Injury and trauma

My mental health difficulties started as a young teenager. In secondary school, I noticed a change in my thought processes. I was not able to think clearly. I started to hear voices. This escalated until I really struggled to think and concentrate. I ended up very confused, constantly distracted and paranoid of others. I did not understand what was happening but I knew it was not right. My mood spiralled downwards. I was not able to sleep and isolated myself from family and friends. By that stage the clock was counting down as to when I was going to break. The school was alerted to a problem with my mental health in early 1993 when I left the school premises during school hours. I was asked a question by a teacher, stood up, shouted at her and ran out the classroom and the school. A few hours later, I returned to the school and tried to downplay the incident saying that I felt stressed about the impending exams and was a little tired. This was behaviour that was completely out of the ordinary in my case but the school decided not to pursue the issue any further.

By the following April, I was very depressed and agitated. I attempted suicide over the Easter break and was subsequently brought to the child psychiatric services in Drogheda, County Louth. I was one of the first patients to be seen in the new child and family centre there. In early May, I was admitted to the adolescent unit at St John of Gods in Dublin for observation and assessment. Five weeks later my parents were called to a meeting to discuss the results. At that stage my parents were not given a definitive diagnosis. All that was said was that I was showing signs of a ‘serious mental illness’. To balance that news my parents were told that there were a number of positive aspects in my case, which could be significant in the long term. These included level of intelligence, creativity and personality. Alongside this it was noted that I showed a good level of insight.

For the following 2 years, I was medicated for the symptoms of schizophrenia and regularly attended a child psychiatrist. I was admitted to the hospital in Dublin a number of times in that period. I was unable to attend school and did not have any recognised educational qualifications.

As an in-patient in the child service I had access to a team of nurses, an occupational therapist, a psychologist and a psychiatrist. I had a daily timetable of activities but the child service was not perfect. My in-patient care was in Dublin. My out-patient care was in County Louth. Any progress that was made while I was an in-patient was fruitless because I was discharged into a social, developmental and educational void.

At 18 years old, I transitioned to the adult mental health services in County Louth. I had a psychiatrist, luckily a good one. We bonded over the medication bible and learned to trust each other. The medication bible is what I called the book that listed all the medications on the market. My psychiatrist produced the book each time I needed a change in medication, which was often. She would carefully sift through the pages, study the options and then make suggestions. I could recall the names of all of the medications I had taken in the child service, the dosage and if I had a bad reaction to any of them. This helped in the adult service because my psychiatrist could use that knowledge to decide, which medication would be suitable to try.

It was a classic bio-medical model of care but, to be fair, that was not my psychiatrist’s choice. She did not have the power to employ a psychologist in the local service. She could not provide access to education courses for me. She could not change the culture of discrimination, which existed at that time. What she could do was make sure that we tried a lot of medications with the hope that we would find one that helped and had little side effects. I use the pronoun ‘we’ when I discuss my experience with medication over the years because I was always included in the decision process.

Medication was always troublesome. Side effects ranged from mild to severe. I reacted badly to a lot of the old and new medications on the market. For example, with one medication my joints froze, another impaired my vision, I gained weight, lost weight, became more depressed, lost my balance, slept too much or slept too little. Some medications alleviated the symptoms of the illness, some made no difference whatsoever. The trick was to find a balance between the alleviation of symptoms and side effects. It was a long road to find that balance.

Alienation and annihilation of selfhood

Between 18 and 24 years old the story repeated each year. I was admitted to the local psychiatric hospital for 3 or 4 months, sometimes twice a year. I spent all but one birthday in hospital over a total of 8 years. As an out-patient in the adult service, I attended the weekly clinic and continued to take medication.

There was an emotional impact of both the child and adult services but I found the adult system more hostile. I was legally an adult but I was still a child in need of protection. The child service had a more caring and individual approach.

The age range of the adolescent ward was 12 to 20 years old. In the adult hospital, I was locked in an environment with an age range of up to 70 years old, which was frightening. I nostalgically refer to those early years in the adult system as the David Attenborough era because I felt like an observer who was given access to a world I did not belong to. Moving into the adult service felt like starting a waiting game: I waited for time to pass or for a day when I would have enough courage to end it all with suicide.

It was an ongoing struggle to hold onto some sense of self-worth when everything around me was telling me to give up and accept the bleak circumstances. I think staff in the adult service would have described me as quiet, helpful, pleasant and compliant. Privately, I was feeling lost, scared, angry, trapped and invisible. At the same time, I was quietly hopeful that the situation would improve. I was clearly consumed with a lot of contradictions, which were difficult to make sense of and had nothing to do with the symptoms of an illness. I was simply caught between opposing realities: the memory of the reality before I got ill which was positive and progressive; and the reality I was stuck in which was relentless and unforgiving.

Transformation

The chance for some relief from that situation appeared on the horizon with three consecutive changes. I call them my golden triangle. The first was the introduction of Olanzapine to the Irish market. I was the first patient in the local service to test the new medication and within a few weeks I was a different person. I had more clarity and consciousness. The side effects were bearable.

Shortly after starting this new medication, I received a series of sessions with a Psychology Fellow in Beaumont Hospital in Dublin. In six 1-hour sessions, I transitioned from being a patient to being a person again. It was a complete liberation and validation of my mind, which gave me an unprecedented level of confidence in my ability to recover.

Another significant change occurred in 2001. I was accepted onto a short return to education course in the adult education centre in County Louth. That course turned the key and unlocked the door to my future, a new and hopeful future in the education system.

I followed the short introductory course with a 1-year general studies course (NCVA) and a 1-year Leaving Certificate course. Following the Leaving Certificate results in August 2003, I was accepted at university to undertake a BA Degree. I completed the degree in 2006 without delay. I then completed an MA at another university. I have since completed my PhD. I have not been hospitalised since 2001, although I still slightly panic when anyone suggests that I need a ‘rest’.

Reconciliation and recovery

When I returned to education I had one simple goal, which was to provide an example to society of someone with a mental illness starting at the lowest qualification point and progressing to the highest point through our educational institutions. I had everything I needed at the time, which was faith in my ability to succeed. Perhaps a somewhat naive or blind faith but it has served me well so far.

The overall benefits of returning to education were huge. I thrived in a learning environment. I felt more connected to the world. Formal education provided me with the vocabulary and critical thinking skills required to communicate ideas and analyse problems in the hope of finding solutions to those problems. Through education I was able to redefine my experiences in a more positive way. I was able to build a new context for mental illness, challenge negative attitudes and try to highlight the need for better support for young people with an enduring mental health issue across the entire country. I would like to share some recommendations based on my lived experience of mental illness, service involvement and recovery.

Recommendations

1. 1. Extend the child service officially beyond 18 years old and build an intermediary system specifically around the needs of young people across the country. At the heart of the service should be full recognition of the transition from childhood to adulthood. The current system is problematic because it gives priority to a mental health diagnosis and pushes other important transitions into the background.

2. 2. The CAMHS training curriculum should mirror the new system. In my case, it did not make any sense, professionally or humanely, that my child psychiatrist was able to treat me the day before my 18th birthday but not the day after. It makes more sense that practitioners are trained to be person-centred or care-centred, irrespective of age, rather than the current system, which is service-centred. Basically, authorities have a choice about whether they want a system that focuses on mental illness or the mentally ill. The current mental health system is constructed in such a way to give mental illness a louder voice in the service than the mentally ill. As a result, young people are at risk of being damaged severely before they reach adulthood.

3. 3. Provide a child service in every area of the country with both in-patient and out-patient care. Stop sending children to Dublin, Cork or Galway for in-patient treatment. It is not fair and it is not progress, certainly not the type of progress I think is necessary in the 21st century.

4. 4. Develop a youth mental health system that can lead to third-level education, employment, independence and security in adult life. The system should maintain a young person’s confidence and abilities in the first instance and build on them from day one of interaction with the services.

5. 5. I recommend that a dedicated liaison programme is developed in order to build communication across institutions and organisations involved in youth mental health. This would mean that a dedicated group of people are employed to act in the health, social and vocational interests of the young person whether that is to identify care options in their area, identify routes to education and source funding, routes to employment, social welfare support and housing. The key is to identify obstacles and help the young person overcome them and develop new links across the different sections of our institutions so that recovery from mental illness is recognised, welcomed and encouraged in Ireland. In my case, it was not easy to do everything on my own over the years so that is why I strongly believe that young people with a similar history of illness need help to relieve some of the pressure and stress experienced while trying to recover and reintegrate into society.

Obstacles to recovery

In spite of the challenges I have faced within the mental health system, I have continuously stated that this system is not to blame for all of the problems faced by young people and adults with mental health problems. Let me address some of the broader attitudes and obstacles I faced over the years. These examples are lessons to service providers and society as a whole.

According to regulations, I was unable to access a formal education programme until at least 21 years old via the adult education system. I was unable to access a university course until 23 years old as a mature student. I was refused access to social and education services by a youth organisation because I came from the wrong demographic. I was refused access to courses by a major disability organisation because I had a mental disability not a physical disability. My mother was told that because my mind was ‘broken’ it was pointless trying to educate me. In fact, access to the first educational course in 2001 only happened because my family demanded that I get a place. At an interview for one course, I was asked what guarantee could I give that I would stay on the course and not take the place of someone who does not have a mental illness and deserves a chance. Clearly, the assumption was that I did not deserve a chance as much as other people. This unapologetic attitude from authorities and institutions continued throughout my time at university.

I was interviewed by a disability officer because I was registered as a student with a disability. After the interview, in which I provided a lot of personal information, I was informed that there were no services or supports for students with a mental health diagnosis. I soon discovered that within the education system in Ireland students with a mental illness were stigmatised because of the ‘hidden’ nature of their disability. This stigmatisation manifested in a variety of ways.

For example, the European Social Fund is used by universities to offer financial assistance to students who meet the eligibility criteria. The allocation of this funding can be arbitrary and discriminatory. On one occasion, I made an enquiry at university regarding an application for financial support from this fund (ESF). The person in charge of the office looked me up and down, laughed heartily and said ‘you don’t look disadvantaged to me’ and then closed the door in my face. I was embarrassed because a friend was standing beside me. I was also disheartened by the dismissive attitude of this person who was employed to support students when they had the courage to ask for help.

Even though this reaction to my enquiry for financial support at university level angered me, I had a policy never to be rude to someone who was rude to me in those situations. I just smiled and walked away. As I walked away I started to think of ways to circumvent the individual or office in order to achieve my goal. Admittedly, sometimes I just walked away and spent time alone in order to rebuild my strength and self-confidence. It is a difficult life to lead with a mental illness because society nearly expects me to get angry or ‘lose it’ so when I am actually justified in feeling angry at being treated badly, I have to remain calm and walk away.

Overcoming obstacles

The overall lesson to be learned from this information is that it takes a lot of will power and stamina for an adult with a mental illness to recover and reach their full potential, let alone a child or a young person. Staff in the mental health system will never be able to control what happens outside the care setting but they can prepare the young person to cope with negative attitudes, assumptions and obstacles that exist in our institutions and wider society. It is important to ensure that young people have the courage to seek help in times of difficulty. It is equally important to prepare them for the times when they will receive ‘no’ as an answer.

I have tried to identify some personality traits, which have helped my progress: strength, resilience, integrity, positivity, patience, tolerance. My history tells me that the mental health system failed me not people. I do not feel the need to spend my life blaming other people for aspects of my care that were out of my control and their control. I celebrate my life and respect the journey that has taken me this far. I had difficult experiences but I refuse to feel angry about them for the rest of my life. It would be a sad story if I lived through the difficult years, made so much effort to reach this point as an adult and then threw it all away by letting anger and bitterness consume me. I have a lot to be thankful for in my life. I have a fantastic support network in my family. I have a sensible, straight talking psychiatrist who, at the time, knew the limitations within the public adult service and worked around those limitations in order to provide me with a consistent level of care. It was not the best quality of care but it was consistent.

Every young person deserves to be surrounded by adults who have faith in their ability to recover even in the most trying circumstances. However, mental health care for young people is not about wrapping them up in cotton wool. It is about providing a safe environment when they become ill, which will help and support them on their journey to recovery. I can say that every adult in my life stood by me during the most difficult years, which made a huge difference to my recovery outcome, my progress to date and my good attitude to service providers.