I regularly go to my local pharmacy to pick up my antipsychotic. When I do so, I try my best to behave like a Perfect Example of a Functioning Human Being. I try to give off the vibe that I work, and have a functioning family. I do this because I know many people don’t expect people on medication like mine to fulfill their expectations of what functioning means. It is my privilege to show that I can.
The text below was written by Jai; I feel privileged to have read it, and privileged that she has allowed me to share it on my blog. Please do read this; it’s an important, intelligent and thought-provoking piece.
NHS Warrior: not just a survivor
So what made me want to share my experience? The honest answer is that I’m not entirely sure; all I know is that I need to share. My heart breaks for our under-resourced NHS, for the lack of understanding of appropriate response to the emergency of trauma (in my experience at least), and for the injustice of the further unimaginable suffering caused by this. My intention isn’t to attack the NHS; equally, something drastically needs to change in how we respond to mental health needs of trauma survivors.
I question why my GP didn’t pick up that something was wrong when I first presented at the surgery with insomnia and anxiety as a child (many years later, I would recover memories of childhood abuse), or why no support was offered when my sibling took their life during my teens? The eventual breakdown during my second year at university was another missed opportunity. I had to see the university counsellor to explain the situation in order to be able to come back the following year; on reflection, I’m surprised that he didn’t recommend some sort of continued support on my return.
During my early 20s, I pushed for counselling (against the wishes of family). I knew that something was very wrong but didn’t have the knowledge or tools to begin addressing it. I was given some limited sessions of CBT (cognitive behavioural therapy) with a wonderful practitioner. These sessions enabled me to start challenging some deeply held beliefs and conditioning, and set me on a journey of personal development. I was able to begin to face some of the pain of losing a sibling in such a violent manner. Unfortunately, these sessions were not sufficient to deal with the impact that multiple traumas were having on my nervous system, and the physiology of my brain.
I’m saddened, recounting my experience of mustering up the courage to seek help as a late 20s adult who had recovered memories of childhood sexual abuse. At this point, I had become friends with the CBT practitioner. She advised me to tell myself that the story of abuse was not going to impact me, and that if I wanted, I could have 5 counselling sessions with her; however, this would mean that we could no longer meet as friends. She also advised me against seeking help via the local Mental Health Trust, and told me that it wasn’t a place for me.
As much as I wanted to follow the practitioner’s advice, my symptoms were so severe that it became clear to me that a cognitive approach would not be sufficient to manage them. I approached my GP; her response was: ‘Are you sure you’re not imagining it?’ I had shared my opinions on her inappropriate response and requested a professional referral for help. I found myself walking out 10 minutes into the clinical psychiatric assessment that followed, in a further traumatised state. I didn’t return to my GP, nor did I receive any follow-up on having walked out of the assessment. I tried to find other means to help me deal with the flash backs, anxiety, insomnia, nightmares and all that went with it.
A few years later, I experienced my second dose of PTSD. A sudden bereavement caused me to spiral into despair. I couldn’t distinguish between this death and my sibling’s death. I was having flashbacks, extreme sensitivity to light and sound, and was having persistent thoughts that my friends and family were going to start dropping dead around me. I was walking around in a terrified state, frozen in a state of emergency.
My adult self knew that this wasn’t logical and that death is a natural process, but my mind and body was hijacked. A fear of being sectioned prevented me from sharing these details with a new GP (at the same surgery). I did eventually seek help from the GP (in a visibly distressed state). She assumed that I was having a tough time dealing with the latest bereavement and prescribed medication. I weaned off the medication a few months later but received no form of counselling/therapy/further support. The quick fix medication and failure to investigate my history is probably a reflection of the GP’s time constraints more than anything else.
I hear people say that things were different ‘back then’, and it’s all changing now. There is much progress in changing the conversation and stigma around mental health; the ‘Heads Together’ campaign, spearheaded by the young royals is a testament to this. But what happens once a person recognises that they need help, overcomes their fears, and reaches out? It seems that the war isn’t won yet; that’s just the first battle.
I am devastated and shocked beyond belief when I recount my experience of the last 9 months since my trip to A&E. I feel I must share it in some detail but worry that I may not be able to communicate the full extent of the horror of the experience or the strength of my concern for people in a similar situation to mine.
9 months ago, I woke shaking and jerking violently, and was taken into hospital. I didn’t understand why the doctor was asking me if I was experiencing trauma. Nothing made sense. All I knew was that I had been having intense chiropractic treatment following a car accident I had in 2015. In 2016 I started experiencing vertigo, memory problems, and issues with balance and my ability to judge depth of stairs when I walked. I also experienced additional neurological symptoms such as a heavy left eye and the sensation of cool running water down the left side of my head. As far as I was concerned, the shaking and jerking was connected to the treatment. I had already been waiting 3 months for a neurology referral at this point.
When the A&E doctor asked me if I had ever experienced trauma, I shared that I had, and he asked a psychiatric doctor to meet with me. Once the psychiatrist had ascertained that he was confident I wasn’t suicidal, he endorsed my pending neurology referral, gave me a muscle relaxant and advised me to meet with my GP the following day. I was discharged with a ‘single point of access’ number scribbled on a leaflet and advised that if I needed to contact mental health services, I could call that number and someone would visit me at home within 48 hours. I left the hospital in a confused and frightened state, still shaking and jerking uncontrollably.
The following day, my GP (at a new surgery) was as confused as I was. I was prescribed more muscle relaxants and told that he would chase up the pending neurology referral and make an urgent request. I was once again asked whether I had ever experienced trauma, and I shared that I had experienced abuse as a child.
I contacted the single point of access number that the hospital psychiatrist had given me and was advised that I didn’t fall into their ‘area’ but that they would pass on my details and it could take quite a while. I decided to contact my GP and request a referral to increase my chances of being seen sooner rather than later.
Numerous GP visits and telephone calls ensued, chasing the neurology and psychiatric referral.
The weeks and months that followed were torturous. I wasn’t able to work, still shaking and jerking uncontrollably, experiencing a burning sensation in the back of my head, my cognitive functions were severely compromised, I had developed additional symptoms similar to tourettes, and my mental health was terrifying. I found myself pacing in the local park, crying and telling myself that ‘I choose to live’. I had no idea what was happening to me.
I had my first appointment with the neurologist a further 3 months after my A&E visit. An MRI and EGG test later, the neurologist confirmed what he suspected on my first visit to him: that it was more than likely that I was having a trauma response. For the second time, he recommended an urgent psychiatric referral. It had now been 6 months since my visit to A&E.
In parallel, I had been chasing the psychiatric referral with the GP surgery and was receiving mixed messages: yes a referral had been made and chased; no a referral hadn’t been previously made but it was made now (4 months later); the referral had been made but the hold-up was on ‘the other side’ etc. I decided to take matters into my own hand and obtained details of the Trust the referral had supposedly been made to and contacted them directly. Again, I received mixed messages: yes a referral was received months ago, I apologise profusely and will get someone to contact you; no we haven’t received a referral.
By now, I was running on empty; the stress of chasing referrals exasperated my symptoms. The GP’s comment that ‘a referral won’t be magic; you need to try too’, left me dumbfounded and confirmed to me that my GP had no understanding of the challenges I was facing.
In total disbelief, I contacted the commissioner for my borough’s Clinical Commissioning Group (CCG). The conclusion of this avenue of investigation was that the Trust confirmed that they had not received the referral but that any referral would be declined on the grounds that my GP’s and my own postcode were not in the same borough as the Trust. He advised me to contact my GP to find out who the CCG was for the surgery, and that they would support me. It had now been 8 months since my trip to A&E. My postcode was in fact in the same borough as the Trust, so I wasn’t very impressed.
But wait, it gets better. I made a visit to my GP and sat down with the secretary to try to get to the bottom of the mess. She called the Trust in my presence and they confirmed that they hadn’t received the referral as they don’t take referrals by fax; instead, she should submit a ‘single point of access’ form. This then begs the question: how was this not discovered when they previously chased the referral?
I sat with the secretary and completed the said form. I also discovered that the referral that had been ‘faxed’ to the Trust was factually incorrect and didn’t communicate the urgency of my situation. It read that I was having a ‘shaky feeling in my body’ and that I had a childhood trauma that I wanted to speak to someone about. My body was in fact shaking and jerking uncontrollably, I was experiencing severe anxiety and despair, and I had requested help to figure out what was happening to me – I hadn’t actually asked to speak to someone about childhood trauma. I couldn’t believe that I was sat there amending my own referral text, requesting urgent help.
I had recovered enough of my cognitive function to be able to do this; despite the anxiety I was experiencing while amending the text. What happens to people who aren’t able to do this? My experience of advocacy services was that I ‘didn’t fit the criteria’. It seems that the service didn’t understand the complexities of PTSD and how it might limit a person’s ability to advocate.
9 months after my visit to A&E I now have an appointment with the Trust. I have no idea whether they will be able to help me. It has been 9 months of hell. I have heard many tragic stories of people taking their lives while waiting for help. It seems that timely mental health support is mostly available for people who can afford private care. I worry that we as a nation are failing people that have already been let down, and the injustice of it is suffocating.
It would be remiss of me not to mention the anti depressants that I was offered whilst waiting for my referrals to come through. On reporting the intolerable side-effects I was experiencing from taking the prescribed medication, the GP asked me, ‘what do you want me to do?’ To which I responded, ‘I don’t know? Maybe I should try another one?’ His response was ‘which one? – quickly’ I hope anyone reading this can feel my pain. I don’t doubt that the GP is a good guy doing his best with the pressures he faces, but his understanding of, and approach to mental health needs falls way short of adequate. (In case you are wondering, I did make enquiries about changing GPs but postcode issues would mean starting the referral process all over again).
There is a desperate need to resource our front line carers to be better trauma informed, so that we can have appropriate interventions and early interventions that are appropriate. Maybe then, instead of constantly fire fighting, we might have a chance at taking some of the pressure off our already overburdened Mental Health Services. Who knows? Maybe our Physical Health services might benefit too? I hear the two are linked. What about the economy? I know that I desperately want to be able to work again.
As someone who has battled hard to overcome many challenges over the years, and holds the desire to contribute positively to society – I don’t want to give up. I don’t want to become another tragic statistic, and I don’t want to vanish away under the weight of the scary symptoms and isolation that accompanies them.
I will always be grateful to: The Samaritans; Rethink Mental Illness; and Survivors of Bereavement by Suicide, for their professionalism and compassion whenever I called them in despair. Another national mental health charity was not so helpful (in my experience), but maybe that’s a story for another day …..
A thank you to my friends – you have kept me alive.
It’s taken a while for me to get around to this post, because I wanted to be sure that it would stay true. I realised today that there is no way of knowing whether it will stay true and maybe this is all the more reason to write it now, while it is.
I know I’ve written a lot about what running means to me, but let’s recap. I moved home from Edinburgh, extremely thin, in 2012. I started running in an effort to lose even more weight, and in doing so became quite good at running. Because I wanted to continue to be good at running, I allowed myself to eat again. I became extremely fast. I ran some races. I did some Parkruns. I started to feel good about myself. My body, a longstanding enemy of mine, was becoming my friend.
I broke my ankle in 2014. To be truthful, I was already falling out of love with running at that point, thanks to other stressors and symptoms of what I was going through. But the knowledge that I potentially wouldn’t be able to run was upsetting, and as I went through my physio I did the occasional jog when I was allowed.
Forward again to 2015. Maureen bought me my first running watch, and I completed my third and fourth half marathons. The times I got for these were not super speedy and to be fair, I didn’t train enough to earn super speed. But I completed them. I was proud but I was also disappointed in myself, because I knew that choices I had made had had a huge impact on my running speed and I felt I had let myself down. In some ways I found myself disheartened. Slowly, I more or less stopped running again.
Until now. I joined Run Dem Crew earlier this year. We run once a week to various points of interest within London, and the point of each run is the atmosphere and community, as much as the running. It has a good energy. Since I started, despite no longer being the fastest, despite negative thoughts I have about my body, my love for running has been sparked up again.
I never thought running in a group would work for me… I was very much a one woman operation. Now I realise that the nights I go out with a group- Tuesdays and Thursdays- are nights I do not miss, because even if only one person notices, that’s one person more than just myself.
There are much faster people than me but when they tell me how fast they are, although I can certainly be happy for them and impressed, I am trying not to compare myself so much to them. And more importantly for me- I am trying not to compare myself to myself anymore. That’s where all the self doubt comes in. Now is not the time for that.
I’ve set myself a target. I am reluctant to put it out there , but maybe I procrastinate because I am giving myself the option of backing out. So before I can do so, here it is:
I want to run the Hackney Half AND I want to be happy just for finishing it. To do both of those things will be equally difficult.
I am dedicated to this target.
This time last year I was in one of my darkest ever places, and I didn’t think I would carry on. I tried to not carry on.
Thinking of that time now, guilt and sadness settle on me like a blanket it’s hard to creep out from under.
But I also realise this: in surviving, in getting through it, I made a commitment to being alive.
Over the summer, I suffered a pretty serious episode and it made me question that commitment (I wasn’t actually certain that the things in my life were real to begin with). Even so, I clung on and I’m still here.
In some ways, I’ve been coasting the last few months, doing nothing especially exciting, nothing especially interesting, in terms of what I actually plan to “do” with my life. This month I’ve been looking at PhDs, and other possibilities for my future. It isn’t a “new year” kick. It’s more of a year-that-might-not-have-been kick. I am renewing the commitment I made last year to being alive, and not just to being alive but to living, to thriving.
This is a simple gratitude post.
Today is my 31st birthday, and it’s been special. This time last year I also had a wonderful birthday. Around that time, I wasn’t in as good or as stable a place as I am in now, and I am hopeful today that my new year will be a calmer one. I have beautiful people around me and everything to live for through this new decade. The simplest things can be wonderful, and I am happy.
Thanks to Arcticblizz for suggesting the first topic.
2017 was a mixed bag, like most years. Like every year spent with M, it brought love and peace. In terms of my mental health it was a nightmare, the kind of which I feared I would never wake from. But here I am. I’m borrowing a prayer for this post; although I’m not much of a one for “proper” praying, I do like this one.
The serenity to accept the things I cannot change
I have learned, and keep learning, that there are things about myself I cannot change. There are symptoms that are likely to return to me time and again, although medication helps me manage them. I have learned the hardest way that I have to accept medication as a part of my life. This is incredibly hard to accept, despite repeated experiences to back it up. Without accepting it, I run the constant risk of a return to unwellness, something that terrifies me after a summer that reminded me ruthlessly of how it feels to be paranoid and depressed in the wake of elation. I have to accept that elation for depression is not a reasonable exchange.
There are also experiences I have had that I need to remember I cannot change. I have been going over certain things in therapy that I find it difficult to think about, let alone talk about, but it is only by thinking and talking about them that I will be able to accept them. This is not about accepting that “these things happen”, or trying to “think positively” and pretend the experiences can be magicked away by this. For me, it is about accepting that some things shouldn’t happen, to anyone, and using my personal experiences as a starting point for effecting change. But before I can do this, I need to accept that these were my experiences at all.
Finally, there are things I must accept are intrinsic to who I am, and accept that they are not “problems” or things I should obsess over changing. For example: I am and have always been quite sensitive to how other people are feeling. I have often thought I am “too sensitive” and seen this as a weakness in myself (or had it treated as such by others). But it isn’t a weakness and I cannot change it, though I can learn to deal with its impact better/ differently. Accepting this is hard, but necessary.
The courage to change the things I can
Both of the things I have talked about above: mental health and negative experiences, are things that I cannot change. This absolutely does not mean that I should remain inactive. People often conflate acceptance with inaction (i.e. I have accepted I am a certain way, so I should do zero to try and change it, because it’s inevitable). This isn’t the case. I think acceptance is an action in itself.
It takes courage to accept that my mental health problems are not going away, and then use that acceptance to take action. These actions can be simple-sounding: take medication, for example. Without these actions I am unable to bring about change for myself and, by extension, for the people around me. This means there are things I need to change. I need to be able to talk about how I’m really feeling. I need to be able to step back when things are too much. I need to be able to maintain my stability by making an effort to do the things I know are right for me. These are actions, and they are things I can change, or continue to do.
Some of the things I want to do: sharing experiences, maybe volunteering to help others who have been in similar boats to me (no two boats are the same), are going to take courage. They are also long-term goals- I have to weigh the importance of achieving them, with the impact they will have on my own wellbeing. These are outward changes I want to make- it’s not about changing myself, but about changing the world around me in some small way, for the better.
There are so many things I want to change. Change can be tiny. It doesn’t have to be world-changing, but it can change a little pocket of the world- even one person, or one environment- and this is what I want to do. So I have to be brave, and also cautious.
The wisdom to know the difference
As I said above, I don’t necessarily think that “things I cannot change” are things I need to blindly accept and never challenge. They are things I can work with, and live with, and manage. However, they are different to the things I can change, even if they act as a starting point, something that spurs me on. This is something I need to hold in my mind, to keep them separate even as they feed each other.
These are my hopes for this year, and for my life in general.
(Other things I hope to achieve include: speaking Swahili at basic conversational level; completing a piece of writing I am hoping will help people; reading at least 4 books in Dutch).
It’s almost 12 months since the last time I smoked. As the days draw closer to the 7th of January, I start to feel excited. I think I’m going to make it.
I started smoking in 2013, on a psychiatric ward in Kent, in the rain and freezing cold. The other patients offered me their cigarettes and I would say yes: to be polite, to be sociable, and for something to do. Fresh air was looked upon with vague suspicion but smoking? Smoking was something that could be understood. And so I smoked.
When I left the ward, went back to my ordinary life and my MA, I decided to quit. Who knew this nicotine thing was so addictive?
It snowed all that January, and I would smoke in the back garden, listening to sad music and pondering life. I felt like a cliche, a retrospective of stereotypical teenage angst, but it soothed me. Given that I had been hospitalised for being suicidal, the health issues caused by smoking seemed the least of my worries. Granted, I felt guilty for my new habit. I felt worried about the state of my teeth. But I also felt a relief I didn’t get from anything else at that time.
Someone told me smoking uses similar techniques to the breathing techniques they teach you for managing panic attacks, and that makes perfect sense to me.
Who knew I would live to do it for four more years? Two hospitalisations later, I was still breathing in the smoke, exhaling slowly, like it was sacred.
This year, four days after my 30th birthday, I decided it was time to give up for good. One day at a time. It’s been a lot of days now and although the cravings do hit me, I don’t regret the decision. And I don’t regret having smoked in the first place, either. There’s no point. People in desperate places make desperate choices, and I did. And now I know I have the strength to do this, I have more faith in myself.