We’ve rounded up some of the research we’ve covered over the years that’s explored what it’s like to live with mental health problems, from obsessive compulsive disorder to hearing voices. Psychologists call these kind of studies “qualitative research”, where the aim is not to put a score against particular symptoms, but to discover the first-hand perspective and experience of the people who take part, based on their own words. Such studies are often distressing to read, but their insights make a vital contribution to our understanding of the human condition.
A recurring theme from interviews with seven people diagnosed with depression was their sense of depletion and emptiness, both bodily and in thinking about the past and future. “It’s like something’s gone inside me and swept my happiness away,” said one participant. “I feel like sometimes my life is on hold,” said another. Isolation was another key theme, as captured by this man’s description: “You get into a state I think mentally where, you’re just like out on an island … You can see from that island another shore and all these people are there, but there’s no way that you can get across [ ] or there is no way that you want to get across.” Writing in 2014, the researchers Jonathan Smith and John Rhodes said it was clear that all the interviewees had in common that they felt alone, empty and that they had no future.
Selective mutism does not feel like a choice
People with selective mutism can’t speak in certain situations even though there is nothing physically wrong with their vocal chords and they don’t have brain damage. Four people diagnosed with the condition were interviewed via Skype’s instant messenger interface. Their descriptions challenged the traditional idea that selective mutism is a choice. “It isn’t me,” said one participant. “I know who I am and I’m not shy or quiet, maybe that makes it harder. When I’m with my parents I can be myself but around everyone else it’s like it [selective mutism] takes over. I can get the words in my head but something won’t let me say them and the harder I try the more of a failure I feel like when I can’t.” The interviewees also revealed how the condition became self-fulfilling as people came to expect them to stay silent. And they talked about the extreme loneliness they experienced. “It’s like that scene from Scrooge where he looks through the window and he can see people having fun being together,” said one interviewee. “I’ll always be stuck outside looking in.”
To be a refugee with psychosis is to feel there is no future
The first-hand experience of refugees with symptoms of psychosis was documented for the first time in a heart-wrenching study published this year. Based on interviews with seven African refugees or asylum seekers, the researchers identified six main themes: bleak agitated immobility; trauma-related voices and visions (mostly the sounds or sights of lost relatives or attackers from the past); fear and mistrust; a sense of a broken self; the pain of losing everything; and the attraction of death. The last theme was captured by the words of 26-year-old Sando: “The worst part,” he said, “is I keep harming myself, … and you know knocking my head to the wall, kinda too much stuff in there, you know, I just want to open my head and finish with this.”
Some people have a love-hate relationship with their OCD
Based on their hour-long interviews with nine people diagnosed with obsessive-compulsive disorder, the researchers Helen Murphy and Ramesh Perera-Delcourt identified three main themes: “wanting to be normal and fit in”; “failing at life”; and “loving and hating OCD.” The first two themes were often related to the painful situations provoked by the interviewees’ compulsions. One man who house-shared described how he had to scrub the entire bathroom with powerful cleaning product for an hour every day before he could use it. But at the same time, the interviewees explained how they actually feared losing the crutch that the condition provides. “I wish I could do that [stop checking], I wish I could stop,” one man said, adding: “Well, not totally.”
Being labelled as “schizophrenic” feels hugely stigmatising but also unlocks much-needed treatment
In a 2014 study, seven patients diagnosed with schizophrenia described their dilemma: they needed the diagnosis to access treatment, but had also feared and avoided the label because of the stigma associated with it. The interviewees said they tried to hide their diagnosis from people, and they noted how mental health professionals used alternative words like “psychosis” as if aware of the stigma of schizophrenia. “People are always afraid of saying that word to me,” said said one woman, “… because it is a dirty word.” The interviewees also described the chasm between their clinician’s view of the illness as biological (a “chemical imbalance”) and the perspectives of other people in their lives. “My mother … all she said was ‘I told you, it’s because you’re psychic …,” said another interviewee. The researchers said more needs to be done to overcome delays in treatment caused by ill people’s fearful avoidance of a diagnosis.
For many people who self-harm, seeing their own blood makes them feel calm
Among 64 people who self-harm, recruited from a mass screening of 1,100 new psychology students, just over half said that the sight of their own blood was important to them. The most common explanation the students gave was that seeing their blood made them feel calm. Other explanations were that it “makes me feel real” and shows that “I did it right/deep enough”. Those students who highlighted the importance of seeing their blood tended to cut themselves more often than those who didn’t (a median of 30 times compared with 4 times) and they were more likely to say they self-harmed as a way of regulating their own emotions. Another study from 2013 asked self-harming teenagers to carry a digital device for two weeks, in which to record their motives for self-harming as they occurred. Just over half the sample reported self-harming to achieve a particular sensation, the most common being “satisfaction”, followed by “stimulation” and “pain”.
Anorexia starts out feeling like a solution but then takes over
“Anorexia became a friend,” said Natalie, one of 14 people recovering from anorexia who were interviewed as part of a study published in 2011. “When I was alone … I knew that at least I had A.” Eventually though, for Natalie and the others, anorexia became overpowering, almost like a separate entity which they had to fight against for control of their own mind. As Jon, another interviewee, put it: “It’s like there are two people in my head: the part that knows what needs to be done and the part of me that is trying to lead me astray. Ana [his nickname for anorexia] is the part that is leading me astray and dominates me.”
For some people, mirrors are addictive and imprisoning
A diagnosis of Body Dysmorphic Disorder is made when someone has a disabling and distressing preoccupation with what they see as their perceived physical flaw or flaws. In upsetting interviews that were published this year, 11 people diagnosed with the condition described their complicated, troubling relationship with mirrors. One woman said she’d once stared into a mirror for 11 hours straight, searching for a perspective where she felt good enough about herself to be able to go out. Another interviewee, Jane, described mirrors as “f*cking bastards” and mirror gazing as a “form of self-harm”. The interviewees also described what they perceived as the ugliness of the person staring back at them. “I look like a monster,” said Hannah. Jenny said she is “truly hideous” and “repulsive”. Lucy said: “Everyone else, everyone is beautiful. I just feel that I am that one ugly person.”
People’s experiences of hearing voices vary hugely
Last year, researchers analysed seven previous studies that had explored people’s first-hand experiences of hearing voices. Taken together, the most striking finding was that to hear voices that aren’t there is not a homogenous condition. While most people described attributing an identity to the voices, they differed in whether they saw the voices as separate from their own thoughts or not, and in whether they felt in control of the voices. Those who subscribed to a biomedical account, believing that their voices were caused by a chemical imbalance in the brain, tended to feel less in control of their voices. Similarly, heard voices could interfere with social relationships, for example by making critical comments about friends or family. But voices could also play a beneficial role by reducing loneliness. “I have not got many friends … so the only thing I can stay very close to are the voices and I do stay very close to them,” said one interviewee.
Positive change is a gradual process that is realised suddenly
As well as asking people about their experiences of mental illness, psychologists also research what the process of recovery feels like. In 2007, researchers interviewed 18 women and 9 men diagnosed with conditions like depression and anxiety about their experiences of positive change during Cognitive Behavioural Therapy. “It was gradual but the realisation was sudden,” one interviewee said. Many of the participants could remember the exact moment: “I could actually hear it,” one said. Other themes in the clients’ descriptions of how change happened were: motivation and readiness (“I was desperate to get back to my old self”); tools and strategies (“It’s the changes in behaviour that I learned”); learning (“I would take a lot of stuff home to read about assertiveness”); interaction with the therapist (“…they don’t judge your character or think they know you”); changes to self-perception (“I am a strong person mentally”); and the relief of talking (“Let me get everything out, let me relieve myself of everything”).
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