Lee’s story: A mother, carer and outreach worker on life with bipolar

Lee Hutton is an Outreach Worker with Change Mental Health’s Hearing Voices service in Fife, and a carer to her son who lives with schizophrenia. For nearly 18 years, Lee was in and out of psychiatric hospitals, facing psychosis, suicidal thoughts and a diagnosis of bipolar type 1 with dissociative features.

Today, Lee has been well for over five years, a recovery she credits to the right treatment, daily meditation, the support of her family and colleagues, and the meaning she finds in her work. Now, Lee uses her lived experience to support others, showing that recovery is possible and reminding us that people living with mental illness are valued members of workplaces and communities.

early signs: voices in the curtains

Lee’s experiences began when she was just four years old. She remembers seeing a little goblin in her bedroom curtains.

“I used to see a little goblin in my curtains and hear his voice in my head. I was scared of this. My mum would check the curtains or move them for me, but it didn’t go away.

“As I grew up, the goblin would come and go and I learned to live with it. I thought everyone had this in their head, like an internal dialogue, and it was like a comfort at times.”

It is not uncommon for children to report hearing voices or seeing things others don’t. Around one in 10 children reports them at some stage. For most, these experiences are temporary and fade as they grow older. For a small number, they continue into adulthood and can signal long-term mental health challenges.

As a child, Lee devoured Enid Blyton stories. Later, she felt that many of the fairies, pixies and goblins she encountered in psychosis could have stepped straight from those pages, blurring the line between imagination and hallucination.

Through her teens and early adulthood, Lee’s experiences came and went but didn’t cause major difficulties. Until the birth of her fourth son which changed everything.

post-natal depression and the first crisis

“I became very unwell with post-natal depression, which led to my first hospital admission. I thought I had spiders under my skin, which only I could see, and I became extremely manic – not sleeping for days at a time.

“I thought there were goblins and fairies on the ceiling above my head. At one point, a nurse stuffed tissue in the holes for me, but was told to take it down as the psychiatrist said it was ‘compounding my psychosis’.”

At this stage, her sense of reality unravelled. Lee would dissociate completely, often believing she was a fairy or a child again. She dressed in party dresses, covered her face with glitter and filled her days with bursts of frantic creativity.

In her manic phases, she also lost control of spending. At first, her family didn’t think of blocking her access to money. She would buy gifts and make-up for other women on the ward, even trying to book plane tickets for herself and several patients on her ward.

eighteen years of hospitalisations

What began with that first admission soon became a long cycle.

“The pattern of mania and psychosis led to me having lengthy separate hospital admissions for nearly 18 years,” Lee explains. “I would try to escape hospital, sometimes successfully, and run to the beach where I thought my grandad was waiting for me in a rocking chair.”

The hallucinations were vivid and terrifying. “In order to see him again and join fairyland, I thought I would have to end my life. This led to me being kept in hospital for weeks and sometimes months at a time, as I became suicidal and sometimes hurt myself.”

Her moods swung between mania and crushing lows. “I’d be excitable or very tearful, jumping between these emotions erratically. The other side of the mania and voices would be the massive depression I would experience afterwards.”

After years in crisis, Lee was eventually diagnosed with bipolar type 1 with a dissociative condition and rapid mood cycles. Treatment brought stability, along with an unexpected sense of loss.

“When the antipsychotics started working, I had a period where I mourned for the loss of my voices and little goblin. The psychiatrist explained that because I’d had it most of my life, I was going to miss them. I slumped into a very deep depression because of this.”

Lee

family and becoming a carer

The illness took a toll on Lee’s memory and sense of self.

“I was extremely anxious, depressed and suicidal a lot of the time. I had serious suicide attempts. At times I would get a pass home, but it was often overwhelming, and I would have to go back to hospital, where I felt safe.

“Because I was dissociated, I can’t remember a lot of the times I spent in hospital. I would want toys or fairy things brought to me, and at times I would forget I had children and a husband – and think of them as fairies or pixies coming to see me, which was sad for everyone.”

Her family found this heartbreaking. “My sister said she just wanted her sister back. My husband often said he just wanted his wife back.”

Lee carries a lot of guilt for what her illness put them through. “Once I got better, I felt awful for what I had put them through. My four boys had experienced me being unwell most of their lives, which was very upsetting for them. But as a positive result, they are all very compassionate and understanding.”

Alongside her work, Lee is also a carer to one of her sons, who was diagnosed with schizophrenia at 19.

“He can be in and out of hospital for long periods. It takes a long time as a parent to accept that this is going to be a condition he lives with. You just have to try and put things in place which make his life better. But it’s not the life you envisage for your child.”

You can read more about Lee’s journey as a carer here.

finding treatment that worked

“I eventually ended up in the intensive psychiatric care unit as I had become so unwell I needed to be constantly watched, as I was a danger to myself. I was allocated a new psychiatrist who noticed I was on a drug at a high dose, which I should never have been on, as it can induce mania in people with bipolar,” Lee said.

Lee credits her new consultant, Dr Gandi, with helping her turn a corner. “I slowly got better and feel very fortunate to have him, whom I still see every six months. The best piece of advice he gave me was to meditate every day, which I do. This has definitely helped me stay well. It also helps to stay positive.”

from patient to peer: Lee’s work today

Today, Lee works as a Hearing Voices Outreach Worker for Change Mental Health in Fife, supporting people who hear voices or live with psychosis.

“My job as a lived experience worker also helps me stay well. I support people – some of whom I was an inpatient with – which is always funny, as they often say, ‘Lee, do you remember you thought you were a fairy?’

“It is such a privilege to support people who hear voices or have psychosis. I was at the Hearing Voices group last week when a woman who attended said, ‘If Lee can get better, so can I.’ I know having this lived experience works – for myself and the people I support.”

Her colleagues see that impact too. Susan Grant, Head of Tayside, Fife and Angus Services, who oversees Hearing Voices service, shared about Lee: “It’s a privilege to have Lee on the team. Lee has overcome many personal challenges. She brings a depth of lived experience that helps people feel understood and supported.”

Lee has now been well for over five years, with no hospital admissions.

“I can still have fluctuations in my moods and can become anxious if I feel stressed, but no mania or voices.”

She is also determined to challenge the stigma around psychosis and hearing voices. “There’s such a stigma around voices and psychosis that people are sometimes too scared to admit they have them. The media doesn’t help by portraying people who hear voices as ‘crazy’ or dangerous.

“It’s really important to me, as someone who has experienced voices and psychosis, to try and dispel these myths.”

support

Our National Advice and Support Service can help you and people you care for with mental health concerns and money worries.

We can link and signpost you to relevant local and national support, including our own Change Mental Health services, as well supporting with debt, grants and benefits.

The service is open Monday to Friday, 10am to 4pm (closed for lunch between 12.30pm to 1.30pm). Contact 0808 8010 515, email advice@changemh.org or fill in the form on the service webpage.

For full details about the service, visit the National Advice and Support Service webpage.