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.

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.

My mental illness Q & A

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1. What is your mental health issue?

I suffer from Bipolar Affective disorder. It first manifested as depression, but I was later diagnosed with Bipolar. As part of Bipolar, I also have psychosis, where I have times when I experience auditory hallucinations. I also suffer with panic attacks and bulimia.

2. Do you have medication and/or therapy?

Currently, I am only receiving medication for Bipolar. I take lamotrigine a mood stabiliser, aripiprazole, an anti psychotic and sertraline, an anti depressant. I am hoping to receive some form of therapy organised through my psychiatrist.

3. What therapy/medication have you tried and has any worked for you?

The combination of medications I listed in the last question are undoubtedly the most effective of all the medications for Bipolar I have been on. The side effects are minimal; they make me extremely tired, but I take them before I got to bed so they help me to sleep. Before this I was on quetiapine, which I can only describe as making me zombified. I was constantly tired and lived in a haze of forgetfulness and had a complete lack of concentration. I was then on respiridone, which initially worked well, but because of a hormonal balance I had to stop taking it.

For panic attacks, I found CBT (cognitive behaviour therapy) to be helpful. It helped because the panic attacks I was experiencing at the time were environmental. After stressful periods of time I would have an intense and painful panic attack. It taught me how to change my thinking when I was stressed.

4. How long have you had problems for?

I was first severely depressed when I was fourteen. I became a school refuser, and was referred to a psychologist. I had multiple bouts of mania (which I didn’t realise was mania at the time) during my late teens and twenties. I was finally diagnosed with Bipolar aged twenty seven.

I started experiencing panic attacks when I was twenty, and developed bulimia during my early twenties.

5. Do your family/friends know?

My family and friends are all aware of my mental health problems. I encourage them to talk to me and read my blog if they are unsure or confused about my illness.

6. Does this affect your work and daily living?

In a word, yes. I am currently unable to work a full time job, with my income coming from sporadic freelance writing jobs, selling my artwork on Etsy and DLA (disability living allowance), now known as PIP (personal independence payments). Daily life can be a struggle if I’m in a depressive episode, where I’m unable to do anything, let alone work or socialise with friends. Relationships can become strained when I’m unwell. I’m difficult to be around, because I either shut down completely, or become angry and rude.

7. What makes you feel calm?

Listening to music, especially alternative eighties and nineties songs, as they remind me of happier times. Bubble baths are my absolute calming, safe space to be in. Snuggled up reading a good book, especially an old favourite.

8. What do you do in crisis?

The number one thing is to tell someone I’m in crisis. Being alone during these moments can be unbearable. I need someone to give me a hug and talk to me, even if it is innocuous and dull. If I’m alone I’ll ring or message my husband or my mum. I try and distract myself from the intense feelings I’m experiencing.; whether that’s listening to music, having a bath, or playing a video game. Sometimes this isn’t enough and I have to ring the local crisis team, or my psychiatrist, who is awesome at organising emergency appointments when I’m in crisis.

9. What advice would you give to others suffering?

My advice is to find support as soon as possible. At appointments sometimes you need to be confident and assertive to be taken seriously and to be given a diagnosis or support you need. I know it’s incredibly difficult to do that when you’re ill, so take someone close to you that understands what you’re going through.

Become an expert on your mental illness. The more you know, the more you will understand and find solutions to combat your mental illness.

10. What makes you smile?

My husband, my family and friends. My hyperactive cat, Matilda. Animals, especially ducks, bears and otters. Nature, hot summer days, music and art.

11. Describe your mental health issue in 5 words –

Debilitating. Bewildering. Complicated. Painful. Terrifying.

12. Insert a picture to make people smile –

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My Eating Disorder Recovery Tools

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I have started on my journey to recovery from bulimia, and I’m determined to conquer this dreadful disorder. I talk about it in more depth in the post I have an Eating Disorder. It has taken over my life and that is the hard part; what do I do to fill my time when I would otherwise have been thinking about food or bingeing/purging?

The first thing I did was to write out some distraction techniques and stick them on my fridge. I wrote them out on cute, donut post it notes, because I need to laugh at myself and the situation I’m in or I’d just cry! Dreaming up ideas to distract from the constant urges was easy enough. They are simple everyday activities I can do that won’t cost me anything, and I can do from home:

Have a bath – My go to reaction. I feel safe in the warm water and surrounded by bubbles.
Sketch/Colour – I can lose myself in a drawing of my own design, or in an adult colouring book.
Listen to music -Singing along to an album that suits my current mood lifts me and can fill me with confidence and willpower.
Play with the cat – A self explanatory endorphin releasing activity!
Phone a friend – Not necessarily to talk about why I called in the first place, but to hear their voice and have a catch up.
Write a blog post – This blog is my therapy right now. Writing down how I’m feeling in the moment can feel like a great release.
Clean the house – I always feel more positive when the house is clean and tidy. Cleaning all the things that have been niggling at me will distract me.
Read a book – Snuggling up on the sofa under a blanket with a good book is comforting and pleasurable for me.
Go for a walk – Fresh air and natural light always lifts my mood and gets me away from temptation in the house.
Go on a support forum – I find the beat message boards very helpful. I can anonymously lay out my emotions without judgement.

I see these distraction techniques as Step 1. They are for when I’m first beginning to think about bingeing, but have no concrete plans to do so. If I can catch these thoughts early on, maybe I can stop them manifesting into action.

I’ve realised that when these fail, I need a backup plan. At the moment I don’t trust myself when I’m alone. I’m much more likely to binge and purge during the day when no-one is around. I currently work from home, so I find myself alone often. The is not ideal, but I have found a solution. On days when I don’t need to go out anywhere, I will give my debit and credit card to my husband, so I physically can’t go to the shops and buy food to binge on. On days when I want to work elsewhere, or spend the day in town, I can have my cards. This may sound extreme, but it’s necessary in my current mind set. This won’t be forever, and I’m looking forward to the day when I can trust myself again.

I have decided to plan my meals in my daily planner. Having my meals written down will make me accountable. If I binge on food I have to add that, and if I purge, I will add that to. Along side this, I’m writing down my schedule for the day and the moods I’m experiencing. I’m hoping this will keep me on track and make me more aware of when and why I am bingeing and purging. If I can highlight these times, I can make changes to my routine to combat it.

As a final tool to recovery, I’m taking the plunge and asking my psychiatrist to refer me for therapy. I know that my eating disorder is more than just about food, and that I have some deep rooted beliefs about my body image and my self worth. The beginnings of my eating disorder If I can work on these, hopefully I will have the strength to begin to love my body and believe in myself.

The beginnings of my eating disorder

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I have been thinking about this recently. Where did it come from? I suppose as a child I was always a tomboy, and didn’t look forward to the idea of being an adult and having curves. I was almost scared of the idea of becoming a woman with breasts and big hips. I became overweight in my mid teens during my first bout of depression. The chasm I found myself in overwhelmed me. I needed something, anything in my life to pull myself out of this hole. So I resorted to eating. I’d always enjoyed food, but chocolate and crisps had been a treat, not a way of escaping. But escapism is what I was in desperate need of. During those couple of minutes of eating I could forget the penetrating emotional pain I was experiencing, and concentrate on the smells, texture and taste of the food I was eating. I would hide crisps and chocolate wrappers around the house, because although for an instant I felt better, the guilt I felt afterwards compelled me to hide the evidence. I became more and more aware that I was gaining weight, and so did others around me. I started eating bigger portions at dinner and was forever picking at food. I would become incredibly upset when someone told me I had eaten enough, and that I should stop now. It made me feel like my obsession with food had been discovered, and I had been caught out, that made me feel horribly embarrassed and defensive.

I was bullied at school because of my weight. A group of boys would laugh at me and tell me I was disgusting. One day this group were walking behind me, talking about a rumour that a girl in our year was pregnant. They shouted over at me,

“Is it you, you fat bitch!”

I tried to ignore them , but I couldn’t. These boys would oink and bark in my face as they walked past in corridors. It shattered my self esteem, that I had been gradually building up whilst recovering from severe depression. What they had said and did stayed with me for years. I lost the weight over a few years slowly and healthily. Ever since my weight has fluctuated and I have never once felt comfortable in my own body. I look in the mirror and I see something awful and grotesque staring back. My husband, family and friends say there is nothing wrong with the way I look, but I find it difficult to believe. I analyse every word said about my appearance, and every look that comes my way. I walk down the street and obsessively compare myself with other people, and say to whoever I’m with,

“Do I look like that? Am I that fat?”

I’ll see my reflection in a mirror and feel like I’m going to burst into tears with how incredibly huge I am. I’ll exclaim,

“Fucking hell I’m huge! I’m a whale!”

I’m in a constant battle with my own mind. There is a part of my mind that never stops torturing me, that never lets me fully relax in my own body.

Everything started to unravel during a period of time when I had lost a significant amount of weight. I felt good, still not liking what I saw in the mirror, but saw it as an improvement. Then I decided to have the contraceptive implant. Bad choice. My GP didn’t mention the side effect of serious weight gain and I put back on all the weight I had lost and more in just six months. I felt disgusting and felt physically sick living in my own skin. Wanting to tear out all the fat I could feel from my body, I began to binge. As I’ve already said, bingeing was how I initially put on weight as a teenager. Eating a chocolate bar, a bag of crisps; it was emotional eating and I felt better for a couple of hours until the regret and guilt crept in. I never purged though. I had a phobia of vomiting so would never have dreamt of doing such a thing. As an adult though, life was different. I had grown out of the phobia but the guilt and regret of bingeing remained. So I began to purge, in secret. It was a horrible ordeal to begin with and I often wondered why I was bothering to cause so much damage to myself. But then the threat of more and more weight gain loomed and I continued the ritual. It began to take over my life, and I started to purge regular meals, in a desperate attempt to be able to live within my own skin. I lost weight drastically, but was still deeply uncomfortable.

I’m managing and trying to recover now. I’m hoping to see a psychologist when I can pluck up the courage. I’m still in a place where I don’t believe I’m deserving of help. Hopefully this will change, but I’m not putting pressure on myself for my thoughts to magically switch.

I have an Eating Disorder

I have bulimia. Believe me, I hate talking about it. To me it’s an embarrassing secret I keep hidden from others. For years I wanted no one to know about it. I’m ashamed that as a grown woman I do this to myself. It’s not just a teenage illness; I developed bulimia in my early twenties and have struggled to escape it ever since.

It’s a daily internal struggle. I’m constantly in a battle with my own mind. I feel paralysed by the need to binge and purge. I sit stuck for hours, unable to think about anything else. If I go to a supermarket I’ll be there twice as long as I’d planned, agonising over what to buy. Once trapped in the cycle of binging and purging it’s very difficult to break and can feel impossible. After purging, I feel a great release afterwards. It’s an adrenaline rush that becomes addictive. There is also the thrill that I’ve managed to eat and now I won’t gain weight.

Often when I’m depressed, I binge without thinking. All I want is to just do something to draw my mind away from all the negativity in my head. When I have finished and realised the extent of what I have eaten I feel angry at myself and physically uncomfortable. So, I will purge to counteract that feeling. The swell of anxiety after eating can be unbearable. My stomach is full and it feels ready to burst like a balloon that’s been overfilled with air. The tension inside continues to swell and I find it difficult to regulate my breathing, taking short sharp breaths. My head is dizzy with worry and the nausea is there in the background. All of this is coaxing me, fuelling the compulsion to purge. I can’t think straight, my mind is bogged down with the stress and all I can think is,

“Get rid of it, you’re a disgusting pig. Get rid of it, get rid of it now.”

The anguish I feel is all consuming. I’m trapped and claustrophobia envelops me with the walls around me folding into smaller and smaller pieces, until my world is miniscule. Then the only thing left is the temptation to binge and purge. The guilt I feel is tremendous and I promise myself this is the last time, every time.

I’m currently trying to recover from bulimia. It’s been a monumental task. The daily ritual had become ingrained into my thinking, to the point that I couldn’t picture my life without it. I have had slip ups. I know there will be more, but I will never make it an excuse to give up trying.