More from my client Claire on her experience of the mental health system. parts 1 and 2 here.
I have been prescribed various antipsychotics, mood stabilisers and anti depressants over the past few years. To name just a few side effects: I have had weight gain of up to five stone (100lb) in two years, extreme hair loss, skin rashes, sickness, dizzy spells, fatigue, insomnia, the most horrific nightmares imaginable. When you suffer with mental health problems and you have to take medication that increases your appetite so your weight balloons, it makes you more depressed and hate yourself even more. I was carrying half my body weight again, and I had never been even slightly overweight in my life. I was advised that I had to just accept “a little weight gain” to stay well. When I talked about the side effects that I was struggling with in appointments, I would always be told that I was tolerating the medication well.
I have lived in three counties over the past nine years, and one of the medications I was prescribed meant that I was supposed to have regular blood tests to check my liver and kidney functions. However, it seems to bit of a postcode lottery as to whether this is conducted, because all three of the areas did not follow this protocol. Looking back I should have queried why this was not being enforced to happen, but I was too unwell to even contemplate the risks that could be happening and would always be shut down by my psychiatrists or Community Psychiatric Nurse in appointments.
Care Plans, another of my favourite areas that seems to be lacking in any “care”; they are seldom followed even if they have been done. My understanding is that Care Plans should be carried out by a member of the mental health team for each patient once a year, preferably by the Community Psychiatric Nurse allocated to the patient. The patient is supposed to be given a copy too and has to sign it to say they are happy with what has been written in it. Care Plans are written down, they include many things such as diagnoses, medications, and sets out what to do in an emergency with the patient. In essence they are tailored to each individual. It stipulates who to contact in an emergency and their contact details. Somehow I managed to avoid having one done for five whole years, in three different counties. Another example of a severe failing I have received from the mental health services. Finally I had a care plan written up because of my mother’s pushing and with the involvement of an advocate. Imagine the people who don’t have family, partner’s or carers to help them. However, my last suicide attempt, the Care Plan protocol wasn’t even followed. I was picked up by the Police from Bristol suspension bridge the same day a woman jumped over with her baby; the mother had mental health problems. My mother was contacted at work by the police force where I was being held to tell her what had happened. They said that I was being held under a section 136. The police contacted the mental health team I was under the care of to advise them of my whereabouts. I was then upgraded to a holding centre for 48 hours. The mental health team did not contact my mother as was specified on my Care Plan and they had no contact with me for two weeks until I rang to request an appointment with them. My mother, yet again, had to take me under her full time care even though I was under the care of a trained Community Psychiatric Nurse and a psychiatrist.
After my last suicide attempt1 I was offered an antipsychotic injection. I was on my knees now, I had been trying to take my life for the last 15 years and all the concoctions I had faithfully taken prescribed by psychiatrists hadn’t stopped my symptoms. They wanted to inject me with this drug, leave me unsupervised living on my own for a week, then inject me with it again. I was praying that it would be the answer to everything. However, my mum and family were very concerned about it. They researched it and the side effects were hideous, worse than anything I had already endured from all the tablets. The one that scared me the most was the chance of getting a Parkinson tremor. The psychiatrist failed to tell me, like always, the possible side effects. My family discovered that I was supposed to be prescribed the medication orally first to see what my body could tolerate before being given the injection. I was not given this as an option either. This was my turning point and the end of the road for me to stop popping their pills. The mental health services were most unhappy about this and subsequently started making things really difficult for me. I wasn’t conforming.
It was about six weeks from stopping taking my medication that I realised at some point a hairdresser had feathered the front of my hair. What, when did this happen? I thought to myself. I have no recollection of asking anyone to do this, let alone being able to remember someone actually cutting my hair so close to my face like this. It was then that I felt very concerned about what else could have been happening around me in my life that I had no idea about. When I spoke to my immediate family members about it, they weren’t in the slightest bit surprised and shared other things that they had witnessed from me. I was horrified. It was like an awakening. They then revealed to me that my stance had been awful when I was taking Depakote. I would stand with my arms pretty much in front of my body like a monkey and I would even walk like this, almost monkey like. Apparently I would loiter in doorways wherever I was, preventing people getting through properly and I seemed to be completely unaware of my surroundings. My family said I was literally like “the lights were on but no one was home”. I was also told that people could speak to me and ask me questions and if they were lucky they might get a one word response because it seemed like I even struggled to manage that. It seems surreal that I even managed to get through any of my life in this medicated induced state.
For the past three years I have been attending mental health services waiting rooms to still see just a Community Psychiatric Nurse now as I don’t “warrant” (their words) a psychiatrist as I won’t take medication to help myself. I have in the meantime had my Community Psychiatric Nurse speak to my mum, my carer, behind my back to tell her she needed to convince me to take medication again. To be in the waiting room, but on the other side so to speak, without medication in me and to visibly see the haunting vacant stares from the people who are on medication absolutely breaks me. It is such a taboo subject and you are indirectly advised not to share with fellow patients that you are not on any medication.
It is now clear to me now that I have been given various diagnoses such as Bipolar, Borderline Personality Disrder, Dissociate Spells, Social Anxiety, Paranoia, Seasonal Affective Disorder, Obsessive Compulsive Disorder and Depression because my symptoms and behaviours fell across so many mental health conditions.
Looking back, I was trapped in a system that is, well there are no words to describe it. I was a human guinea pig, my mind and body were no longer mine. I had no hope, no identity, no meaning, no self worth, no passion, no personality, no creativity, no ideas, no dreams, no goals, no ambitions and my favourite of all time…. “No Capacity”. Capacity is the most banded around word within the mental health system. I am deemed not to have it. I think I’ve got capacity to decide to stop taking the medications which were in endless supply to me. I think I have the capacity to share my experiences in writing this. I think I have capacity to want to put this out there in the hope that this failing system can and will be one day altered. The myth of the “one size fits all pill” that can treat a variety of mental health conditions for all people, all ages, with every life experience behind them, just like magic. Magic pills from the magic psychiatrists. It grieves me to know that this is the reality for thousands of other people still. Still attending appointments to still be prescribed medication, I know their reality, I have walked it. Somehow, I survived.
- It sounds strange to people who don’t suffer with suicidal tendencies, it’s like one half of my brain is fighting the other. The side that want’s me dead will take me out and made me not care what my shelf life would be, I knew one day I would succeed and I fully accepted that. I had even picked a funeral song by Chasing Status “I feel so Alive” because I thought it would make people attending my funeral service happy…
[Editor’s note – this harrowing story is Carlie’s true experience. only her name has been changed to preserve her anonymity. I would like to add that after 6 sessions with me she is now back driving again, off all medications and drugs, and is considering looking for a job. She looks amazing, is amazing but still struggles with self-esteem. No surprise there. Trauma like this (on top of childhood trauma) is NEVER addressed in the psychiatric service and so people’s root causes are never resolved. Thank god there is another way. It is called ‘trauma therapy’ and it involves restoring the body’s connection to itself by allowing traumatic memories to be resolved bodily. once that happens the mindbody is fully able to heal it’s disconnect and restore wholeness. Stories like this just shouldn’t happen but they do. that’s why I wanted to publish this. one day Carlie will be teaching others bow to survive. For now this is her legacy]