David - Interview 15

Age at interview: 37

Age at diagnosis: 37

Brief Outline: David, 37, describes his ethnicity as mixed (White/North African). David was diagnosed with post traumatic stress disorder, borderline personality disorder and severe depression, 29 years after he first saw a psychiatrist. David's wife is also his carer.

Background: Married. Ethnic background/nationality: Mixed race (African/White) (born UK).

More about me...

David, 37, describes his ethnicity as mixed (White/African). David says he feels emotionally and culturally like a white person (because he was raised by his white grandparents) and caught in limbo like other people of mixed race.

David experiences breakdowns every 5-6 years. David says he thinks his personality is “quite distorted” as a result of the traumatic events he's experienced (being beaten-up, conflicts with his grandfather, his relationship with his mother). He describes feeling crushed, despondent, friendless, helpless, and vulnerable. He has felt suicidal and hurt himself. He is also bothered by disturbing images. Before taking medication, David would flare-up and destroy things around him and then break down in tears. At that time, he was so terrified of having mental illness and was worried about being hospitalised, given a lobotomy, or electro-convulsive therapy, he was in denial and felt suicidal. He discussed his feelings with his GP who reassured him he would only receive medication - David stopped being in denial and started seeking a diagnosis.

David was diagnosed in 2007 with complex post traumatic stress disorder (PTSD), borderline personality disorder and severe depression, 29 years since he first saw a psychiatrist. Getting these diagnoses was important for David because he says it told him that what happened in his past was not his fault, and it tells other people that he has a genuine mental illness. Prior to this, people thought he had an attitude problem and a bad temper; psychiatrists seemed to think he was dodging work. Until recently, David says services would patch him up with a superficial diagnosis and treatment and send him away. David feels things are coming together now that he and his wife have somewhere stable to live and he's receiving the treatment and medication he needs. David says he has a very sympathetic GP and a very good psychiatrist who is from an ethnic minority background. David says this helps because he would have had similar experiences of being racially harassed, beaten-up, not taken seriously, and patronised.

David found that cognitive behavioural therapy, talking therapies and meditation did not work for him, but his medication (Fluoextine, haloperidol and lamotrigine) has been a “lifesaver”. David used to smoke cannabis to escape but now he avoids it in case it interferes with his medication. Having nice, peaceful accommodation and avoiding things that upset him make his life easier. David also gets support from his wife who does the cooking, deals with the benefits, letters and other bureaucratic jobs. His wife has had a lot of help from carer support services.

David feels his problems stem from his schooldays' he retaliated to racist bullying and on one occasion was locked in a cupboard (aged 5) and on another he was referred to a child psychologist (aged 8). The child psychologist recommended David eat a better breakfast and change his Arabic sounding name to an English sounding one. David, who was raised by his grandparents, says his childhood was stressful because his family was unstable (his mother and father were separated), his mother had a string of relationships and his father was in danger because of the political situation in his home country. Despite difficulties at school, David did well in his A-levels and went on to complete a degree.

David thinks he will not recover but that his symptoms can be managed. He says mental illness does not have to be the end your life, even though it can be debilitating - he recommends that people try to get the treatment they need.

David says medication is the only thing that worked for him and it has been a lifesaver.

Well the negative stuff really prior to seeing my new psychiatrist the services were quite appalling really. I didn't get much help, I didn't seem to have my problems taken seriously. Nobody seemed to have a clear idea of what they were doing about my illnesses. And I seemed to go from one different specialist to another. Even recently I've just finished a course of CBT and even these talking therapies, they don't work. The only thing that seems to really work for me is my medication. Now my medication for my mental health because I've also got diabetes, I'm taking two tablets of fluoxetine a day. So I believe that's 40 milligrams. I'm taking one haloperidol a day and two lamotrigine. The lamotrigine was a new recommendation by my new psychiatrist for, for stabilising my moods in the day and it's helped a lot. It's taken a lot of the pain out of my day. So that's been a pretty beneficial and good thing. All the, all the other negative stuff I mean is, is just , you know, try this, try this therapy, try that therapy and, and none of them really seemed worked. There seem to be two schools of thought on this. One is that, I, by just working on my personality I can change it, and the other one is that, his personality is in place and the only thing that's really going to help him is to have medication and some pretty, shall we say, some heavy duty treatments. And I fall on the side of the heavy duty treatments because I've tried all the soft stuff. Like different therapies, meditation, exercise all of that and it just doesn't work. Whereas since I've been on my medication I really have felt like a different person and it's, it's been a real lifesaver for me. 

And have you got the, the dose right for your medication now or do you have side effects and that sort of thing?

At first when I was put on one fluoxetine a day I had. I had severe headaches and I felt nauseous for a day. But I decided to stick with it because I thought that's a small price to pay. And then, as the weeks went on I started to feel a lot calmer and lot more relaxed. As I've reported back to my psychiatrist and told him how I'm feeling and I'm behaving with, they've come up with this, this regime of tablets and medication that seems to work OK. It's been a very good approach because it's, it's been gradual. Give him a little bit of medication and see how that works. If he's stable that's fine, if not just keep on increasing the dosage and maybe reduce the dosage of something else. So it's been a bit of a trial and error but I don't think I've been a guinea pig or anything like that.

David says he experienced a lot of trauma while he was growing-up that made his personality ...

I mean the borderline personality disorder hasn't been given to me as a straight BPD [borderline personality disorder] but they said I'm showing most of the traits of it. So there's that I've got a personality disorder leaning towards BPD. So for the sake for convenience it's been called BPD. Post traumatic stress disorder definitely, I would say. I would say I've seen quite a few traumatic things in my life. This is interesting because a lot of people will then bring out the argument well, people have survived Auschwitz. People have survived Darfur, Kosovo, Cambodia, Vietnam, etcetera, etcetera, etcetera. But what my diagnosis is a series of low level traumas basically stretch over a period of years. And I can think of many traumatic events, being beaten up, seeing my mother having sex with people in, in a spare room. All kinds of stuff, the conflicts with my grandfather who's, the guilt, the shame, a lot of things I've had to carry. And lot of things have, have really made my personality quite distorted I think. 

Hmm. And that, the guilt and the shame that you refer to what, what was that in relation to?

I feel quite guilty that, you know, that I was born in a way because, you know, if I hadn't been born I keep thinking my mother would've had a different life. Although I've come to realise that's not quite true. All that happened was that she passed the responsibility on to my grandparents. I never saw her for a lot of the time when I was younger. She spent most of her time going to parties, going up to London coming back with a new boyfriend. It was quite horrendous really. And, well the shame, is, you know, back at that time if you're father wasn't around you, you get called a lot of very unpleasant names. And people say like, you know, you're father doesn't give a damn about you etcetera, etcetera. Now that sort of stuff doesn't really bother me at all. But then it was just another really blow at someone who's trying to grow to up.

David says don't give up, don't hurt yourself and don't commit suicide because things will get...

Don't give up. Don't hurt yourself. Don't commit suicide. Whatever you do, don't kill yourself, whatever you do, because whatever happens things will get better, it's just that you have to put up with the pain. And you've got to deal with this pain while you, while you're here now. What you've got to do is try and get as many people behind you as you can. What you've got to do is not put up with any nonsense from the Government, and Social Security, from the authorities because at the end of the day most of them don't give a damn about what they're dong. Most of them are just jobsworths. The people that are going to help you are things like carers' organisations, The Samaritans, SANE, Rethink, MIND and a whole raft of other charities and organisations, those are the ones that are going to help you. And at the end of the day, although you're not in a good position at the moment you should do whatever you can to help yourself. Don't worry about what other people tell you about, 'Oh, you're not going to work,' or 'Oh, stop feeling sorry for yourself.' They're, most of them are, are just selfish idiots who have disappeared up their own backsides to be honest. Just look after yourself and if you've married and you've got a wife, look after them. Look after your family. And make sure they get the help that you need. And I would say, as a final word, don't feel ashamed, there is no shame.

For David, recovery means getting treatment and being treated seriously.

Well I think a recovery, which in my case is probably never actually going to happen anyway, is where you, you, you're diagnosed with a diagnosis that, you know, is a little bit more significant than what I had, and then given the appropriate treatment. And the closest I got to that was when I was 24 when they gave me Amitriptyline to try and deal with my symptoms. And that was a precursor to getting the proper treatment then. My, my penultimate breakdown, as it were. But for me a proper treatment, a proper recovery is where your illness is taken into account and treated seriously. I just feel that it was a, a case of patching me up and then sending me back out into the world again only to get chewed up and five years down the line back on the conveyor belt.

Hmm. OK. And you said there that you don't think recovery something's that's ever going to happen to you.

No. I think my quality of life can improve but apparently, because it's my personality, I've been told, this is the line according to my psychiatrist, and not just one, this is several, is that personality disorder, essentially, you can't, you can't cure it, you can only treat the symptoms and keep the patient comfortable. As far as I know. Personality disorders are to, to try and get me to change my personality I think would be like trying to change my DNA and change the way I look. For example, turn me into a white person. It's just not going to happen. Having said, the symptoms can be managed, which seems to be the case now with me.

Hmm. And so how do you feel about that?

Well, I take the philosophical view, or I try to, I mean, I've got a, a mental illness, I've got a personality disorder but then, you know, my mother's friend's daughter had leukaemia and she was at death's door and it was only because her sister was a bone marrow donor and it was a match that she actually survived. And, you know, there's loads of other people get a much rawer deal.

David says various factors contributed to his mental health problems, including an unstable...

Would you mind telling what, what you think did cause your mental health problems?

An unstable family, I think. I think it was a number a factors. My mother not being a very motherly type of character, being basically a kid who had a kid, at seventeen years old. I think that's way too young to be having children. My father not being there. My grandfather, my grandfather being in denial about me, I, I mean if I get called Black this and so and so, he, he'd just say, you're white all the time and he'd keep on saying that. And after awhile I believed, I started believing that. I actually, I almost came to the point where my vision changed. 

And, and emotionally and culturally I still feel that I'm a white person but I know that I'm not. So in a way I'm caught in a limbo between these two worlds because I can't speak Arabic and I don't live in an Arabic country. But I don't look like an English person. So like most people of mixed race I think this is a separate ethnic group all in its, all in its own right. Like most people of mixed race I'm trapped in limbo. And for questions of identity which are very important for people, you just, you just feel trapped and you feel lost. And that's, that's not a very nice place to be at, at anytime in your life.

So is there I mean you, you don't have a, a feeling that you identify more with the, your father's side or with now?

I don't feel I have any identification or indeed any ability to relate to anybody at all in significant way.

David's mental health problems began when he was five years old and he was experiencing racism...

My experience of mental illness well, I think that really started when I was about five years old. I got my first experience of mental health professionals when I was eight. But my first cogent memory of anything is being locked inside my school, when I was five years old, in a classroom. Now as you can see I'm of mixed race or you may think I'm Mediterranean, Greek, Italian or Turkish or what ever. But in fact my father is Libyan and my mother is white English. Basically back in those days it was 1970's and things were pretty grim then for anyone that wasn't white. I remember somebody called me maybe a Paki or something like that.  And being in the area I was in, which is basically a pretty rough part of [city], I knew all the bad words that you shouldn't know at that age. Well I told, basically told someone to go forth and multiply and as it were and  I ended up being locked in the classroom during lunch break. Now that seems to have a very, that was a very seminal moment for me because that kind of defines my relationship with other people from there on in. And I know that sounds a bit weird but you've got to remember that at five years old it's still at very important age when you're developing. And being locked in a classroom I didn't know how long I was going to be locked in for and I was left all on my own unattended and I was very frightened. And I was left quite dumbstruck by the experience. 

After that, that was my first day also at junior school, so that wasn't a very good experience for me. And as I said that seems to have defined my experiences with other people from then on in.  What happened after that was I went then, I continued in school, and my first experience of mental health services was actually after I injured someone quite severely,  again it was racial abuse. And I just grabbed this guy that had basically been bullying me and I threw him against a wall. His head split open quite badly and he ended up having to have quite a few stitches.  I was really shocked at what I'd done. I'd slammed him into a wall and I just remember blood all over the place. I couldn't believe what I'd done. It was quite traumatic for me.  The school authorities thought I should see a child psychologist. I saw a child psychologist  the recommendation was that I had better breakfast. And a that time my name was Farid  it's an Arabic name, so I changed it by deed poll in the past to try and fit in a bit more as it were. I was recommended to have my name changed to Fred and to have, have a better breakfast in the morning because I didn't really eat much in those days because I couldn't really. I was so stressed out really. Why was I stressed out? Now that's a good question. At eight years old you'd think people were living in a stable family. Well unfortunately I wasn't, my father and my mother split up quite shortly after I was born.

David explains why it took so long to get a diagnosis and believes that this changed when he got...

And so what I mean how do you make sense of the fact that took long to get a diagnosis I mean you, you said a little bit about one thing that was, could, could you say a bit more about that do you think?

I think it was lack of understanding and I, I still think there's a major, major lack of understanding in mental health services about what is a mental illness. I think a lot of people will think that you're being weak. And I've, I've come across the attitude quite a few psychiatrists who seem to have the impression that I'm malingering somehow or, or dodging work, which isn't the case. If I really wanted to dodge work I wouldn't have gone out and got a degree, in fact two degrees I might add, I've actually got two degrees, so I wouldn't have got those qualifications if I'd had any intention of malingering. One doctor in particular didn't think that I had BPD at all because her, her PhD, and she was resting on the fact that her PhD was in BPD. And she said, 'You're not showing any of the traits of it at all.' Which in my opinion is, is quite ridiculous in fact, not just strange, because it's quite obvious that I'm showing the traits of BPD, intense on and off relationships. I haven't experimented with, with alcohol. I've got to admit I have smoked a lot of cannabis in the past. And just, just I am showing traits of BPD probably a bit of narcissistic personality disorder in there and maybe avoidant personality disorder. But I'm showing a lot of disordered traits and that. And the psychiatrist in question seems to think that reading about Gandhi and The Dali Lama would be a panacea for my problems.

I don't know how she came at that conclusion at all. But I didn't think I was in any position to question so I didn't actually go along with what she'd said because I thought it was quite frankly ridiculous. So after that, that was about five years ago, I've kind of been bouncing around in the ether between one different psychiatrist and another. And I remember my first point of contact with the psychiatric services, the first question I was asked, 'Don't you want financial independence?' Which doesn't seem to be a very appropriate question for someone that's, you know, not really able to think about what time they're going to get up, let alone financial independence. So I've encountered quite a few interesting situations let's say. 

Hmm. So what do you think changed then to, for you to be able to get these diagnoses all of sudden that, that now you agree with?

I think having, I think having a sympathetic psychiatrist helped. And I also think having one, my psychiatrist is from an ethnic minority, and I think that helps quite a lot. Because prior to that I hadn't actually had a psychiatrist from an ethnic minority and that's made a big difference, because I think their own personal experiences, they'll know because they're of the same kind of age, they're kind of my coevals as it were. They'll, they'll know about the experiences that I would've been through. They would've had a taste of it themselves. And they'll know what it really feels like to, to basically have every door slammed in your face.

He describes his various symptoms, including feeling vulnerable, "horrible images" in his head,...

Well the more recent stuff is just feeling utterly, utterly crushed and feeling completely despondent, friendless, helpless, and completely vulnerable in a very hostile environment. I mean it feels that if I open the door poisonous gases are going to rush in and kill me. It feels, when I hit days that are not good it feels like there's been a nuclear war and everywhere is poisonous and radioactive.

And I get all kinds of horrible images coming up in my head usually, usually images of death or something or somebody's I knows died, something really, really unpleasant. That, that's one of the symptoms going, this is post medication. Pre medication I could flare up very easily and just start smashing stuff. Screaming, crying, go missing, I'd be in very bad way completely. So after the, post medication, post 2002, I'm very much, my pain is very much internalised. And it's insular, but it doesn't take control of me. I just think to myself, well look this is nasty stuff going in your head. You're just going to have let it run thorough you system and it will stop, whereas before I didn't have that kind of cognizance of it. I just, I just get the wrong stimuli especially if somebody told me something I didn't want to hear and I just go bananas. I'd really, really flip out and just terrify everyone around me. So those are my symptoms. And prior to that even I'd, I'd, I, when I was a kid, when I really, really young I'd just be screaming all the time. And just oh it was just terrible.

David had problems finding somewhere suitable to live and struggled to get the social security...

Between 2001 and 2007 we had to struggle all the time to get what we were entitled to in terms of benefit. Adequate housing only came two years ago. Before that we were living in some pretty unpleasant places, with, you know, Victorian conversion properties, converted houses all turned into flats and they're all pretty nasty places to live in.

Noise was the biggest problem and that's something I'm very sensitive about.  I don't mind reasonable noise like people closing doors or even hearing someone using the toilet which I can even do sometimes in my own block as I've got pretty good hearing. What I don't like is music thumping away or people yakking away at the top of their voice on the phone. As my psychiatrist noted I am very sensitive to noise. 

Getting around now pretty much to the present, well things seem pretty settled now.  I, as I said at the start, you know, we've got somewhere decent to live,it's a pretty good piece of accommodation. It's solid brickwork throughout. My benefits are in place now so we don't have to keep chasing around x number of government agencies trying to get what we, we are entitled to sorted out'

I mean, I think mental illness is pretty bogus but, not just simply because it's a mental illness, it's pretty nasty, but it's people's reaction to it as well. They won't take it seriously and there's still this stigma, this idea that you're malingering, that you're, you're making it up. Just to, just to go on benefit, which actually is not a fortune, it's only just enough for me and my wife to keep our heads above water. And, yes, I get slightly more than unemployed people because I'm disabled but it's still not a fortune. And anyone who says otherwise is deluding themselves, I'm afraid. It's just enough for me to survive on. Which is fine, because I'm not working and that's not really a problem for me. I don't go out and spend all of my money on 52' plasma TV's or fancy cars, I just make sure I've got a reasonable diet. And of course, incidentally, while I've got diabetes I have to be very careful so most of our money goes on is fresh, good quality food which keeps my blood sugar down. Apart from that we live very simply.

He says his wife helps with practical things and that trying to manage without her would be a ...

On a day-to-day basis she does cooking I used to cook a lot, I don't so much now, especially since I got diabetes. My food used to be very heavy on oils and fats and meat and, and salts and sugars and all kinds of bad stuff. So my wife looks after the diet side of things. I do things like run the rubbish out, tidy up, things like that from time to time. [Emotional support and understanding, keep an eye on me and my medication, go out with me for reassurance.]*

Although my wife laughing in the background does most of the hard work, I have to admit. On a, on a dealing with other people basis, she takes the phone calls and the mail. Dealing with the bureaucracy, that's her job as well. And I've got to say my wife's a very resilient character and if somebody messes us around like down at the Council, she's very much of the pit bull variety, she'll, she'll lock her teeth in there and she'll just start sending one letter after another. And I can't, won't and can't anyway, name the list of people she's got into trouble down there, through their sheer incompetence. And she's highlighted their stupidity, which is great. If you can, if you have got a family member, maybe not a wife but brother, sister, mother or father, that can help you, it's a big help although I do realise there's a lot of people who aren't in the same privileged position I am, that are actually single and having to deal with these problems on their own which can be a real nightmare.

*Additional text inserted by the participant