People we spoke to talked about what it was like to experience severe mental health problems such as hearing unpleasant voices that were not there, or feeling extremely anxious. There were also physical experiences, such as extreme tiredness, bodily pains and lack of appetite. For some it was only in remembering their experiences that people recognised that they were so mentally unwell at the time. However, for many, their mental distress was familiar. Having experienced it throughout their lives they, or a loved one, could ‘read the signs’.
Some people, like Sunil, had clear periods of their lives when they were unwell but also had many years without experiencing any symptoms. Other people, like David Z, spent most of their lives dealing with mental distress of one form or another. You can read more about people’s experiences in ‘First becoming unwell‘ and ‘Diagnosis of a mental health condition‘.
Steve describes how his wifes depression looked from the outside. There were peaks and troughs, but when it got bad she usually had ECT and felt a lot better within a week of being home.
Some people talked about how difficult it was to put into words their experience of depression or other mental health problems. While some remembered their ordeals clearly, others found it difficult to recall the details of their episodes, Kathleen said she was glad she kept a diary, because there were times when she felt like she was ‘in a dream’ and she didn’t know what was real. Reading her journal reassured her that things were really happening.
While the types of distress varied, people who were depressed often experienced anxiety as well. No two people’s experiences were exactly the same, however, there were some things most people experienced:
Not being yourself, acting ‘out of character’, being more quiet, ‘everything [seeming] unreal’, being detached, feeling isolated, being fearful, hyper sensitive to others’ behaviour, loss of self-esteem
physical symptoms: physical illness, immune system being low, sweats, weight loss, dizziness, exhaustion, feeling lethargic, not looking after yourself, poor hygiene, hypersensitivity, lack of/disrupted sleep, loss of appetite, loss of sex drive
emotional aspects: no interest in things, shutting down, being uncommunicative, fear, anxiety, panic attacks
psychotic symptoms: auditory and visual hallucinations (‘the people were really, really, really there’), ‘voices’, feeling paranoid, hearing religious themed voices, not moving or being ‘catatonic’, ‘despondent’, being high (mania).
Most people were so distressed at certain times that they talked about being suicidal and or wanting to harm themselves (see ‘Suicide and self-harm‘).
Although people talked about very distressing experiences, equally they found ways of understanding these experiences in time, and this helped them cope. Many people talked about working out how to better manage their mental illness (see ‘Managing mental illness and recovery‘). Yvonne had the usual worries, like how would she be able to pay for her mortgage, but she came to understand her mental health issues as the ‘added wee bits on top’. She said as long as she could find a way to cope she was fine and ‘quite happy’. But most people found it difficult to cope and they needed help from others to learn how to do so.
Helen describes her schizophrenia as like having a different personality every other day. At the beginning it was just dark horrors but now she works through it.
Being high meant Tania had vast amounts of energy, but at other times she was also mentally suicidal. She fought the voices in her head, but believed she was going to kill herself and eventually had ECT.
Depression and Anxiety
Depression is different from sadness. The people we spoke to described depression as feeling cut off from the rest of the world, feeling worthless, not wanting to carry on living, wanting to self-harm and feeling the pleasure that they normally experienced ‘slip away’. Jane wrote a poem in her teens called ‘Shrink back’ describing her ‘inability to have physical contact with people.’ Enid described not being able to stop crying for long periods of time, and many people talked about life having no meaning.
For some, depression came in episodes, but for others it seemed to be how life was.
David spent most of his life feeling depressed. When he wasn’t depressed he said things felt artificial.
When Kathleen became depressed she wasn’t sleeping and started drinking and self-harming, and took an overdose. She had marital problems and felt isolated from friends but she eventually got support.
For some people, like Tracy, they could feel ok one moment and then become highly distressed the next. She described having fun visiting the beach with friends whilst on leave from hospital but then later that day crying for hours. Sunil and Tania spoke about sliding from being well to being in a severe depressive state very quickly. Some people spoke about being able to ‘hold it together’ on the surface and that it was not until they got deeply unwell that people realised that there was a problem.
Enid kept diaries when she was depressed and found it surreal looking back at them. She says when you are well it’s difficult to understand why you wanted to self-harm.
As well as depression, some people experienced ‘highs’ where they had huge amounts of energy. John Z spent a lot of money during these periods, and Tania found she could be very academically productive as well as training for marathons and triathlons. However, people often experienced severe lows as well, where they withdrew from everything and could become very depressed.
People we spoke to had often felt anxious. Severe anxiety can make it difficult to deal with everyday life. People talked about being overwhelmed by feelings of intense fear to the point of terror, feeling that they were going ‘mad,’ or that something awful was about to happen. Annie and Lorraine described their mother constantly worrying that she had something in her throat or that she wasn’t able to breathe. Their mother found it hard to go out when she was unwell.
Julian felt that waves of terror and anxiety made suicide seem an entirely rational choice.
For years Sheila thought her husband was just anxious’ but later he developed severe obsessive compulsive disorder. He has intrusive thoughts about killing himself to stop himself from killing others.
Psychosis describes the situation where you see or explain events and things in ways which others would consider highly unusual. It includes seeing or hearing things others don’t, holding beliefs that others don’t share, or making links between things that only you are making. People who experienced psychosis frequently did not know what was happening to them at the time. Some felt very distressed while others thought nothing was wrong with them (see ‘First becoming unwell‘). Julian remembers thinking the CIA were following him and thinking the television was giving him messages. In between psychotic periods, he was completely rational and could remember being psychotic.
Sue, who was diagnosed with quasi psychosis, created a figure in her mind who she called the hanging man to deal with the effects of childhood sexual abuse.
A few people talked about what they described as ‘spiritual’ or religious elements to their psychosis. Suzanne had a panic attack because she thought the end of the world was coming and thinks she had a ‘spiritual God connection type-thing’. Catherine Z remembers pulling her hair back and looking in the mirror and ‘seeing the devil’. She also thought she knew ‘the secret of the universe’. But Jane, who was brought up a Christian, felt the anxiety she experienced during her depression about going to hell had a protective quality because it actually stopped her from killing herself.