Project 99: Case Study – Jenny’s Story
This case study is one of a series which were developed as part of our Project 99 work. Through a variety of youth work contacts, we identified a number of young people who were able to provide some in-depth (anonymised) stories in a case study format. This gave us tremendous insights into experiences of mental health issues, use of digital technologies, and how these two might relate to each other. The other case studies and project outputs can be read on our Project 99 page.
Jenny is 24 year-old and lives with her parents. In the past, she was seriously ill but her involvement in youth volunteer projects played a big role in her recovery. She is now feeling healthy and works full time. She uses her lived experiences and recounts her personal story in a professional context.
Mental Wellbeing Journey
School offered mixed support – a few teachers were understanding, others less supportive. She received CBT and saw the school’s psychiatrist and a dietician. Jenny didn’t find the sessions very helpful – she knew a lot about food but the problem was having the desire to eat healthily.
Jenny stayed with CAMHS (Child and Adolescent Mental Health Service) until she was 20, and had mixed experiences.
“Well, do you know what, it kept me alive. So I can’t say it was totally unhelpful … it’s difficult to know what could have been done differently.”
Finding support
Jenny finds practical input most valuable – making a list of things to do helps her see recovery as a practical process. Her parents attend her meetings with the psychiatrist to help them understand and support her. Despite getting on well with the psychiatrist, she feels he “knew a lot about illness but just didn’t understand teenage girls.”
The disconnect between CAMHS and other services was the main issue – none of them knew what medication Jenny was receiving. Her parents acted a connection between services and would notify the GP when she was discharged from hospital.
Jenny found the transition from CAMHS to adult care difficult. Being surrounded by other people with eating disorders created a sense of a negative spiral. Long stays in hospitals far from home made it impossible to keep in touch with friends and she feels she should have been encouraged to have more social life. Being discharged was stressful, especially the week-long wait to see a psychiatrist: “well, ok, what do I do for that week?”
Jenny feels that the care was missing the “whole person support”:
“You’re treating illness but there is a whole person attached to that”.
Social Life
Jenny describes her illness as coming in phases. At University, she was unwell physically but enjoying University life kept her going; leaving was more difficult. However, her hospital visits progressively became shorter and finally unnecessary as she could self manage effectively.
“All the non-medical things” help keep her healthy; her job, volunteering, structured exercise, massage and new friends. They give her a sense of confidence, purpose and worth. Using her experiences to help others has been invaluable and helped her secure a full-time job in the mental health sector.
Digital Life
Jenny started to use social media actively after getting her own laptop, generating a lot of content. She accesses the Internet through her smartphone for leisure, and personal laptop for work. She becomes anxious if she ever forgets her phone.
On bad days, Jenny uses online journals, blogs and apps to obsessively track her weight and calories and deletes them when she feels stronger.
Jenny enjoys using digital media positively and recounts humorous details of her day on YouTube. She uses apps to help her sleep and relax. Keeping an open blog helps her keep a positive account of managing her mental health problems successfully. The longest she kept a blog was two years, and described eventually deleting it as cathartic.
Jenny also sought vital support from fellow sufferers on forums but felt it was easy to become trapped in a negative spiral:
“people were trying to get ill-er than each other”.
Mental Wellbeing Insights
Positive framing in school
“I got sent to the ‘Bad Boys Unit’ … for being disruptive … I didn’t mean to be disruptive in class, but I guess that someone in hysterical tears in the corner is disruptive.”
Positive framing of mental health is needed in schools. A positive and practical approach should replace being punished for being distressed.
Support for parents
“I can only imagine what it must have been like for my mum and dad, when they were the only people trying to keep an eye on me, trying to keep me safe”
Supporting a young person through mental illness can place a great emotional strain on the family.
Practical steps
Being able to take tangible steps and to tick off ‘achievements’ help young people to externalise their condition, rather than seeing it as a part of themselves and personality.
Generation gap
Young people sometimes feel misunderstood and patronised by medical professionals and other adult figures of authority. This does not necessarily mean that they won’t take on board the advice they receive, but it has a negative impact on their response.
Disconnect within NHS services
“The NHS services don’t talk to each other … that was a massive problem … it was worse for my parents … it was always them that ended up being the communicator between CAMHS and the GP.”
This is stressful for individuals and parents and leads to numerous communication problems.
Social isolation
“I lost touch with most people at school when I was in hospital for a long time. That was before Facebook.”
During long hospital stays, fellow patients become the centre of their social life, which denies a sense of normality. Facebook helped Jenny keep in touch, especially chatting with friends at night when she couldn’t sleep.
Relative nature of wellbeing
“I did get really unwell at Uni, but at the same time I was OK … like I might have got quite physically unwell, really low weight, but I was doing something that I enjoyed, so I was OK.”
Wellbeing is not simply dependent on how serious a person’s mental health condition is. The ability to self-manage, the presence of support, previous experiences, the state of their home, working and social lives are all key factors. Someone suffering from a relatively mild mental health problem may have a lower sense of wellbeing depending on these factors than someone with a more severe condition.
Whole person support
It is vital that young people receive help to lead active and healthy social and working lives, and to have focus away from their illness.
Importance of spatial design
“There were pictures up on the walls in the waiting room, pictures drawn by kids. The one that always sticks in my head was picture of a gun, picture of a knife, picture of mum and dad and it said ‘Home at Christmas’. And I’m like … take it down, take it down!”
The design of a space affects users’ emotional state; effort needs to be put into creating a positive and calming environment. Waiting and consulting rooms should not inspire anxiety.
Trusted figures
“I don’t like social workers … I just don’t! … If it’s an NHS thing or it’s got an NHS badge, that might turn me off as well, because I’m already involved with the NHS so much.”
Trusting people for advice and support varies. It is important to recognise that what might work for someone may not for others.
Sustained support
“Something that really helped after coming out of hospital a few years ago was having a nurse I could always contact, and they’d get back to you in 24 hours … I haven’t used it that much but just knowing that it is there is good.”
Having a named professional who can be contacted at any time is extremely valuable.
Urgency and acute distress
“Even a day is a long time when you are contemplating killing yourself. Even an hour is a long time.”
A fast response time is absolutely crucial when dealing with young people in acute distress.
Digital Insights
Digital media ‘withdrawal’
“I walked to the shop the other day without my phone. To start with I was like ‘Oh no, I forgot my phone!’. But then it was actually so nice to go for a walk without my phone, when I stopped worrying about it …”
Some people check phones so frequently that they experience withdrawal-like symptoms and mild anxiety when they can’t do so, even for brief periods of time.
Self-regulation
“There was a lot of upsetting stuff online recently by this feminist – I can’t remember her name – talking about rape and violence towards women. I actually had to mute the hashtag because I was like ‘I just don’t want to see this on my stream just now. I was talking to a few people who did the same.'”
Managing behaviour consciously and positively is arguably as important online and offline when it comes to mental health. Tools like trigger filters already exist on social media sites to aid self-management.
Blogging
“I used a blog every day for two years … but eventually I got rid of it because it was quite negative. Then I started another blog, but I mistakenly gave some people the password and realised I didn’t want them to read it, so I deleted that one too.”
Reading peer blogs can foster a feeling of support but blogging communities can also be negative, sometimes attracting abuse and misplaced advice.
Private internet access
“I used Livejournal when I first got ill to track my weight going down and stuff, but I didn’t have it for long … those were the days when you only had a shared family computer, so …”
As in Greig’s story, having a shared Internet access can cause difficulty. Negative online behaviours can go largely unchecked and lower young person’s threshold of self-regulation.
Negative online content
“The targeted ads on Facebook I find quite difficult … I get a lot of the ‘Lose Two Stone In A Week’ type adverts … sometimes I’m like, ‘Oh if they’re sending me this I must need to lose weight.”
Users can be easily exposed to content which is potentially damaging for their mental wellbeing.
Forums
“You can think you’re doing everything right, everything positive … BEAT is a good example, they’ve got their forums, you can’t mention numbers, you can’t mention food, all these things ruled out, but you can still see that people are competing, and that’s just part of the illness …”
The anonymity of forums helps young people express thoughts and questions they may be unable to raise elsewhere. Reading the comments of those in similar positions also allows them to feel less isolated and more understood. Some forum users can also provide invaluable positive advice. However, advice can sometimes be misplaced or potentially damaging.
Facebook vs Twitter
“Self harm and suicide ‘threats’ seem more common on Twitter than on Facebook … perhaps it’s not because there isn’t stuff on Facebook, just that you have to be friends with people to see it … where as on Twitter it is easier to access this kind of stuff, it just involves searching a certain hashtag.”
Young people’s Facebook networks contain close friends and, increasingly, older family members. As we have seen from the preference for anonymous forum and blog use, many vulnerable young people are unlikely – or unable – to share deeply personal and negative thoughts in such company. Twitter networks tend to be wider, often made up of complete strangers or more distant associates.
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