From severe mental illness and blindness to a CEO with vision: Carolyn's story

21/03/2022

After experiencing psychosis, and then becoming temporarily blind due to a physical condition, Carolyn hit rock bottom. But with help from an Early Intervention team and her own resilience, she became a campaigner, gained a degree and is now on track to be a CEO.

It sounds like something you would read in a book. Indeed, a publishing house released my journey to psychosis in 2009. Despite changing names to protect others' identities, it was a candid, no secrets, no holds barred account and my first insight into how sharing your story can empower people.

I was a type 1 diabetic from the age of nine and by 12 years old I had found myself with an eating disorder that was later classified as ‘self-harm.’ There comes a point when your body goes into self-protect mode, menstruation stops and living becomes existing. Later, a psychiatrist told me, that this had contributed to my ‘organic psychosis.’ It crept up slowly, insidiously, and in my mid-20s, it erupted. This seismic psychotic bout remained undiagnosed for eight months. My suffering would have been far shorter if it were not for stigma.

  • I did not know at the time, but the longer you remain in crisis the longer your recovery time is.

I was diagnosed in 2007. I did not know at the time, but the longer you remain in crisis the longer your recovery time is. I remember my first major breakthrough was realising that I was able to follow a whole TV programme. Like most, I started with small steps.

The early intervention team helped me with health in a more holistic manner. Yes, there was medication and counselling, but they also helped with daily living activities, housing, and general support. I still remember the care plan they co-produced with me today. It still helps me to recognise the potential effects of stress factors before I am consciously aware. The worst times took years to recover from, but I no longer take medication for psychosis. Even keynote speakers who are famous for life coaching on TedTalks and YouTube will openly say that life, even for them, can become overwhelming, but it's the resilience and coping strategies that they have learned along the way that helps them bounce back quicker.

Psychosis was like being held prisoner, where every second is a living hell, your spirit is tortured over and over again and there’s not a minute’s rest. Sleep is rare and as soon as your eyes are open it starts all over again. With medication and an early intervention team (hardly early) I had become well enough to think about a new direction.

Then came blindness.

The eating disorder and diabetes mismanagement during psychosis took its toll. My loss of sight was due to a condition created by my diabetes leading to hemorrhages in both eyes. At the time surgeons were unsure whether they could restore my vision. I hit rock bottom and felt paralysed mentally. The only good thing about losing everything and being at the bottom is that you can only move up. After many eye surgeries, there was a long healing process. I started to build resilience and find tools to unlock my potential. I used my improving sight to do photography and create visual art.

It was art that stopped making me focus on perfectionist ideals of what others should view on the finished canvas or image. I did not get paralysed before I made my first brush mark because I was focused on the action of doing, the creative process. It was this that helped me deal with the struggle of uncertainties; whether I would relapse or if I would lose my sight again. By shifting my mindset, I had a new attitude which expanded my skill sets tenfold. I started studying for my psychology degree and took part in anti-stigma campaigns. Local campaigning grew to national campaigning.

A highlight was inspiring change on a larger scale, representing Rethink Mental Illness (with a cohort) to lobby MPs inside the Houses of Parliament. I felt privileged to be a part of the fight to reduce inequalities and placing public mental health policies on the agenda. The difference that Rethink Mental Illness makes in this domain is perhaps immeasurable in ​terms of the positive impact it has on millions of individuals' lives including mine. 

Anti-stigma campaigning helped me find my voice and I have not stopped using it since. I graduated with a First Class degree (BSc Psychology Hons) and recently founded a not-for-profit called We are Creatives Thurrock. Our face-to-face reach has exceeded 20,000 people in its first six months.

Soon to be a Community Interest Company, I am looking forward to taking the position of CEO. I am proud to be part of a team that increases engagement in the arts, enhances well-being, and boosts community connectedness in an area with one of the lowest engagements in the arts nationally

Our biggest goal for the next couple of years is the creation of The Grays Urban Art Trail. We are collaborating with national organisations and notable artists to make a difference in communities, lives and mental health for generations to come.

 

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