Dr Sara is no stranger to mental health; she grew up in the grounds of a Psychiatric hospital and ‘returned home’ to learn that this may not be providing the safest of spaces to her fellow Muslims, or in fact, anyone struggling with mental distress. Here Sara bravely shares her journey within the NHS system; it’s downfalls and wisdom about how we might better serve our fellow humans to honour suffering and beliefs as they need to be honoured…
I remember being 11 years old and vowing that I would never work in a hospital.
Having now spent nearly 20 years working in and out of hospitals I look back and chuckle at the steely determination of that 11-year-old and wonder about fate and destiny and God’s plan.
My parents both migrated to this country and spent their entire working lives as nurses in NHS Mental Health Services. When I was born in the early 1980’s, we were living in nurses’ accommodation, on the grounds of a big old Victorian ‘Psychiatric Institution’. These institutions were often purposefully built in the countryside away from main society (as they felt the people in them should be kept away) but for us it meant living in nice houses in affluent leafy areas. My parents’ whole lives revolved around this place; their work, their social networks, friends, support, community, everyone was in some-way connected to the hospital. I remember Christmas parties and ward events in which as children we were occasionally allowed in, I was greatly intrigued by this weird and wonderful workplace. It didn’t scare me the way it probably would most children, I always felt honoured to be there, with a strange mix of sadness and excitement and an overwhelming sense that these people, for some reason, really needed to be cared for.
After a brief stint as a chambermaid and then at Sainsbury’s, by the age of 17 I was working as a Care Assistant in a nursing home that my dad helped to manage for adults with severe mental health issues, and have remained in the field ever since. I remember in one of the very first places I worked, I cared for an elderly man who recognised my surname, it transpired that he had been the manager of a ‘psychiatric ward’ that my dad had worked in the late 1970’s. It was an odd moment for us both, it felt like he had come full circle in the strange way that often happens in life and for me it felt like a validation that I was supposed to be there. I have that same sense now when I think about my career, that in some strange way, I have come back home.
In the years following, I got my degree in Psychology (still not wanting to work in hospitals) and continued working part time in Learning Disability and Mental Health facilities to earn money. I began to understand this world of mental distress a little better, not only by the people I was working with, but by becoming increasingly aware of close family members experiencing mental distress. I became aware of the cultural stigma’s around mental health and when my relative became so unwell that he needed support from outside services, I was faced with a barrier of silence and inaction from the family. I was the only one willing to acknowledge this situation, make difficult decisions, have difficult conversations, and face difficult truths. Looking back at this event I can hardly believe it happened. I attended a conference last year about being a ‘Stranger in a City’ in which it explored the research findings that if you migrate to an area in which you become a minority it is significantly more likely that you will experience serious mental distress. This was indeed what had happened to my relative, along with drug use (to manage the difficult feelings he was experiencing), complicated and difficult family relationships and history, lack of work/study, and social isolation, all created a traumatic concoction which resulted in him experiencing visions and voices of a scary nature. These ‘symptoms’ led to him being sectioned under the mental health act and having a long hospital stay, after which, he went back home to his country of origin. I am grateful to say that he has since reconnected with God and found his spirituality, given up the drug use and found some purpose and meaning to his life and is in a much better place now.
My journey with God started from a very young age. I always felt aware that the world we see in front of us isn’t all that is there. Despite not coming from a religious family, I went to Christian schools and so God was always a positive quiet presence in the background of my home and school life. I taught myself how to pray the Muslim prayers mainly in an attempt to pass my GCSE’s and hoped that if I prayed to Him properly, He would grant me that. My best friend and I were also always slightly intrigued (albeit very scared) of ‘other worldly’ things and would spend many hours wondering what else was out there. Looking back now I would say that I have always been ‘sensitive’ to other things that may be around, and from my Muslim faith I would interpret those things now as being Angels and Jinn, but back then I just had a sense that we weren’t alone. These early feelings solidified my belief in God, but the full connection lay slightly dormant until my late 20’s when it awoke with the jolt of a few difficult years of getting divorced, being diagnosed with Crohn’s disease, and applying for Psychology Doctoral training.
Having come from a very white middle class area in the leafy suburbs of Surrey to working in some of the poorest parts of East London, I’d had a massive culture shock. As a young naïve Assistant Psychologist, I met a Clinical Psychologist who wore the full length very loose black dress (abaya) and black head scarf (hijab). I had never met anyone like her before. She was my senior; confident, stern, held her own in very intimidating ‘psychology meetings’ and I didn’t know what to make of her. Although I was slightly scared of her I sensed that she saw more in me and made it her job to help me along my journey. I owe it to that sister (may Allah reward her) for gently pushing me onto the ‘formal start’ of my Islamic journey, she bought me my first hijab and I have not looked back since. All this happened at the time of the July 7thbombings in London. Although this had nothing to do with my finding God, everyone one around me thought that the two things were connected. That was the start of a huge identity crisis for me, which is maybe for another book! Not long after this I got accepted onto the Psychology Doctorate course, and so my journey with Islam and God has always run alongside my journey of becoming a Psychologist, the two are very much interwoven.
As I was finishing my Doctorate, I decided to take a post as a Muslim Chaplain in the Mental Health Trust I was working in to begin to bring together my skills as a Psychologist with my faith. This is some of the most rewarding work I have ever done, but it was also one of the most difficult jobs I have ever had (and I’ve worked in some very challenging places!) Although I was employed by the NHS, services generally were not really interested in meeting the religious and spiritual needs of patients in the most important sense. I would see Muslim patient after Muslim patient all in great distress emotionally, psychologically, and spiritually. I was there for 5 years and during that time I received large numbers of referrals regarding issues around Jinn, Evil Eye and Black Magic. By this time, I had been working in Mental Health Services for nearly 15 years and what was becoming very apparent to me was that the system we have does not work for the majority of people who use it. In fact, most people with severe difficulties stay in the system for most of their lives, often becoming more unwell from the side effects of the strong medication. I was shocked to find out that there are a lot of research papers and national reports that spell this out in black and white and say that the system is unsustainable and needs to change, it devastates me that even years after many of these reports where published I can see no real change in the culture of how we treat people in distress, and in some situations it is now worse. I was even more devastated to find out that there is also a lot of research to back up another distressing thing I was witnessing daily; that the system is even less likely to work for you (and in many cases abuse and neglect you disproportionately more) if you are from a black or ethnic background. I had become traumatised by years of watching patients in mental distress be treated worse than animals. People were treated like they were a problem, like what was happening to them was their fault, like they were not human anymore, they were neglected in their hours of need, or worse they would be medicated to silence their distress. The knowledge that this was intensified if you happened to look like me or my family, is heart-breaking. Whilst the medication can sometimes help with some of the symptoms, it certainly is not the cure. Every part of my being told me that this was not purely some physical disease, but that these people had gone through – or were still going through- something terrible in their lives and for whatever reason had not recovered. I knew in my heart that the healing would come through listening to and understanding their distress. I also learned that not only was the way that we treat (all) people with mental distress traumatising to me, but that after 20 years I was traumatised by the institutional racism that affects both the patients and me as a member of staff.
As my faith in the mental health system began to rapidly decrease, and my knowledge of more psychological and spiritual aspects of mental health increased, and at a time when I thought I was not going to be able to continue working in the NHS mental health system as it is, I was guided to a model called Open Dialogue. In the 1980’s Finland had some of the highest rates of people who were experiencing severe mental distress; seeing and hearing things that others couldn’t and having unusual thoughts and beliefs, that they decided to try something different to the predominant western model and eventually ‘Open Dialogue’ evolved over the following years. Whilst I cannot fully explain the model here, I hope to express some of its essence; this model is based on the notion that whatever someone is expressing when they are in severe mental distress – even if we can’t understand them – is meaningful. That the things they see and hear, the strange and unusual ideas and beliefs they have, are connected in some way to a distress or trauma in their lives that they haven’t been able to process and move on from – essentially they have remained stuck in their distress. This model works with the person and their whole family/network, it’s a model based on equality as humans (removing the clinician as expert dynamic) it seeks to provide help as soon as possible and for as long as the patient and their family need it. The principles are best described in non-technical terms as compassion, mercy, love and kindness – hearing and holding everyone’s different views and distress and pain and providing a space for families to process life’s difficulties, to understand them and begin to heal. My heart knew instantly that this is the way we should be working with anyone in mental distress, it reminds me of the verse;
“ ‘Bismillah ir Rahmaan ir Raheem’, God is the Most Merciful, the Most Kind, the Most Compassionate”
…a phrase we Muslims use many times throughout the day but unfortunately rarely practice. Sure enough, over the last 30 years the hospital in Finland has gone from 4 wards down to 1, it has some of the best results worldwide for working with the diagnosis psychiatry calls ‘psychosis’ and have proved that with a model that treats the person (even the most severe) as being in a meaningful state of distress, people who have been unwell for many years have made a full recovery, without the need for life long medication.
Whilst working with Muslim communities I slowly began to make connections with all the things I had learnt in the last 20 years. As a Muslim I believe that every human is made up of a physical body, a life force (Ruh), a spiritual heart (the ‘Qalb’ our control centre that houses our thoughts, emotions, intentions, intelligence, reasoning and direct connection to God- Fitrah) and a soul (nafs – the part that drives the other parts). I believe that part of the test of this life is to learn to control our soul and work on developing it to be the best version of itself as it has equal potential for good and bad. I also believe that we have an enemy called Satan who waits for us at every turn ready to trip us up. As a psychologist I believe that every human (and all its parts mentioned above) are impacted greatly by the events that happen to it, how it experiences life, relationships, love, trauma, God, and that all experiences form lasting effects on the heart, body and soul. If those life experiences combine in a negative way, for example a child is born with a very nervous nature, they are then abused by a person in a position of authority- perhaps a family member – and as they grow older this causes them to disconnect from God and become angry at why God let this happen, Satan continues to whisper negative thoughts about them lowering their sense of self-worth, and then one day they lose their job after many of life’s struggles, or get divorced, or fail exams, or face a close bereavement, what do you think would happen? I think life would become very hard, thoughts would become very dark, and that connection to God becomes clouded – even for people who are praying 5 times a day.
There are themes to the tests in life that God tells us about in the Quran, He will test us with fear, and loss, and death, and poverty, and Satan tells us how he will make it all far worse. A slow build spanning years, an unfortunate combination, and a final straw can make a person who appears on the outside as a ‘good decent Muslim from a good family’ suddenly crack and dismantle from the inside until they are unrecognisable and incomprehensible. If you add to that our beliefs in black magic and evil eye, jealousy and envy, you have the perfect recipe for extreme mental distress.
By now you must be thinking why on earth would God put us through all of this? What is the point? The point is that it is the purpose of this life, to go through pain and distress in order to purify our hearts and souls and connect to God in the purest way fully subservient and humble. This is known as the ‘greater jihaad’ or the ‘great inner struggle of the self’. To pull ourselves back to God despite the things that happen to us. Every pain is to bring us closer to Him, many of my clients have told me that in their darkest days of hearing voices and seeing things was also when they were the most aware of God’s existence, they could feel the other world and often became very religious in those moments.
But I believe there is also another reason for all this distress, that these tests are for us as an Ummah too, and they are here to help us elevate as an Ummah. If our Ummah could learn to treat our brothers and sisters who have severe mental distress with compassion, mercy, love and kindness, we will surely rise to take our status of being the greatest Ummah of all.
Last year, my aunt (in another country) who had lived most of her 50 years in a psychiatric hospital, died. The pain I felt upon her death pierces my heart every time I think of her. I won’t list her traumas here, but you must believe me that there were many. There were difficult family relationships, there was a lack of understanding and an unwillingness from the family to see that they would need to change their ways to heal this, maybe even some black magic thrown in, and suddenly there she was – a teenager seeing things, hearing things, screaming, crying, hysterical and angry. But also, funny and bright and beautiful, she could speak 3 languages despite having to leave school because of the ‘illness’. She became the ‘ill one’ for decades until finally at age 50 she gave up on life and slowly just stopped living, and God took her soul. The pain for me is on many levels, I have spent my career caring for people like her but could do nothing for her, I learnt a model of treatment that had the potential to heal her but I couldn’t offer her that. I can see all the family issues but am too distant to help. Her once beautiful face taken away by the years of torment and strong drugs will always haunt me, but it also pushes me to keep going.
It is no coincidence that both my parents were mental health nurses and that I was born on the grounds of an old psychiatric hospital, it is no coincidence I have many significant family experiences of severe mental distress, it is no coincidence that I found Open Dialogue in this big wide world, and it is no coincidence that I am sitting here writing this story. I feel connected to my fate and put my trust in God, He has brought me here to this point and will continue to guide me if I ask and listen.
I now march side by side with a growing group of people from all walks of life, all faiths, all colours, all races, standing together fighting to change the western model of mental health care. To remove it from the medical world of diagnosis and drugs and individualistic treatments, to a more holistic compassionate approach which values psychological, spiritual, social, relational, natural approaches to healing alongside medication and 1-1 treatments when needed. An approach which offers space, time, community, and healing. An approach that understands that it’s not just chemical imbalances, or only thoughts and feelings that have been affected but that it is also a person’s connection to God. I believe as a Muslim Psychologist and Compassionate Mental Health Activist that people can lose their way in life’s trauma’s big and small, and they need help from us to find their way back, and that it takes a community and many different approaches to do that. As an Ummah we have to be prepared to hear the horror stories and change our ways, to not judge and condemn, to not ignore or deny, to not mock and ridicule, because none of us (or our families) are immune to experiencing mental distress in any way, but to listen and support, to be just and caring, to give time and understanding, and because;
“Whosoever relieves from a believer some grief pertaining to this world, Allah will relieve from him some grief pertaining to the Hereafter”. Sahih Muslim.