these times, I just look like me. I might look more tired than usual when i’m depressed, but on good days I can still dress up and wear makeup.

Do you really need to take all of that medication?

Yes, yes I do. Medication has saved my life and giving me stability that would never have been possible without it. I talk at length about this in the post Psychiatric Drugs Saved My Life

I’ve watched Homeland/Silver Linings Playbook and you don’t act anything like that.

Bipolar disorder is not the same for everyone. There are different forms of Bipolar such as Bipolar I (characterised by extreme manic symptoms and severe depression), Bipolar II (with a milder form of mania called hypomania and severe depression). Rapid cycling (where you switch from mania and depression in quick succession). A mixed episode (where you could be dealing with both extremes at the same time) and cyclothymic (a chronic but milder form of Bipolar disorder). Film and television will always show the extremes of mental illness. I have become astute at hiding how I’m feeling, after years of trying to fit in. So I may not always appear to be ill, but in fact inside I’m struggling.

It’s a shame that I’ve had to post this, but the reality is that many people still do not understand bipolar disorder, and mental illnesses in general. I’m sure there will be a part 3 of this somewhere in the future, but I hope not for a long time.