My untold story

Last night whilst scrolling through Twitter, I found a tweet from a fellow writer Hattie Gladwell that really got me thinking. Hattie writes for the Metro & like me and many more of us, suffers with her mental health. I see a lot more people talking broadly about their mental health but before last night, I had never seen such a raw, detailed, and real account of what living with mental illness is like.

I immediately related to what she said, and aside from feeling really sad and wanting to give her a big hug, it also made me feel, well,… normal. I’ve had similar experiences over the years, but I always felt so alone. I never talked about it openly before I started blogging, only close friends knew what I was going through. Now I talk about it, but I still find myself omitting details, I still find my self hitting the backspace button furiously and thinking ‘fuck that, people won’t understand’.

As much as things have improved in recent years surrounding the stigma of mental health, there are still people who aren’t convinced. These people I refer to as lucky. If someone doesn’t understand mental illness, its highly likely that they haven’t been through it. I recently had an argument with someone like this who told me the pills I was taking were the reason that I’m psychotic. He put up a status on Facebook comparing poor people in Africa to ‘depressed’ people, asking the question of why people with depression can’t just ‘get on with it’ but people in third world countries can?

I got angry at first because of the way he put depression in inverted commas, implying it’s not real. Whilst I am usually pretty laid back and calm in debate, I get defensive about these harmful comments because sufferers already feel that their thoughts and feelings aren’t valid, it takes a lot of courage to speak up about mental health, to then have people dismissing it as a valid illness is infuriating and down right dangerous.

I thought about removing this person from Facebook, it would be easy to judge him as a complete arsehole and go on with my life, but I didn’t. In his mind he was asking a genuine question, because he didn’t understand, and why would he? Think about it.. Mental illness is complex, end of. It’s complex for the sufferers, it’s complex for the professionals (hence the long process of diagnosis) so imagine how complex it is for people that have never suffered? It’s a valid illness but it is irrational. People who have mental health issues can exhibit challenging behaviour, can be difficult to deal with and if you have no experience or knowledge of mental health then I imagine it’s easy to develop the attitude of ‘Oh just get on with it’, especially if you are dealing with trauma in your life and coping. It would be hard to comprehend.

As much as I’m passionate about mental health I could still see his points, I put myself in his shoes and imagined that perhaps you would look at everything going on in the world, and question it. I mean, what on earth have you got to be sad about? All I could do in this situation is counteract his ignorance with facts and my own experiences, in the hope he would come around one day. There’s no point in blocking out all of the people who don’t understand because in my eyes that’s counterproductive. It’s not so much the people who understand we need to reach out to, it’s also important to reach out to the people who don’t, even if they are rude.

As this Facebook debate ensued I took comfort in the knowledge that others came to my defence. I realised at that point, that his views are thankfully very few and far between, and there is actually lots of support out there within our community. It was the first time, in anger, that I mentioned the word psychosis on my personal Facebook page. I spent the entire night anxious because I had written it, and I didn’t even go into much detail. I kept wondering what people were thinking. Oh bloody hell, she’s a right nutter. I shouldn’t have done that, I shouldn’t have done that – those thoughts played on my mind the entire night.

Then last night I read Hattie’s tweet.

I decided, that I would be doing myself and others an injustice if I wasn’t honest. I saw Hattie’s story, and I identified with it. If I share mine, then maybe other people will think ‘I’m not alone’, and that in itself makes it worth a shot. So whilst my story is at times, embarrassing, it’s important that I know my behaviour is a result of a real illness that I cannot control without medication. So here it is, my first hand account of mental health services in Wales.

NB – Before you read this and think it’s an attack on health professionals, it’s really not. The NHS and the people who work for it are stretched, underpaid, and often undervalued. These frustrations are shared by mental health workers, who I know wish they could do more. Aside from a few, the majority of professionals I’ve worked with have been incredible. Those people are absolute angels, and they save lives everyday and I don’t want this post to deflect from that.

I’ve suffered with my mental health for as long as I can remember, but the first time it became problematic I was just 11 years old. It was really hard for me to get a diagnosis at that point for two reasons;

  • I was at an age when hormones are naturally all over the place. I had already started my periods, and young girls that experience a wide range of emotions can sometimes have it dismissed as puberty.
  • There was a lot of instability in my life, a lot of problems at home and with my family. Mental health can be biological but it can also be circumstantial (the latter is just as valid may I add) so for a long time my problems were put down to my environment.

At the age of 11 I had started to self harm, and had thought about, and acted upon suicide. I went to various counselling sessions but they always had the focus on my family and environment and no one really questioned that it could be anything to do with my mental health. Between the ages of 11-17 I self harmed on and off, usually cutting at my arms and legs with a razor or broken glass, but sometimes I would scratch at my face and chest during episodes, and bang my head repeatedly with the aim of hurting myself as much as I possibly could.

My reasoning for this was when I had physical pain to focus on, it would briefly give me a release from the pain in my mind. I wasn’t doing it to end my life, that’s where people got it twisted. When some of my friends found out in high school they accused me of attention seeking, but it wasn’t a suicide attempt, it was my way of coping.

From then until now I had a lot of trauma in my personal life, which didn’t help the situation but I always felt there was something more. The patterns in my moods were not mirroring the events in my life, sometimes I would experience trauma but be happy (manic) and dismissive, and insistent there was nothing wrong. I strongly believe that if I had the ‘perfect’ upbringing, it wouldn’t have made a blind bit of difference but unfortunately I had to go through hard times that made my illness even harder to deal with.

I’m not giving a sob story by the way, I know people who have weathered greater storms and have coped perfectly, and hats off to them, if people find ways to cope that’s great, but I wasn’t one of those people. The last time that I seriously self harmed I was 17. I was having an argument with my then boyfriend which resulted in police being called. I locked myself in the bathroom and started to cut down my arms. Later on in the night I went to town with friends, but I ended up breaking down in the middle of the pub. Like full on crying like a baby, in public.

I was taken to Whitchurch hospital that night for an assessment. That night I opened up to the doctor in ways I had never done before. They promised me I would get help. Six months later with not a word from them I received a letter offering me counselling. As my moods were rapid cycling, intervention often had to happen at the point of crisis. By the time I received the letter I had already convinced myself, I didn’t need to go. That was the first of the many times I was failed over the years. Waiting lists of six months or more for proper, lasting treatment, was more common than I had ever realised. I wasn’t the only one waiting.

A year later I had my first child, and my mental health declined again, this time it was post natal depression, but in fear of having my baby taken away I suffered in silence. I remember one time walking back to my flat from my mums and thinking how easy it would be to push myself and the pram in front of a bus. I can already hear the outrage from the lucky ones, ‘ anyone who considers harming a baby is sick’ Well yes, you’re quite right – they are sick, and they can also be cured. Post partum psychosis is terrifying, and the mums who have gone through it are absolute warriors that love their kids no less than anyone else. What I didn’t know is that I was more likely to develop it as I had suffered with depression before but at the time I wasn’t aware of this, I just thought I was an awful mum.

Please note, I’m only talking about the pivotal moments I can remember but this has pretty much been the basis of my life on and off over the years. A lot of my experiences I will have to write about separately, as I feel I’m skimming over some important issues.

Life continued with bouts of depression followed by mania, a huge crash due to the stupid arse decisions often made in mania, followed by depression, and so that was my life for a long time. By the time I had my third child I was not prepared to put my mental health on the back burner. I explained my history to the midwife (who was shit and told me that Bipolar was problematic & maybe I don’t have it – you know because apparently everyone’s a mental health expert) and luckily I was referred to a specialist midwife, and got on board with the perinatal mental health team. During my pregnancy I had real reservations of taking tablets, I used to be team anti tablet up until fairly recently so it took a while for me to accept and it was only when I ideated suicide whilst pregnant that I accepted the risks of tablets were far less greater than the risk of harm to myself. This particular time I went awol. I can’t remember much, apart from the fact it was raining, I was in my pyjamas, I was six months pregnant and I sat next to the river taff for hours contemplating ending it whilst my family frantically searched for me. From then on, I have had the best intention to take my tablets, although I’m still convinced I’m not on the right ones.

Everything since that moment was a blur, I feel like I’ve been living in the twilight zone, existing but not living. Going through the motions of day to day life with little to no enjoyment apart from my kids. The peri natal team were alright, but by this point I had been involved with them since pregnancy, and Max was almost 6 months and nothing seem to progress. Everything seemed slow, and by then I had other problems that had stemmed from my illness (Debt, mainly) and I needed more practical interventions that I was offered a little too late. When it came to breaking point, it seemed to me like they had their hands tied with what they could do, so I just felt stuck in limbo. Then a doctor on there team said a throwaway comment whilst on a home visit that put me off seeing them, followed by an appointment with no prior notice which I missed, the fact I had no phone because of my financial situation – all this contributed to them ultimately signing me off from their service (even though they were fully aware how complex my situation was, and in my opinion disengagement should be something that’s anticipated with their service users.)

It was really unfortunate that whilst they withdrew the support I experienced a terrifying episode of psychosis. It all started whilst out shopping on Black Friday. I woke up as normal albeit a bit wobbly in my mood, but nothing to suggest today would be different from any other day. I went to buy an outfit for a night out I had planned so I headed to TK Maxx in Culver.

All I remember is being in the shop and starting to panic, my hands started to sweat, my thoughts began to race and I started to think people were after me. I drove over to M&S to try and connect my phone to some wifi so I could contact someone, all the while experiencing the most horrible thoughts and feelings that made me feel scared of myself.

Through tears I looked down at the little baby who relied on me so much, what am I doing? I can’t do this anymore. My kids deserve better. I drove straight down the my GP surgery, broke down in reception and pleaded someone to take my baby. I was a total mess. The GP responded as well as they could have given the situation. I was seen pretty much straight away, although not offered a room to wait in so my breakdown was witnessed by other patients. I heard a little boy say to his mum ‘Mummy why is that lady crying?’

Whilst sat with the GP I listened as he frantically tried to reach the right department to help me. He made various phone calls, being passed from pillar to post whilst trying to find someone who was willing to see me. He didn’t have to say anything, his expressions said it all. He was just as frustrated as I was. Eventually I was referred to the Pendine, the community mental health service. I was told to make my way there, and so I did baby in tow. I got there, and there was more waiting. I was assessed for around 20 minutes. More waiting. Me and Max waited in rooms the day for hours, I was lucky I still breastfed so at least he was able to eat.

I was then referred to Hafan Y Coed, which is a fancy new building dedicated solely to mental health. They let me drive there, knowing my state of mind, knowing I had my child with me. This hospital was on the other side of Cardiff, it wasn’t around the corner. I don’t know how but I arrived at the hospital in one piece. Still frantic, I could find nowhere to park and so parked illegally outside and put on my hazards.

More waiting,

More uncertainty,

No answers.

The same process, I was assessed for around 20 minutes, and sent on my merry way. The only silver lining being I was now under the care of the crisis team. And so, the next few days I had the most wonderful people visiting me daily, helping me access my meds, I had a medical review with a doctor, they even bought me a phone with £5 credit so I had means of reaching out if I needed too. All of this was appreciated, like I said, staff are angels doing their best under shitty circumstances.

But unfortunately I was still rapid cycling, so it was hard to determine if I had got better or not. I think around a week later I reached breaking point again, I rang the crisis team and told them I couldn’t go on anymore. This time I was picked up by the police. Who even said to me they step in for the ambulance service as I would be waiting hours. The police were amazing, but it was still embarrassing having to get into a riot van outside my home in sight of neighbours, frantic, crying and feeling like a criminal.

I waited four hours in a room with a support worker for another 20 minute assessment. I felt helpless, I felt angry, I felt ashamed. I was told to wait in reception, to which I objected. I asked if I could wait in a private room as I knew from previous experience that the reception could be busy, and I wasn’t in the right frame of mind to sit in a room of strangers.

They insisted I did. As I walked around the corner to reception a festive book sale was taking place. I took a glimpse of the cheery people with their Christmas attire and I freaked out. I fell to the floor in a heap, sobbing. Staff walked past (from different departments) without a word, in guessing that it’s part of the job seeing people in that state so not much of a shocker. Eventually a lovely lady working in the ECT department helped me. I explained why I didn’t want to go into reception. At this point I could hear my taxi driver concerned about taking me home (he had heard me screaming and sobbing) as soon as I knew I had a method to escape and leave, I ran through to reception and insisted everything was fine (it clearly wasn’t) so I could just get home to my family. So they sent me on my way in the taxi. The most awkward journey ever, poor driver. I heard nothing from the crisis team, or anyone, until 2pm the next day, for all the know I could have been dead.

This is just a snippet. A glimpse. A flash of the lightning that has been striking my life since I was 11 years old, and people wonder why am so frustrated? Why I get so angry? This is real for so many people but the nature of mental illness prevents people from speaking out. Because they are too ashamed. I’m done with being ashamed. People are dying, people are suffering and unless change starts to happen at government level, it’s only going to get worse.

There should be a dedicated mental health expert working out of GP surgeries to take pressure off doctors, processes should be smooth, waiting lists of six months need to be a thing of the past, but it all comes to one thing – funding. Which is why I’m making it my mission to fight tooth and nail to change policy and bring about changes for the better. It’s not going to happen overnight, but stories like Hattie’s, and stories like mine will hopefully encourage people to make the changes needed to make service work better for us.

Thank you for reading.

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