First becoming unwell

People were not always able to identify clear or consistent signs of the onset of feeling unwell that eventually led to receiving a psychiatric diagnosis. Feeling unwell could be a gradual process, or passed off as ‘stress’. Even amongst people living with the same diagnosis, the actual experience of being / feeling unwell varied. However, most people who had experienced becoming unwell a number of times were able to recognise when things were not right for them. Others, in hindsight, remembered feelings, things they did or thoughts they were having that were out of the ordinary. Brendan, who tried to take his own life when he was a teenager, only realised many years later through therapy that he had ‘had a problem’.

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First becoming unwell
Living with severe mental health problems

The day after hosting a Christmas dinner Helen went to bed and just started crying and didn’t know why.

People also spoke about the things that led up to them feeling unwell (see Reasons for becoming unwell).

First becoming unwell

Some people noticed they were first becoming unwell when the pressures of life became too much. People said they reached a point where they were not able to ‘juggle all the demands’ of work and relationships and they withdrew. David, for instance, said that he ‘felt disconnected’ from ‘reality’. A few people became self-critical or mistrusting of themselves and others. Carlo described how he experienced ‘feelings of worthlessness’. Some people recalled how their thinking became muddled, negative or delusional. Alice said when she first became unwell it was like ‘dipping [her] toe into the darkness’.

Others remember sleeping a lot or crying a lot without really knowing why. Recalling the time prior to becoming unwell, Vanessa said, ‘I actually spent about a year crying and then I ran out of tears’. Ann slept a lot when she was about 14. She said her mother thought it was just puberty but she now thinks that was the first sign of depression. She tried to harm herself when she was 15. Physical symptoms sometimes accompanied severe distress and could be disturbing. When Ann was anxious she would tremble, shake, vomit, or feel dizzy.

When Carlo first experienced physical symptoms of stress (a racing heart, difficulty breathing, tight chest) he was taken for an ECG. When the medics told him his heart was ‘strong’, he was surprised.

Some people remembered hiding how they were feeling from family and friends. Tanai described how she was ‘very good at pretending everything was okay’. Others felt ‘isolated’ or ‘excluded’ and had moved away from family and friends just when they felt at their worst. For Jenny, ‘a classic example of someone who is mentally ill’ is ‘leaving their support network’. Some people didn’t know at the time what was happening or tried to ignore negative feelings. David ‘tried to soldier on and ignore the bad feelings’. Others, however, sought help from GPs or psychiatrists, but were told their experiences were not serious.

Michelle explained how she kept the voices in her head to herself because when it was happening it seemed like reality. She said she didn’t question it because we’re used to ‘trusting our minds’.

Ann said that her parents noticed something was wrong when she was as young as two. A psychiatrist dismissed it as an ‘overactive imagination’ and she learnt not to tell people that she was hearing voices.

Dealing with terrifying feelings alone could be very frightening for people. Many had thoughts of suicide or experienced non-fatal suicide attempts. Brendan described how he didn’t talk to anyone about his problems and tried to end his life. When he realised ‘this wasn’t really the answer’ he stopped, but never spoke to anyone about it.

A few people spoke about self-harm or the development of eating disorders. For Tanai, who was very religious, fear of sin became an obsession and she described herself as ‘very obsessed with… doing the right thing’. Her biggest fears were of being ‘gluttonous or being selfish or being lazy’. She started dieting and binge eating to deal with her loneliness and ‘mood swings’. Lisa, who was diagnosed with bulimia nervosa at age 13, wouldn’t eat in public and panicked about being invited to dinner and ‘not being able to find a bathroom’.

Living with severe mental health problems

People we talked to had received varying diagnoses and many described receiving more than one diagnosis in their lifetime. Diagnoses included severe depression, schizophrenia, bipolar disorder (also known as manic depression or manic depressive disorder), and schizoaffective disorder (see Experience of receiving a diagnosis). Many people described experiencing anxiety and depression. Some people also spoke about feelings of paranoia and the experience of hallucinations. Some were able to distinguish experiences and feelings relating to their mental health from other difficult times and events in their lives.

Sarah described her ‘first experience of psychosis’ as a ‘total world view collapse’. She said that it was different to past anxiety and distress she’d experienced in relation to other issues.

Many people related how the experience of delusions and feelings of paranoia were distressing and made everyday life and trusting others difficult. Paddy described how he would ‘step on wires and heaters and thought they were connected to demonic beings and stuff like that’. Sarah believed she was ‘like the next Jesus’ and had to sacrifice herself for the world.

Tanai experienced delusions and would become terrified of ordinary things like stepping on the ground or taking a shower.

Lisa moved to London and isolated herself. She had ‘bizarre’ thoughts about how doing everyday things would have catastrophic consequences.

When Carlo was in ‘full stage of psychosis’ he was ‘fearful’ and didn’t trust anyone and felt everything was targeted at him.

Experiences of severe depression also varied for different people. For some, depression meant extreme fatigue, others just didn’t feel like getting out of bed, or were crying a lot or feeling physically heavy. For Simon, it felt very lonely like being ‘off in another world of my own’. When the ‘severe depression’ Maria experienced was at its worst, she said she ‘couldn’t speak… couldn’t walk’ and ‘just wanted to lie down all day’. David had ‘periods of blackness’ when ‘everything light and positive and happy in [his] life was sucked out’. He remembered feeling as though he would ‘never feel happiness again’.

Quite a few people mentioned hearing voices. Sometimes these were voices of people they knew. Voices could be intrusive, demanding and contradictory. Chris described how ‘rational thoughts were very hard’ when he was hearing voices. While voices people heard could be distressing, they were sometimes positive. Michelle heard a variety of male voices that could switch between ‘more positive to more negative, derogatory and abusive’. She said they would become ‘more abusive over time’.

Niall described how he experienced highly distressing visual hallucinations, and heard a voice that told him to kill himself.

Jenny vividly remembers hearing the voice of her brother’s friend while they were having a conversation even after he had stopped talking.

While the experiences of severe distress, and hearing voices or having other hallucinations were disturbing for many, a few people described how they were a source of joy or comfort. Jenny described how she felt very isolated and said that her voices were a source ‘constant companionship’ and even ‘moral support’.

Nicky said that when she was in the manic phase of bipolar affective disorder she felt like she was ‘on top of the world’. She would spend a lot of money and feel like a celebrity.

Ann says her voices act as a ‘personal cheer squad’ when she is low.