Ruby

Age at interview: 22

Age at diagnosis: 19

Brief Outline: Ruby has had several diagnosis including Borderline Personality Disorder with psychotic features. She experiences troubling hallucinations that relate to childhood trauma and has been in hospital regularly for three years. Ruby volunteers to help others.

Background: Ruby is a part-time student with the Open University. She is single and White British.

More about me...

Ruby had a difficult and traumatic childhood and began self-harming when she was nine years old. In her teenage years she developed an eating disorder and has attempted to take her own life in the past. Her father was abusive and very controlling and did not allow her to see any medical professionals to get help. When she did manage to get some counselling through her school, he found out and stopped her from going. By the time she was 19 things had reached breaking point. She went to ask her GP for help, and her father made her homeless. Her mental health deteriorated and she was admitted to hospital and assessed by a crisis team.  

Over her life she has received several diagnosis’ including Borderline Personality Disorder with psychotic features and Depression. 

When she was 19 Ruby began to hear the voice of a man speaking to her and then of a child crying. The voices seemed very real and the child’s screams worried her so much that she would often go looking for her. The man, who she now calls Darren, would make unkind comments to her and tell her to hurt herself. Ruby now thinks that the man and child represent her abusive father and her younger self. She sees her hallucinations, which are visual, auditory and tactile, are her brain’s way of trying to process what happened to her when she was younger. Understanding this has made things a little easier but when she has the hallucinations it still causes her a lot of distress and can put her in dangerous situations. For example, once she visualised the child, who she calls Alice, on a rail track. She put herself in danger trying to get Alice to safety. On another occasion when a friend had an epileptic seizure in church, Darren told her that if she didn’t hurt herself in a specific way, her friend would continue to have fits. There are times when she believes that Darren can control other people’s minds. 

Ruby has been in and out of hospital, both general wards and mental health wards, regularly over the last three years and has had periods when she would be in A&E three times a week. Now she has some good days. She still sees things that other people can’t see on a daily basis, but on a good day she isn’t as disturbed by them. There are still bad days, about once a month, when she is faced with distressing situations, flashbacks or situations that act as triggers, and she needs help. 

Ruby has attended her local Mind wellbeing centre for courses. The support she has had from the staff there has been very good in helping her set goals that are important to her. This can be anything from sorting out her flat (unpacking boxes from when she moved in), to reducing the number of visits to A&E in a given period. She has achieved things with their support that she didn’t think would be possible. Sorting out her flat had a huge impact on her mental health because it created a comfortable space where she could have friends over. 

Medications have helped her. In particular sertraline, an anti-depressant, and quetiapine, an antipsychotic, which help her to sleep better. 

Ruby has Joint Hypermobility Syndrome, which means she has increased adrenaline in the body. This in turn affects her mental health because the higher levels of adrenaline increase her anxiety symptoms. This also makes it difficult for her to exercise because her adrenaline levels go too high. 

Ruby’s mother wants to do everything she can to support Ruby but has a heart condition herself, which is exacerbated by stress and anxiety. Ruby doesn’t like to worry her, so won’t always tell her when things are bad. When Ruby was a child her mother nearly passed away a few times and she is afraid of losing her. Recently, however, when Ruby took an overdose in hospital, her mother was informed and it allowed Ruby to open up about everything that she was experiencing, and it has brought them closer together.  

Ruby is managing her psychosis better now and lives in independent housing. She is pro-active in helping others in need of support. For example, transferring out of Supported Housing meant lots of big changes. While her own housing association was quite good at providing information about what to expect, her friend, who also moved out of supported housing at the same time, had very little guidance or support. Ruby and a group of her friends have now produced a pack to help others moving out of supported accommodation, and everyone moving into independent housing in her local area now gets one of their packs. She has also been involved in volunteering with her local Personality Disorder Service and is a young champion with Time To Change. 

Ruby is positive about her future and is currently studying part-time with the Open University. She accepts that her emotions will always be changeable, but she is finding new ways to respond to them. Her hope for the future is to keep on learning to deal with what she experiences. She has accepted that those experiences may not go away, but also that her life is worth living regardless of what happens. 

Ruby’s father was abusive, and she started self-harming when she was nine years old. Things reached “breaking point” when she was 19.

Things started generally when I was quite a bit younger. I mean, I started self-harming when I was nine. So it's been going on quite a long time. And then, in my teenage years I developed an eating disorder. But part of the way that my dad was abusive was that he would control everything. So he wouldn't let me see any health professionals about it. And so, yeah, I went behind his back a few times. I got counselling at school. But he found out and so I wasn't allowed to do that anymore. And I used to say that I was going to one place and go to Mind. But he found out about that as well. So, I wasn't allowed to go. So things started when I was younger, but yeah, things kind of reached breaking point just before I turned 19. I was still living at home at the time and I went to my GP and said, look, I can't carry on how I am. So she referred me to mental health services and then when I went home that night, my dad made me homeless because I had gone behind his back to, to get that help, so we've not spoken since. 

Ruby had a diagnosis of BPD and explains that while psychosis is an element of that, it isn’t very often talked about.

So at what point did you kind of get, did someone give you an actual diagnosis around the psychosis separately at some point?

No, they, it is in the criteria for borderline personality disorder. It's just not really one of the parts that's talked about. I mean, I attended a year's worth of DBT with up to 20 other people during that time and none of them had the psychosis element of BPD, it's, it's really not talked about. Yeah, I mean it's in there but it's, they kind of said borderline personality disorder with psychotic features. They kind of, they mention it in that, because it's not that common. But, I think the way it's slightly different is that it, it tends to be from experiences rather than like some people's psychosis is a bit more random like it can be affected by other things that they've experienced. But they might see a pink elephant. I mean, it's quite unlikely that I will see the pink elephant. But like yeah, it could be, it could be anything. Whereas mine tends to be on like it doesn't feel it at the time, but in hindsight when I am not in that situation so intensely, it tends to be something trauma related. 

Ruby hears the voices of her younger self and her abusive father, which she now calls “Alice” and “Darren”. Sometimes Darren tells her to do things that involve self -harm or putting herself in danger.

Darren is- my dad was abusive and Darren does the things that my dad used to do to me when I was younger and so, in a way, because I have no contact with my dad now, it's my brains way of trying to process what was going on, which, when I'm feeling how I am now, I understand that. But at the time, it's too real and too involved for me to be able to get that perspective and that Alice is me as that child that was being hurt when I was younger, desperately trying to get somebody to help me with the screaming and the other things. Yeah, so once we worked that out, it was a little bit easier I mean, I still experience them and they still cause me quite a lot of distress at times, but it's a lot easier to have them in the background now without having to worry too much if they're not interacting, they are just kind of there. It's kind of easy to live with. Yeah. I mean, they've got me into lots of dangerous situations. I mean, Darren tends to- so, for example, once I was at church and my friend, [name] who has epilepsy she had a seizure and Darren said to me, if you don't hurt yourself in a particular way 400 times, then that's gonna keep happening until you do. So I went and did that. And of course then we both landed in hospital, so it's not really an affective way of dealing with it. But at the time, I believe that if I don't do what he says, he has that control there are times when I believe he can get inside, other people's minds and control them and make them do stuff. Other times like once I saw Alice, she was on the train tracks and so I wasn't on the train tracks, but I was stood by them trying to convince her to get off the train tracks, but she wasn't, there was nobody there as far as everyone else was concerned. And so that led to a section, because obviously I was putting myself in danger, but I thought that I was helping. So it can be quite, yeah, difficult, because at the time you have no real awareness of the real world. It's kind of just everything is so intense with that experience, it just takes over. 

When Ruby started hearing voices she was already seeing mental health services. Staff told her to “just get on with it” and her GP referred her for talking therapy. Things got worse and she ended up in hospital being assessed by a crisis team.

I was already in mental health services just about, just before I turned 19, I started being under them and yeah, it was, it was difficult because, because I, I had borderline personality disorder rather than like a typical psychotic disorder. They were kind of just like, oh it's just your BPD just get on with it. So there wasn't really any sort of support for it. Yeah, I was just kind of left to get on with it until quite distressing things started happening and then so we started to realise that Darren is- my dad was abusive.

So things started when I was younger, but yeah, things kind of reached breaking point just before I turned 19. I was still living at home at the time and I went to my GP and said, look, I can't carry on how I am. So she referred me to mental health services and then when I went home that night, my dad made me homeless because I had gone behind his back to get that help, so we've not spoken since. 

So by that stage, I guess you were seen by the adult kind of services. 

Yeah.

And how was that? You went through the GP and they referred you.

Yeah. So it took a while. I mean, I, my GP referred me to Talking Therapies, but I never got the letter. And then, a few weeks later when I was already, I was sofa surfing and I hadn't got the letter and things were getting worse. My GP then tried to refer me onto secondary mental health services but then I started ending up in general hospital. So the crisis team assessed me. And so I think, I actually got into services through the crisis team, but it, it, yeah, it was on the way there with the GP- but yes, it was the crisis team.

Mental health services told Ruby “we don’t want you back” because she was self-harming. Ruby has a good care coordinator now who has worked with her before when she was diagnosed with Borderline Personality Disorder.

Have you had any sort of consistency of like I suppose normally you'd have a care coordinator, but I guess—

Yeah, so I didn't then, because they kept saying like, ''We don't want you back in services, services isn't like the be all and end all. You don't wanna be in services all your life.'' Which is true, I don't want to be in services all of my life. But I also don't want this to carry on for all of my life and I don't know how to get further on from this. So then the crisis team came to me and they said, ''We will work with you ‘if’ you don't hurt yourself.'' Not like in a threatening way, but like in a, if you're just gonna go and hurt yourself, despite us trying to work with you, there's nothing we can do. So I said that I would do that and they worked with me. It took them three months to get me a care coordinator. So yeah, I worked with them for three months. —

That was after all these hospital admissions?

Yeah, yeah. And now I have a care coordinator and actually this care coordinator has known me for three years, because he's the personality disorder specialist. So he runs the DBT group. I've done volunteering with him. Yeah, he knows me quite well and knows my experiences quite well. And we are now working towards a placement at [a specialist personality disorder hospital] or [alternative pronunciation] depending on who you ask how they say it, which is a specialist unit [in one of the big cities]. 

Ruby has been “taken to a place of safety” under section 136 of Mental Health Act by police 45 times.

I've been in general hospital for my mental health I would say around 250 times in the last three years. And I've been in, I've been in psychiatric units eight times in the last two years if you don't include the sections. I've been sectioned under 136, by the police, 45 times. But I don't always get admitted.

What's a 136 or 146?

So it's, it's a Section 136 is the Mental Health Act and it's a police detention, so they can take you to a place of safety where you can stay for up to 72 hours and then you have to be released. And in that time, they'll do a Mental Health Act assessment to see if you need a further section. Yeah, it can only be done, at the moment, it can only be done in a public place.

So, although they do bend the rules a little bit with that. Not- so, for example, when I was in supported housing, my room wasn't public, but the corridor was. So as soon as I stepped into the corridor they could section me. So they kind of convinced, convinced me to step out and then, and then they sectioned me. Yeah, it, yeah, it tends to be well when I was in supported housing it would be that the support workers were worried that I wasn't safe being there then they would contact- train stations if you're vulnerable and you are at a train station and you're experiencing psychosis or you are suicidal then somebody tends to call the police. And multi storey car parks, I think those are the only places.

Ruby’s experience of being detained by police has been mostly positive particularly when they have spoken in a “gentle tone” and not been aggressive. She thinks it’s better if police avoid using physical restraint as that can be distressing.

Yeah. I mean, my experiences have mostly been positive. I've only had one negative experience. And the things that they generally have done has been very helpful. The things that have helped have been things like talking in a gentle tone, not an aggressive tone. Trying to get in front of my eye-line, because I tend to not, once somebody's in my eye-line, if they're speaking to me, it tends to get through a bit better. Yeah, like don't, it's a lot better for both the police and the person if you can talk them round to doing what you want them to do rather than restraining them 'cause that's very distressing. Yeah and that that sometimes it's more pleasant for the person, even though the rules are that an ambulance then has to come to transport you anywhere, which can take hours, because although you're sectioned, you are not a priority. Because physically, generally, you're fine. So quite a few times that I've been sectioned, the police have got permission from their superiors to just take me in their car, as long as I'm happy with that. And that definitely helps. It's much better to just go to the place of safety in a car when you're not surrounded by the things that have been tempting you. That you're less likely to try and run away, all of those sorts of things. And you're not stood out in the cold for hours, waiting for an ambulance to come just to take you somewhere when there's already transport there. 

Ruby has had bad experience of going to A&E after self-harming or attempting suicide.

I mean, the only negative experiences I've had tend to be more going into A&E and not being admitted. Yeah, I've had some, some strange advice. I've had things like you, ‘if you had a boyfriend you would feel a lot better’. ‘If you ate more ham then you would feel a lot better, because it's very tasty’. That was an interesting one. I had one doctor tell me that whisky would help. Yeah, I'd been refused stitches and staples. I've been, because if I'm gonna do it again, what's the point. I've been refused anaesthetic for procedures, because I clearly like pain. I've been told why do I bother coming to A&E, I clearly like having scars. So why not just have them as they are. 

It's a quite unkind—

Yeah, yeah. And I mean I've had positive experiences as well and there are several like all of the A&E staff know me now. But there are a few that will every time they will apologise for their colleagues who have been so not understanding. 

Ruby, who has had regular hospital stays because of her mental health, has had good experience with staff in general hospital wards. She has found regular staff are well trained and keep her safe, although agency staff need to be more aware.

So most of my experiences again have been good with admissions to hospital. I was generally admitted to the same ward, so the staff knew me quite well. And they are now more trained than they were, because, because I kept being re-admitted, they went, 'cause it was a, a young person's ward. So locally, the young person's ward goes up to 25. So they went to Adult Mental Health Services, and said can you tell us how to deal with the difficulties that I had. Generally, yeah, everyone was very positive and trying to keep me safe. 

Talking to me gently. Just generally chatting to me as well. But when I'm not in distress, because although being admitted, I was in distress. My BPD means that that can dissipate very quickly as well as it can come on very quickly. So I wasn't always distressed for the entirety of my stay. Yeah, just being, not judging anyone I think finding a way to let people outside for fresh air really helps. Because being, it's a locked ward, the young person's ward and being locked on a ward can be quite difficult. And yeah, if you're not allowed out at all then, yeah, it can be quite- just going outside even for five minutes fresh air can really help. But has also got me into a lot of trouble before [laughs], because there are risks that the nurses don't realise that there are, because it's a general hospital so they are not as trained. Things like the hospital shop sells Paracetamol to anyone over 16. And they also sell razors and pencil sharpeners and things like that. So, it, it can be a risk if you're out on your own. And agency staff, like the staff on the ward that are normally on the ward they know now, because it's they, they are aware it's happened. But agency staff don't tend to know. And so, when you're quite unwell, you can kind of talk your way into a situation that actually ends up hurting you more.

Ruby talks about tapping into a “recovery community” through a private account on Instagram, and using Facebook groups, which she finds a really positive experience.

There is a big Instagram community you only have to search things like hash tag recovery or anything like that and people will come up. And on there you can have a private account you only let who you want to see, see. I mean, there are things to avoid on places like that. But if you're focusing on the recovery community there's a big community that are very helpful. Also groups on Facebook. I mean, I'm part of Mental Health Fighters, that's the name if you search that it comes up and that's really positive. And there's a, a positive like Pen Pal so people with mental health is another group and people just write each other letters, send them positive encouragements with quotes or whatever you wanna send there aren't like a, a list of addresses or anything on there. You put up a post and say, hi, I would love to send something positive or receive something positive. If you're interested just send me a message and people do. Yeah, those are the main two groups that I use. 

Ruby goes to a wellbeing group run by her local Mind centre. She talks about the benefit of having support workers there to chat to who have a different “perspective” to health service providers.

I also go to Mind, which really really helps. I mean the-, I go to a wellbeing group and it's called, and it's funded by the National Lottery and it's a 12 week course where they cover just general wellbeing topics and at the start you set a goal and then they work with you on that goal towards the end of the 12 weeks they kind of review how that's done. And, it's a rolling programme, so anyone can start at any point. But I've now been going for a year [laughs] so the 12 weeks was a nice idea, but we’ve- me and my, I met a friend there, we didn't know each other before. But we're good friends now. And, we go together. —

What sorts of things. Can you just sort of mention the sorts of things that that's helped with?

Well, it's helped with being around people who although their experiences aren't the same, they understand. They're also, it's run by support workers and for the last hour there's sort of a general chat amongst everyone getting to know each other, talking about whatever you want. But there's also the staff are there if you want a one to one chat. There've been lots of times where things have been difficult during the week. It's somebody outside of services that doesn't have the same perspective, but understands mental health that you can just let things out and talk about whatever and they never sort of go, oh my gosh, that's so strange or like can't believe you're experiencing that. Yeah, they just understand. Also, so some of the goals I've set have been one of them was to be out of hospital as much as possible. I had, during that time we worked to put things in place and I think I only went to A&E four times whereas at some points it's been like every other day. So, yeah, working on that was a big improvement 

Ruby talks about the impact of her psychosis on friendships and how friends have helped her. Her mother is very supportive, although she didn’t open up to her about her psychosis for a long time.

There have definitely been people that don't really want anything to do with me, because of it. I think, not because they necessarily judge me as a person, but because either the situation's too distressing for them, if I'm having an episode or they don't know what to do and they feel so helpless that it's easier just to not be involved. Yeah, but then other relationships it's definitely brought me closer to people, because when you're in that vulnerable state, you kind of just, you don't really have a filter. You kind of just say whatever you need to say and so it, yeah, it has drawn almost closer, but also some of my friends are so desperate to find a way to help that they went and tried to find other people's experiences and talk to people about what helped you. How can I help my friends and like one of my friends, when I'm struggling, she saw this thing on Tumblr that said, when a friend is struggling with their mental health, ask them what their favourite colour is, but, at that moment, but not like a simple colour, but like say if it was turquoise you need to find a picture of the exact turquoise that you liked the most out of all the turquoises at that specific time and send it back. And it's a distraction in that moment of intensity. And that friend doesn't live near to me. I mean we worked together when I was younger and yet she still manages to find ways to help, even though distance wise she's not that close. And, I mean, other friends, like it was my friend that found out about the speaking, listening, friend thing that and yeah, that made a world of difference that. It wasn't from a professional, it was just a friend oddly enough.

I was gonna ask you where that came from, yeah.

Just a friend was desperate to find something to help and that was- he spent hours looking. Yeah. It helped.

Brilliant. And what about sort of family, is there any other family there that's been supportive? 

My mum is supportive. So I have no contact with any of my dad's side of the family. But my mum and her partner are very supportive. Although it took me quite a long time to open up to them. It wasn't until October this year that they knew I had hallucinations. Because I was so worried about what they would think. But also my mum has physical health problems herself and stress and anxiety, 'cause it's a heart condition she has. Can really trigger a, a negative spiral that can lead to her being in hospital and a few times when I was younger she did nearly pass away and so that's always been a big fear for me that if I told her something negative that had happened then she would go into a negative spiral and I would lose the only family I have. But when I, the last overdose that I took was so serious they rang my mum and told her that they thought I was gonna die. 

She didn't know that I was in hospital. So, yeah, a big, a big shock for her. But it, it brought us a lot closer. I opened up about everything that I was experiencing.

Ruby lived for a year without being able to unpack her belongings but was too embarrassed to tell anyone. Getting help with it had a huge impact on her mental health.

So that was moving from what kind of housing to what kind of housing?

So that was, I was already in it's housing association housing. But I was in a third floor flat moved to a ground floor flat. But when I moved, I wasn't well enough to unpack. So a year on, there was still boxes everywhere, because I wasn't in a position to unpack and I'd never let anybody in, nobody, absolutely nobody, because I couldn't, I didn't want to admit that I couldn't unpack. And so eventually I let somebody in and we set that goal and we worked towards it and we achieved what I didn't think would ever be possible and then the impact of that on my mental health was huge, really. 'Cause not only did I now have a liveable space, I could have people come over if I wanted them or needed them to come over. But also, it's a reminder that I can continually tell myself that if a little bit at a time, 'cause I can't do stuff for very long, because of my physical health. But a little bit at a time does achieve an end goal. And so with recovery say, a little bit at a time, hopefully will get to where you want to be. 

Ruby has received a lot of practical help from the Church. The people there were supportive, welcoming and understanding when she was unwell and even visited her in hospital.

My boss, at the time, he well he was my area coordinator. He is the pastor of a different church. And he found me somewhere to live with somebody who works with the homeless that went to the church that he runs and so I moved there and the people there were so welcoming, so understanding. I mean, it wasn't, I went from a church of about 400 to a church of about 20 [laughs]. So it was a big difference. But the, the people there were all, they all had something. They all had an understanding to some level whether it be learning disabilities. I mean, half, half of the people there couldn't read or write. People with physical disabilities, mental health problems. But everyone was, yeah, just so welcoming and they really really supported me. Visited me in hospital. Yeah, just continued to support me. And they still do. Yeah. They sort of became my family in a way, because I'd lost my family. 

Ruby describes how watching certain films and TV programmes can trigger her psychosis.

There have been other times different things so I went to the cinema to watch Miss Peregrine's House For Peculiar Children. And something you have to be very careful with when you have psychosis is what you watch and you, like what you let go into your brain, because you not consciously, but it sort of goes into the back of your mind and your mind tries to process it, but it can really effect your hallucinations. Then I was absolutely adamant that there were monsters that were gonna come through time and try and destroy the world and it was my job and I was the only one that could do it to stop them. So, I started, I would go where I thought that the monsters were gonna come through time, I would go and stand there for hours at a time. Sometimes late at night and just wait for these monsters to come so that I could stop them destroying the world. Yeah. Other things can creep in. I mean, the constant ones have been Darren and Alice, but at different times other things have creeped in. I've had like, I stopped taking my medication because I thought that somebody in the pharmacy had replaced the tablets with something else and they were trying to poison me. 

Yeah, that tends to be more on those sort of delusion side of psychosis rather than the hallucination side. But, I mean, that was triggered off again by a programme I was watching, Homeland. And her medication does get swapped. But she doesn't realise. And yeah, so generally before I watch something now, like this was when I, I didn't have, I didn't really know that it was gonna affect me in that way. I tend to sort of ask my friends, ''Has anyone watched it like what's it about. Like what sort of things does it mention. ''And there are certain things they steer away from. Things that kind of psychologically- like oh that could be a possibility, yeah, 'cause my brain tries to convince me then that it is it latches onto things and sort of twists them. 

Although Ruby doesn’t think her emotions will ever be “standard”, she thinks her response to them will change. She has accepted that although her psychosis may or may not go away, her life is worth living.

Is recovery a word that you use?

I do use the word recovery. I mean, there’s, yeah, there's different things that I think apply to, to different parts of my recovery. I don't think my emotions will ever be kind of standard. I think they'll always change more quickly and that they'll always be a bit more intense. But my reaction to those emotions, I think can recover. I mean, I'm a lot better than I was. I'm, at one point I couldn't stay out of hospital for more than 12 hours. I've not been in hospital since October. So, in, in that respect things are moving forward. But also, from my understanding about most people that go to [the specialist personality disorder hospital], which is where I'm being referred to is that after they leave, they have a bit of support from services. But in the long term they don't need services. They are able to manage most of the time on their own. Yes, they sometimes have crisis's and need a bit of support, but generally they can manage. And, yeah, I think that's what I hope for my future that I can continue to learn to deal with what I experience. I mean, I've kind of accepted that it may or may not go away, but that either way my life is worth living. 

Ruby wants young people to know they are not alone and that there are others waiting to connect. She thinks family and friends should accept what’s happened and not pretend it isn’t happening.

I think for the young people themselves, you are not alone and there are people out there that you can connect with. Locally, to me, there's no face-to-face groups that meet up, but I have made some of my closest friends and met them in person through online groups for people, young people struggling with psychosis with BPD with depression with mental health in general. Reach out to those people if you feel that that is what you need, if you need to know you're not alone in terms of other people experiencing the same thing. But also not to be scared to reach out to those closest to you. Some may react badly, but those people will never be, their negative reactions will never outweigh the people whose positive reactions could potentially help you survive the most difficult time of your life and move on to, to living a full life. In terms of friends and family, I would just say, listen. Don't say, ‘oh you can't be experiencing that or that's not real’. Validation is really important like, for example, saying, ‘I know that that must feel really difficult for you. And I'm gonna stay here. I am not experiencing it, but I know you are and that's okay. But we will get through this and you can carry on or you can do whatever it is in that situation that needs to be done’. And also there are groups out there for, for carers, for friends and family, connect with them as well.