Mae - Interview 04

Age at interview: 62

Age at diagnosis: 45

Brief Outline: This 62 year old woman has manic depression and describes herself as mixed race. She enjoys life now and is glad to be alive. She thinks going to groups is important and says black families sometimes push away relatives with mental health problems.

Background: Retired cook, divorced with 2 surviving adult children. Ethnic background/nationality: Mixed race (Black/white) (UK born).

More about me...

Mae, 62, describes herself as mixed race. She was diagnosed with manic depression in the early 1990s after a lifetime of mental health problems. She has also been diagnosed with cancer. As a child, Mae experienced abuse at the hands of her (white) stepfather and stepbrother. At an approved school Mae was abused by the other girls because of the colour of her skin and in hospital she was told, “You black people are nothing but trouble” and was beaten up and put in a padded cell. When one of Mae's neighbours discovered that Mae had a mental health problem she became very abusive. Mae's family also turned against her. Mae thinks that black families sometimes push family members with a mental health problem away.

Mae could be “high as a kite” one minute and very low the next. Her reckless and erratic behaviour meant people thought she was “mad” and feared her, especially because she is black. When low, Mae would not be able to open the curtains, eat, or be amongst people - sometimes for long periods. When high she would start drinking and could be violent. Mae says her depression got worse over the years and she harmed herself and tried to take her own life many times. 

Mae's life changed when she left her physically abusive husband of 33 years, got her own flat and gave up drinking. She started going to Rethink and meeting people there enabled Mae to reveal her true self and feel less alone. Mae also gets support through a black and ethnic group at Rethink and knows that her support worker is just on the end of a phone. 

Mae originally got a CPN (community psychiatric nurse) only because her husband's social worker recognised that she had mental health needs, but felt that this white CPN could not identify with her ethnic background. Mae currently feels vulnerable having been refused access to a social worker by her mental health team and GP. Mae has not found psychiatrists helpful and would never stay in hospital because she didn't trust anyone. She resisted taking medication in hospital because she didn't want to be a “zombie”. Mae takes her medication willingly now, because she knows it's “the only thing that helps”.

Mae takes an antidepressant (Citalopram) which helps her feel “even”. She has tried Valium (diazepam), Prozac (fluoxetine) and lithium, and sleeping tablets. She also takes pain killers for her arthritis, cod liver oil tablets and an herbal sleeping tablet. She swims and keeps fit, and does needle work to help her relax. Mae's spirituality is important to her, she reads the Bible and she has started studying witchcraft. Mae also eats healthy, organic foods. 

Mae says that she's come through the other side and is glad to be alive. Mae thinks it's important for people to join BME groups and let their voices be heard. Her message for others is, “don't ever give up”.

Mae says nothing should get in the way of recovery and that you should approach it one step at a time. (Played by an actor.)

And I was told by somebody, I think it was somebody here, that you have to be selfish in a way, not selfish to be mean but selfish where you say nothing must get in the way of my recovery. Everything I should do should be for me and in a nice way, not a selfish way but to make sure that, you know, you're living your life how you want to live it and it's, you know, you're not being controlled by anybody else in your life'

But yeah it's very complex all of it. If you, if you try to sort it all out [at] once you never will. So it's just like a strand at a time, you know, like I said earlier small steps turn into big strides and then, because it's amazing the way my life has opened up, it's, it's amazed me and I'm not easily amazed, I've got to be truthful I'm not [laughs], I'm usually the one who always sits there going, 'Oh yeah what, yeah right,' [putting on sarcastic voice] you know'

And I think once you cater for all the small needs then the bigger issues kind of start sorting themselves out anyway, I think so, yeah. I think with anything you do in life if you, you kind of, you know, if you, like for instance if you're at home and you're cleaning up you just make your food and you clean up after yourself instead of slinging everything around, then you've got to go back and clean up a big mess isn't it? So that's the kind of thing that we should be doing with our lives anyway is, you know, kind of sorting ourselves out just a little bit at a time.

That's a really good way to think about it I think.

Well I think so yeah definitely because then otherwise it becomes, because I know from the past if you leave everything like money issues and you haven't taken your tablets and you just think well sod the lot then, you know, I'm not doing well today and sod it, I'm going to go in my bed and lay down and I'm not going to, and so then you start getting ill again and you can't afford to let yourself get into that situation in the first place. So when you do start recognising your symptoms hopefully there will be somebody there, on the other end of a phone or perhaps a group you can go, even if it's just another mental health, mentally challenged person like yourself and sometimes they're better than the professionals I'm telling you, and give you better advice [laughs] that's true.
 

Mae says she hasn't had much help, but didn't really want any because she didn't trust professionals. She says she can talk to her GP. (Played by an actor.)

I hadn't had a lot of help' you know. this service is okay in the fact that, you know, there is some help but I don't get any other help from anywhere else, I don't, well I don't want a psychiatrist anyway and I don't want a CPN either because I just feel that sometimes they, they do things behind your back, they'll write things down about you and you don't know about it and you're merrily going along thinking well everything is okay and it's not, you know, from their reports. 

And that can do you a lot of damage when you do find out and you think, well, who can I trust? And they say well okay it's because you're mentally ill, you're just making this into a big thing. Well if it's, if they know you're mentally ill they shouldn't be putting you in that position anyway where you're thinking, you know, those paranoid thoughts. So yeah I don't trust them and I haven't, as I said I haven't had a lot of help over the years. I did, on and off I've seen different psychiatrists but to me they always feel, they, it's always felt like they're sitting on a pedestal, you know, or they're putting themselves on a pedestal and I'm just there as part of, well as part of their job really, you know, and so whatever they say goes and who am I to argue with them? And I think well okay I could do without that, you know. And part of it is getting a good doctor, if you haven't got a good doctor then you're in a lot of trouble, you really are. But I, I have good doctors and I can go, women doctors and I can go there and actually sit down and talk to them if I've got a problem or whatever and I'll feel like I'm being well look after by my practitioner. But I can say that I haven't had a lot of help from, apart from coming here to [mental health organisation] from any other mental health teams at all, you know.
 

For Mae, recovery was about finding herself and feeling glad to be alive. (Played by an actor).

So I moved into my flat in 1999, in the June, and I decided in the May of the next year, because I was coming here and I was getting support from here, I stopped seeing my CPN, we fell out, I couldn't get on with her and in the meantime coming here I started doing cooking, you know, cooking for all the, we used to have a kitchen downstairs and we cooked for everybody once a week and so I started doing that and then just generally getting into a good recovery with the people I was meeting was letting me know that I wasn't alone at last and I was able to reveal all the layers that were underneath the real me, as I'm talking now, the real me. 

And I decided to stop drinking in the year 2000 and I haven't had a drink since. I didn't go to AA or anything, which I'd done previously in my life and it had never succeeded but it was because I decided. And from tiny, tiny steps, as I was telling me friend on the phone last night, from tiny steps I made big strides and here I am today, 62 years of age, gone through lots of different things in my life but come through the other side and the feeling that I get about recovery is just every day I'm glad to be alive. Now I'm currently suffering from cancer, I've had three operations but I never, I'm one of those who has never give up so it's something that I know I'm going to beat the cancer as well. So, and I have great help from [my key worker] who I see once a week and I know that if I have a problem I can just pick up the phone and, you know, as long as it's within working hours he's here. But apart from that I'm very happy and I'm so glad that I live own my own and I'm completely independent of any wife battering man who can drive you absolutely mental.

I wouldn't say that it's all his fault, I would that I was from, a very young age, you know, from what happened to me, because there's parts of my life that I cannot remember at all, it's completely blocked out and with the help my brother who I've now met forty years later, because we hadn't seen each other for forty years I'm able to piece together small bits of my previous, you know, my life growing up. So that's a, that's a big help but also, you know, just living every day for me is, it's fun, I just love it. You know, I look forward to being somebody, you know, just living every day and okay to other people it might not seen like much but it's something never had in the past, I would never go out, I was, before I came here I couldn't even get from my front door most of the time, like months I'd be indoors, you know, and just nervous all the time and worrying about other people.

Mae says there should be more support for lonely or elderly people with mental health problems and more help in police stations. (Played by an actor.)

I did, you know, because one time I though well, you know, living on my own and my family weren't talking to me and of course I didn't know my brother was still alive then, I thought well what happens as I get older, what's going to happen to me, you've go to think about those things. And I did ask somebody from my mental health team if it was possible to have like a social worker and she said no, she didn't know how I would access that. I asked my doctor the same thing she didn't know how I would access anything like that so it just leaves you vulnerable. So the medication is dealt with but your peace of mind, thinking well I'm going to die alone and perhaps like that old fellow who died in our flats he was in his flat for three months before they realised, you know, is that going to happen to me? Well obviously it's not going to happen now but for other people who live on their own yeah there's got to be a network where these people can actually get the help they need. Even if they don't want to chat to somebody, somebody that can, you know, say well okay I haven't heard from so and so, I know that on the other hand that you've got a problem it might be intrusive, you know, the person might think you're being intrusive but if they agree to just like have somebody, like a carer who would say can I just make sure you're okay every now and again, you know, I think that could help so many people because there's so many lonely mental, mentally ill people'

Also with the police as well I think there should be a lot more help in police stations when mental, when people with mental health issues get arrested. I mean I've been arrested so many times and you're just handcuff-, their idea of keeping you under control is to handcuff you with your hands behind your back and leave you in a cell which is not right, you know. 

Then I think a psychiatrist or somebody, somebody with a mental, you know, if they realise that somebody is, you know, is not particularly a drunk, that there's something underlying with that person as well, mental health issues, then I think a mental health team should be available, a crisis team of some sort should be available to help that person while they're at in police custody, yeah. I never had any of that and so you can't, you haven't got access to your medication, you're off your medication, that's only going to make you worse. You're locked up and you've got, the, you know, like still the handcuffs on because they haven't got the time to put you on suicide watch all the time. A lot of the times they do but, you know, so there's that part as well, you know. So I've experienced it a lot of times so yeah. So I think the professionals need to look a lot more into what, you know, each individual case you can't lump everybody in together, you know, to say oh this is, these people are manic depressives, so their behaviour would be blah, blah, blah. Everybody is different. You know, I might act different to the next manic depressive or whatever and, you know, perhaps I might not show my symptoms because there's one thing about manic depression, depressives you really are clever at hiding your symptoms and very good at manipulating people, they know that and you're very good at manipulating things your way, you know, to your way of thinking so yeah, that, that, there is that. But everybody has got their own illness, it's like anything they're all individuals, we all are individuals and so we should be treated as such, not just lumped in together and well you can go to this group because you're manic, [laughs] you can go to that group because you're schizo, you know. No [laughs]. Just show us a little bit of care and, you know, good attitude and I'm sure most people respond to that. Well I've found it coming here anyway, you know, will respond to that.
 

Mae says getting her social security benefits and housing sorted helped her recovery.

Yeah I wanted to quickly mention it was like when I first moved into my flat obviously the money issue was a big one because I had to get a loan, they'll only give you a loan off the social whatever they're called. That was '500, that was to move, move me and for a cooker, that's it, that's all they would allow me. And I was living on '79 a week, I wasn't receiving anything else above that. And then when I came to, come to this place they had money advisors working for them and actually they've got their officers, apart from here, and they actually, people don't know about them which I think we should get to know more about them. I've got a, a great one, his name is [name removed] and he's the one who sorted out my pensions and got me on a, you know, something that I could live on properly and also on DLA because a lot of people should be entitled to what they're entitled to and they're not getting it so I really wanted to mention that. So it's, I don't know how you would actually access that so maybe it's something that could be looked into for people if they need to get access to, you know, the money advisor. Because I've put quite a few people onto it myself and it's been great for them too, because that is part of your peace of mind isn't it being able to live just day to day, week to week and know that you can actually pay your bills and not that have problem to worry about because then you could start, you know, that could start anything off in your head again. So that is just something I wanted to mention.

Okay and DLA is, what does that stand for?

That's for if you've got illness. I get the middle rate DLA because of the, you know, the arthritis and different things that are happening medically with me so I get that once a month and that really helps.

Right that's, is it Disability Living Allowance?

Living Allowance yeah. Some people qualify for it and some not but you, when you go to a money advisor what he does he works out exactly how much money you're going to get. He could tell me how much I was going to get for my pension and it was really good to know that actually I was going to be better off than [laughs] when I was, you know, working to be quite truthful [laughs] so yes it's been a great help for me. And as I said because it took quite a while for my pension to come through knowing that he was there to give them a phone call and say come on where's this lady's money and so on and so forth then it helped me. Because he did say to me, 'The first time I met you [Mae] you were seriously ill, you know, mentally,' and he said, 'The, the improvement over time has been great.' And I said to him, '[money adviser] that is partly because of you, because you've took a lot of my burden, you know, and let me concentrate on getting better in myself, you know, putting apart that, the worry of all of that.'

The money?

Yeah the money because it is a big issue for people, you know, it really is, because I, there's a lot of people that they're probably just living on the dole money and it's not enough. And, and some people are, you know, it's different, different things. Everybody has got a different story when it comes to money so once you go to an advisor he can tell you whether you're entitled, what you're, exactly what you're entitled to and, and help you all the way through that. He'll fill out your forms and do you phone calls and everything, especially if you're not up to it so that is fine I think. So I think that's another thing from mental health issue is to get somebody on your side to help you. It might seem small to other people but it's a big step for us, you know, yeah. Anything else?

Mae made friends through attending a BME support group and says she feels at ease with other people with personal experience of mental health problems. (Played by an actor).

Rethink will have some of the information for people as well if they want to join any of these groups and I think joining a group is a big help. You'll find that you make friends, you make the odd friend here and there and it's up to you if you want to continue the friendship outside which we have done with our, when we had our black and ethnic group going here we all made friends and we all had each other's telephone numbers and we'd go out independently as well. I've still got one friend that I see quite regularly and that's quite enough for me because I'm not used to having friends anyway so just having one or two friends is fine. 

But just that small group it makes you feel like you're being cared about and cared for and [my key worker] does a great job with that I think yeah. He can be a pest at times making sure that you, I've got to go out with him, 'Come on [Mae] you're coming for a cup of coffee,' that's only to get, make sure that I'm getting out. But he was, he was the one who really helped me able to get on buses and [get out?] because that was a big issue for me, I couldn't get on buses, I couldn't mix amongst crowds but now we go to town and we go out and it's fine. You know, I go out with him about once a week usually and it's fine and I'm really enjoying my life for the first time, yeah'

But sometimes you've just got to take it slowly and take advice from others if you can especially others that have been in the system and, you know, been there, done it, bought the tee-shirt, you know, and all the rest of it yeah. So I always listen to other people's, so that is why these group help, you know, when we used to have groups it was, you know, it's, it's good that you can sit down and you can compare notes with other people and, you know, what you're saying to them, you know, they're not going to go out on the street and chat you and say oh nut, nut, nut or whatever. You know, you're completely, so you're completely at ease and you could have a couple of hours away from, you know, the rat race and just enjoy yourself with these other people. And it's amazing, when you think about it, it is amazing the people that you meet, you know. You can go from the top person right down to the lower level, you know, on the street person but basically we're all the same when it comes to our mental health issues so everybody should take a bit of heart from that, yeah'

But no I do, I feel I've had help from Rethink, it's been bumpy at times obviously, we've all had our differences but if I hadn't had them where would I be, I don't know, I couldn't tell you that, probably not anywhere' Just show us a little bit of care and, you know, good attitude and I'm sure most people respond to that. Well I've found it coming here anyway, you know, will respond to that.
 

Mae describes being "high as a kite" and says her unpredictable behaviour meant people were afraid of her. (Played by an actor.)

Yeah because I used to have really violent bouts, I didn't know that I was manic depressive, I know I was, it was diagnosed on paper but I wasn't actually told by the, anybody outright that I was a manic depressive. And to me that was a big word when I did find out. But yeah completely, you know, I could be as high, like as high as a kite at one moment and then the next moment totally down so, you know, and very, very violent with it, you know. So it wasn't advisable for anybody to kind of get near me when I started feeling low so that is one of the reasons why I used to lock myself away because then I wouldn't have to deal with the outside world and they wouldn't have to deal with me. And that was really basically the only way to keep myself at a certain level'

But my, my behaviour was so erratic, you know, people were actually frightened of me, yeah that's why they used to call me Mad Max, yeah they were frightened of me.
 

Mae says getting information to people is important because it could encourage them to seek help, and may help to reduce the stigma attached to having a mental health problem. (Played by an actor).

Well I think information for people with mental, you do, you know, I mean it's all very well giving people leaflets but like this website obviously that is going to be a big help, you know. I mean I know somebody, it's a man and he is really depressed but because he's a man he refuses to acknowledge that he could be getting some help. And he's still locking himself away and plodding on every day. We've had discussions about it but I try not to discuss it too much with him because he gets quite angry about it. But yeah what could you, how could you help somebody like that? By this website, can that help? By hearing or seeing other people and realising that it's no big deal, you know, to put your hand up and say I need help. I mean if you had a pain in your arm or something like that you would say, and it's the same with the, with alcoholism, at one point you were just called an old drunk but now people recognise, AA, Alcoholics Anonymous and they realise that it's an illness. So if we can get actually people on board to recognise that not all mental, mentally ill people are violent, psychopathic or whatever that which actually we're just normal people trying to live our lives every day with the added burden of having a mental heath issue then perhaps, you know, people would get on a lot better. I think some day that, you know, it will be, it's becoming more and more recognised but how to access it you've got me, [pause] it's something I, I mean I'd really like to be able to say I had the answer and I really don't, you know, but this is a start, it's something we didn't have before.

And did you struggle to get information then?

I did yeah. I mean if I hadn't have come here [support group] I would have still been exactly where I was those, all those years ago.
 

Mae experienced discrimination when in hospital and was "slung out" of hospital for not co-operating and being violent. (Played by an actor.)

I finished up having a mental breakdown, tried to take my own life, put my head in the gas oven. So I was put into a mental hospital, [hospital] I think that must have been gone a long time ago now. I was there for about six months and eventually I got slung out for my, the, my psychiatrist because I wouldn't talk to him, so we weren't ever making any progress and I was in trouble being violent all the time. So they told me that, to leave and that was it'

I mean I remember the doctor gave me Val-, gave me a prescription for Valium one time and I thought oh I've had enough of this life, I really have and I just went home, bought a bottle of vodka and took the whole bottle of tablets and drunk a bottle of vodka. Well they said it was the vodka that saved my life because I brought most of the tablets back up [laughs] but I still wouldn't stay in hospital and get the help needed because I just didn't trust people, I'd never trusted people, you know. If it, when, when I was young and I can remember being examined by a doctor after I'd run away, a physical exam down below and he said, 'Oh she's sexually active.' In those days they didn't talk, but I wasn't sexually active, I hadn't had sex with anybody with consent it was what had happened with my brothers and my dad, my stepdad so, you know. And when I was in the mental hospital they did have me on Lithium and things like that but most of the time you just try and dodge your medication anyway, everybody did it if they could. So'

Why, why did you do that?

Because you didn't want to be a zombie, you know, most of the time you'd be falling asleep you'd just be, it's like, it's a chemical cosh, you know, and you don't want that. You want some control in your life and that is probably why a lot of people like schizophrenics whatever when they come off their medication they don't realise what a danger they're committing to themselves, you know. You don't realise, because you don't want that chemical cosh in the hospital'

Oh yeah I used to get beaten up and slung in the pads but that's going back, you know, that was, in those days that was just natural for it to happen in mental homes. You've got to remember that's going back to, that's just the early 60s.

To everybody?

To every, but mostly to me, to me this is what I'm saying because I was the only black person in, no there was another black man in there but'

So more so for black people?

Yeah I felt, I felt yeah, yeah. Because I mean when I got slung out it was for, it was for beating up this, this Salvation Army girl who used to blow her trumpet in my ear and really piss me off, you know. and I beat her up and, and he said to me, I can remember his words, what the doctor said to me, 'You black people are nothing but trouble, you bring violence,' he said 'I'm telling you to get out of the hospital.' And that was that.
 

Mae says herbal remedies have helped her, but urges people to be careful and to speak to their doctor and others who have tried them.

Yeah I've got a book on, on what do you call it? On herbs and I do yes I, you know, I eat natural organic foods and I'm very health conscious now about what I eat. I kind of never was interested, I mean I've been anorexic and bulimic and, you, you, you know, you go through the whole spectrum when you're, you've gone through the illnesses and especially when you've been boozing. And now I haven't got any sense of smell left or any sense of taste at all, I have to use a spray from the doctor to clear my nose in the mornings so it's kind of difficult [Laughs]. I mean I really want to enjoy the food but I can't taste it [laughs]. But I do I eat healthily and I go to the health food shop and get different herbs sometimes as a substitute, you know. I mean I used to take sleeping tablets, come off of the sleeping tablets and I started using the herbal remedy. I don't need to use anything now but that's, that was an alternative. 

And I spoke to, obviously you have to speak to your doctor because of your, your medication, you have to be careful also whether you're going to be using herbs or any alternative medicine you've got to talk to your doctor because it could go against your medication and you could make yourself ill so you have to be really careful. But I was okay with, with  the thing, you know, I just take like a cod liver oil tablet a day, that helps your bones and blah, blah, blah. Yeah alternative medicine is good but I wouldn't kind of depend on it as a complete medication, you know. Unless I was really sure, you know, of what I was doing because I think you, that's another pitfall you could fall into as well [pause] because we're all looking, we're all looking for answers and sometimes we're so desperate, you know, to just get a little bit of normality into our lives that we'll do anything to experience it. But sometimes you've just got to take it slowly and take advice from others if you can especially others that have been in the system and, you know, been there, done it, bought the tee-shirt, you know, and all the rest of it yeah.