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Hannah

Age at interview: 19
Age at diagnosis: 15
Brief Outline: Hannah has experienced low mood and depression since she was 14 and started seeing “visions”. She has had diagnosis of psychosis, depression and Asperger’s syndrome.
Background: Hannah works part-time and is single. She is English.

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Hannah was receiving support from CAMHS for depression and low mood when she first started seeing images that other people couldn’t see. The first time it happened she was out walking with her dogs and the vision, which was a character from a film, faded. She didn’t tell her family or friends about it at the time. She first spoke about it to someone at CAMHS and they suggested she was experiencing psychosis. After that the images became more frequent and she saw “little gremlin looking things” which would stand in the distance and stare at her or follow her. When she looked at them directly they would disappear. 

She has tried a few different medications. At first she was given aripiprazole (anti-psychotic), which had no effect. She was then given olanzapine (anti-psychotic), which did make the visions less frequent, but also made her put on a lot of weight. When she came off that medication the visions came back ‘with a vengeance’, almost as if they had been repressed. She started to feel that they could control her. She was given quetiapine (anti-psychotic) in hospital and that seemed to work well and she continued to take it for over 3 years. That had the effect of raising her cholesterol, but her cholesterol is reducing now that she has stopped taking it. She currently takes venlafaxine (anti-depressant).

She went into hospital voluntarily when she was 15 and was there for three and a half weeks. She didn’t feel that hospital was a good experience. The nurses didn’t engage with the young people and the greatest comfort for her was speaking to the other young people there. They were not allowed to go into each other’s rooms and she found it hard not being able to comfort a friend who was clearly distressed. 

While she was in hospital they diagnosed her with Asperger’s and she found it a “relief” to get that diagnosis. She thinks it explains a lot about how she communicates with others and she thinks she has probably had it since childhood, but was never tested. 

While in hospital she went to art therapy and mindfulness classes but didn’t find those useful. She also had counselling for a year and a half, mostly for her depression. The counsellor was trying to find some past experience that was at the root of the problem, which she didn’t find helpful. She never felt there was anything in her past that caused her psychosis and she thinks that should be taken into account in talking therapies. What she does find useful is ‘strategies’ for reducing her visions. She has found many ways to help herself. She tries to avoid seeing disturbing images on TV, in the cinema or when she is out, that might later come back as visions. She also enjoys listening to music and being with her dogs and finds that helps her to relax. These work best for her and she is not currently taking any medication or experiencing visions.
 

Hannah thinks it’s a misconception that everyone who experiences psychosis hears voices. She describes the first time she saw a “visions”.

Hannah thinks it’s a misconception that everyone who experiences psychosis hears voices. She describes the first time she saw a “visions”.

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I think it can be a bit of a misconception that someone with psychosis hears voices. That I never have heard, heard voices. I just see things that aren't there. So I think that's useful to know if you are someone who is experiencing it and you don't have voices, don’t hear voices. That you can still be experiencing a psychosis. 

And tell me a little bit about your experiences? Is it something that's always been there?

No. I think it started when I was about 14. So that's five years. It wasn't a problem before that. I basically just started seeing like images that were- that other people couldn't see. And it did affect me quite badly. 

What were you doing at the time? What do you remember about that time, so was there a sort of first time it happened or a first time that you realised that other people couldn't see those same images?

Yeah, when I think the first time it happened, I was walking my dogs. And I saw something and I knew that it wasn't real, because it I looked at this figure and it was there and then it wasn't there and I hadn't experienced that before. So it was like something from a film. Like how- like when people were dreaming or remembering something then it flashes and it's gone, sort of like that. 

Okay. And how was it, but obviously it sounds like it was different to a memory although you talk about it as like a memory, because it looked like a visual thing.

Yeah. That's how I, I relate it so people can understand. So like in films if it's in a—it comes up as somebody’s memory. That's what it looks like and it just fits goes in there sort of thing.
 

The first time Hannah had a visual hallucination, she was already seeing CAMHS to help with her low mood and depression. Her parents encouraged her to speak to CAMHS about her experiences.

The first time Hannah had a visual hallucination, she was already seeing CAMHS to help with her low mood and depression. Her parents encouraged her to speak to CAMHS about her experiences.

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And at the time did you talk to anyone else about it?

No. I didn't. I didn't want to- I don't know, I guess if you talk about it then it's real and I didn't want to think it was real and that it was happening. 

And what kind of sense did you make of it at the time?

I didn't understand what was happening. I hadn't heard of it before. I didn't think, think I was very well educated on it. I, I had no idea what psychosis was before I had it. 

Did you mention it to friends or family?

No the first time I mentioned it was when I was in CAMHS and I was talking to them about it like how I was feeling and they asked what was going on and I told them. 

And how did that happen? How did you get to that point of going to CAMHS?

I was feeling low and my family were noticing it. And they spoke to my GP and they referred me to CAMHS. 

Okay. And so that was all kind of happening at the same sort of time or was that later than that initial time when you saw that image?

It was whilst I was being supported by CAMHS that that happened. So I was with CAMHS for a, a little under a year, I think before that happened.

Oh right. Okay. Was that for anything in particular you were already with CAMHS?

Just my low mood I was with them for that and struggling with making friends and that sort of thing. 

Okay. Yeah. Right, so they were already seeing you. Did anything change then once you'd talked to them about the images that you were seeing?

I think it got worse.

Can you tell me a bit more about that?

They just became more frequent. I could see them every day. And it would vary in what I was seeing, so it could be like little gremlin looking things like Harry Potter sort of things you'd see. And they'd follow me or stand in the distance and stare or sit and watch me and I'd see them. And then I'd look at them and then they'd disappear.
 

Hannah felt it was “a bit of a relief” to get a formal diagnosis.

Hannah felt it was “a bit of a relief” to get a formal diagnosis.

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Did someone sit down with you and explain it and say, here's a diagnosis for what you're experiencing?

I think when I was in hospital that sort of came then. That was a clear point where they said, it's a psychosis and you need to be on anti-psychotic medication in order to manage it sort of thing. Whereas they'd sort of skipped around it a little bit in CAMHS. 

What was that like being told that when you were in hospital?

It was good, I think. 'Cause I find when I got that diagnosis that it don't know how you'd word it. It was a bit of a relief, I think, because it gave me a reason as to why it was happening. Because beforehand I just thought I was just going a bit mad and it wasn't really happening or it was my fault like it didn't have a reason to be happening, medically. 

Did you know what psychosis meant?

No. I did a lot of research on it. 
 

Hannah, who has Asperger’s, has always struggled to communicate with others and understand them and she thinks that the pressure and anxiety caused by this is “closely attached” to why she experienced psychosis.

Hannah, who has Asperger’s, has always struggled to communicate with others and understand them and she thinks that the pressure and anxiety caused by this is “closely attached” to why she experienced psychosis.

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Yeah when I was in hospital, the psychiatrist said that he thought I should be tested for Asperger's, which is the first time I'd ever heard of the term, anyone referring to me as that, possibly having it. And I did get tested and I do have Asperger's. And I think that is very closely attached to why I have experienced psychosis. So 'cause of the, the anxiety that's connected to communication and with other people and I've always found it difficult to communicate and understand people as easily as other people do. So the pressure and the anxiousness that comes with that, I think has led to the depression and psychosis. 

So it was, sounds like that was quite helpful. 

Yeah, really helpful to understand that that's what it was that had led to it, so I could understand how to improve myself. 

And do you think that changed the way that they dealt with the psychosis from a medical perspective as well?

Yeah

That you were aware of. I mean, did they say, you know, because of this, we'll send you on this route instead of that route. 

No, not really. They didn't change much. They just spoke to me about how this is why it's been happening. It was like, oh, makes sense now. I don't think a lot of people have maybe heard of the connection between autism and psychosis. But there is a definite link that should be looked into. 

Yeah and had no-one ever investigated that before for you?

No. I'd been through CAMHS. And the whole education system and no-one had come up with that, I found it shocking. 

And does it make sense in terms of you know, your whole life or do you think it was something that only started later on in your teenager anyway Asperger's.

It makes sense in my whole life. Because they had to do an in-depth interview with my parents and they said that it was apparent from like birth. I would be very different in how I'd play with people and talk to people and that sort of thing. It was clear, but no-one saw it. 

And your parents have never come across it or no-one had ever said that to them?

No, I think it's a problem with girls with high functioning autism to be noticed, because I was always the good girl in class and the person that the teachers would be like, I wish we could have thirty of you instead of everyone else, because I just listen and get stuff done. So they wouldn't have thought anything different. I think, in boys that it's more apparent that they'll have challenging behaviour issues and that will make them stick out so that they will be noticed, but for people like me it wasn't the case.
 

Hannah was transferred from CAMHS, who she had been seeing for low mood, to EIP. There was a gap of about 4 months when she had no support because EIP were understaffed.

Hannah was transferred from CAMHS, who she had been seeing for low mood, to EIP. There was a gap of about 4 months when she had no support because EIP were understaffed.

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I was also supported by EIP Early Intervention Psychosis for three years. They were very helpful. 

What kind of things did they do?

So I had a care coordinator come and see me once a week and she would talk to me and listen and give me advice, that sort of thing. 

So when did they sort of come on board then? Was that a handover or I suppose they were there as soon as you got the diagnosis were they from the hospital?

Yeah. When I left hospital I was with the EIP. There was a bit of a crossover before that, before I went into hospital between CAMHS and EIP. But I found that I wasn't with either of them for like probably [rustling on mic] about four months before I went into hospital, because they're understaffed and they my care coordinator wasn't, was on annual leave or something. And they didn't have anyone to replace it. So I think that probably had an affect on me. 

That gap. So it was the care coordinator was the EIP care coordinator who should have been taking you on?

Yeah, who was seeing me and then stopped, because of some reason that I was never made aware of. 

No-one else was there to step in?

No. They didn’t have many people.
 

Hannah saw a therapist for a year for anxiety and low mood. She said they focused on her childhood whereas she didn’t think there was anything problematic in her past.

Hannah saw a therapist for a year for anxiety and low mood. She said they focused on her childhood whereas she didn’t think there was anything problematic in her past.

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With CAMHS, yeah, I did have counselling. But I didn't find it helpful. I found that their method was to find a cause like pinpoint some sort of relationship that you have that might be going wrong that they'll make me think that there was a problem when there wasn't one. So that caused some issues. Yeah, I find that sort of therapy isn't very useful the one which targets issues in the past. I think it's quite a common thing that people think if you have mental health issues that you must have had some sort of tragic experience in your life. But that just wasn't the case for me. So I think it might be helpful for other people to know that. But you don't need to experience something really bad for that to happen or like you don't need to be in a really bad situation in your life for it to happen, it just happens. 

And did you feel you were able to communicate that back to the counsellors, sort of thing?

Yeah, hopefully. 

How long did they see you for?

About a year and a half or something. 

It's quite a long time then. 

Yeah. I tried to give them a good shot. 

So you learned that actually there wasn't anything!

No.

How did that sort of finish? Did they say, you know, it's fine, you're obviously not getting anything out of this.

Yeah, I just, I told them that I wasn't finding it useful. It wasn't helping me. I also had CBT therapy and which I didn't find very helpful either. I don't really like the whole drawing of things and like hot cross bun method and all this sort of stuff.

What's that? I don't know that one?

I think it's where they connect your thoughts and your feelings and altogether and what and the experiences that you have and how you react to them and how you should react to them differently. 
 

Hannah had a positive experience of support from her school but still struggled to study because of her psychosis.

Hannah had a positive experience of support from her school but still struggled to study because of her psychosis.

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It was difficult. I only had like a very small circle of friends. And they were the ones who knew about it, knew what was going on. It was difficult to keep up with everything because everyone was doing all of their work and I was missing so much. But it's okay.

And in terms of sort of missing school, who was it that informed the school then?

My mum spoke to them about it. And to my head of year and they allowed me to drop some subjects so that I could keep up with the other ones, which was very helpful. 

And was there any sort of counselling services at the school as well or any nurse involved?

No.

Right, okay. Did they just not have a nurse or?

I think they had a counsellor there. But I never used them.

Is that because you didn't want to or just wasn't offered.

I don't think it was offered, but I wouldn't have wanted to, I don't think, because I wouldn't want to take more time out to see them.
 
But while you were at school, you were getting support outside it sounds like, anyway. 

Yeah, yeah.

From them. Was that kind of enough?

I think so. 
 
And tell me a little bit more about the school head of year and how important their input was

 I was really grateful for their help. How they would make sure I was okay and they gave me an exit card, so that if I was in my class and I was overwhelmed with thoughts or visions, I could walk out and then I would go sit in their office and just calm down and—
 
Did you ever use it?

I did. That was really useful. 

Brilliant. It sounds like an amazing idea other schools might usefully used as well. 

They should.

And was that something that they just offered to you or did they ask you about it?

They told me about it and I said, yes, please.

Okay. And they had to obviously let the teachers know what it would be and everything. Brilliant. And how did the experiences affect your study? What was it about the experiences that most affected your study?

That I wasn't able to attend the school. I didn't leave the house very much. So I wasn't getting the proper teaching and that sort of thing.
 

Although her EIP worker advised her not to tell her employer about her experiences, Hannah wrote her diagnosis and medication on her medical questionnaire. Her managers were very supportive.

Although her EIP worker advised her not to tell her employer about her experiences, Hannah wrote her diagnosis and medication on her medical questionnaire. Her managers were very supportive.

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I have only had a job for part time weekend job for a year and a half. I think I have experienced psychosis at work. But they're aware of it. So I feel like it's a comfortable space so I can have time off if I need it. I can tell them that I, I need to leave. 

That's amazing. How did you kind of go—people listening to all of it looking at the website might be worried about, do I tell work or how do I tell them.

Oh yeah. That's really interesting, because when I was speaking to my care coordinator with EIP they actually told me not to tell them. I was like, what do you mean? I have to tell them. What if something happens and then they let, they say I can't keep my job, 'cause they don't know what's happening. But they said, the stigma is still there. So you wouldn't want them to think that you're incapable so I can understand why people would be reluctant to tell people. But I think it was a good choice to tell them. So, I think, I got given a medical form, medical questionnaire and you have to put down if you have any conditions or anything or medication. So I just put, popped it down on there and so I didn't really talk to them too much about it. 

And that just went on your file. And did anybody at work raise it or ask you, you know, about it?

Yeah, I got pulled aside by my manager to talk about it and they were just really great. Said, if there's anything they can do let them know. They are there to support me and they wanna make sure I'm okay.

And how much info did you put on that sheet. So did you put a lot or did you just say, psychosis. 

Yeah, I just put psychosis and depression and medication that I'm on. 

Okay. Well done you. Do sort of colleagues and friends at work, do they know about it or was it just the management that you told?

Just the management, yeah.
 

Nothing “really bad” happen to Hannah before she first saw a vision but she now thinks “anxiety” is a trigger. She also tries to avoid seeing “scary images” which can become “visions” later.

Nothing “really bad” happen to Hannah before she first saw a vision but she now thinks “anxiety” is a trigger. She also tries to avoid seeing “scary images” which can become “visions” later.

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I think it's quite a common thing that people think if you have mental health issues that you must have had some sort of tragic experience in your life. But that just wasn't the case for me. You don't need to experience something really bad or be in a really bad situation in your life for it to happen, it just happens.

Yeah. I'm always aware of my triggers. So that affects me in how I don't go and do certain things. So I've never been to Thorpe Park. Because of their basis on some of their rides with like horror imagery. So I've missed out on quite a few trips, because of that. I didn't go paint balling at one of my friend's parties, because I was afraid of the masks that they'd be wearing of that being a trigger. 
 
That's all managing it. It's you've got to a place where you've got all these strategies like you said. 

Yeah. 
 
And, but it sounds like it does, I mean, has that been a big impact for you sort of I suppose saying, I can't come to your party or so it's sort of, it's strategies which are working to help you, but it does sort of slightly cut back on your flexibility, not flexibility, but the options, I suppose. 

I think I've been lucky in how the friends that I've had to say no to with those situations. They're aware of what's going on so they understand. They are not hurt by it. They don't mind. 

Yeah. Yeah. That's good. And what about sort of romantic relationships we have to ask about everything. Would you say that your experiences have affected that?

Yes. I think so. If they're big fans of horror films, I’d have to say, I can't watch it. And then you'd have to explain why and then you’d have to try and get them to understand which can be difficult. But they've been understanding. 
 
Do you think that psychosis affects men and women differently?

I don't know what you mean by that. 

Just in terms of the sort of social impact or relationships or—

Maybe.

Not something you've kind of come across. 

I haven't, no. 

And can you tell me a little bit about your family now?

My family. 

What's been good or not so good in terms of support and how important that's been in the process for you. 

They've been really good. My parents have always been really strong supporters with me. And my brother is brilliant. He makes sure that if we go and see a film that has spots of imagery in it, he will tell me to close my eyes or if we are out in public and it's around Halloween and there's posters or something scary, he'll tell me to close my eyes and then tell me when I can open them, which is very nice. 

Just sort of out of interest, do you find that, 'cause it sounds like for quite a while you've been managing any exposure to images. Do you think that's helping to make the images fade or anything? 

Yeah, I think so, because they get, I think my mind gets the images that I see from those images. So you deprive it of that, that source then it struggles to come up with new ideas. I think I'm, another trigger I sand being anxious, so in like when I have expectations like exams and stuff or anything like that then the anxiety that comes with that would trigger psychosis as well, so at least that's something that I had to manage. 

And is it the same tools that you use for that, same strategies or—

Yeah, trying to keep myself busy, so watching something and listening to music. Sitting with my dogs. I find that quite therapeutic. Just like talking to them and petting them. 
 

Hannah thinks people shouldn’t be afraid of their diagnosis.

Hannah thinks people shouldn’t be afraid of their diagnosis.

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If you had to give one bit of advice, what would it be?
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To not be afraid of the diagnosis. It doesn't make you a bad person. I think it can be portrayed in the media and TV shows like the word psychotic is used to describe a murderer, but that's not who you are. So, don't be afraid of yourself because of that description that's flying around. It's an illness and it's not your fault.
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