Erika-Maye - Interview 10

Age at interview: 17

Brief Outline: Erika-Maye is 17. She's had depression and been hearing voices for as long as she can remember. She's also recently been diagnosed with Chronic Fatigue Syndrome. She says antidepressants, together with other therapies have helped her, as well as singing, music, writing and her faith. Erika-Maye has formed a group called Smile to help improve local CAMH Services. (White British).

Background: See 'Brief outline'

More about me...

Erika-Maye is 17. She’s suffered from depression “to a degree her whole life” but was diagnosed with it when she was 13. Erika-Maye was bullied badly in school and she’s also been self-harming since the age of 9. When she first went to see the doctor she was not taken seriously but told her depression was just hormonal and something teenagers should expect to go through. Her self-harming was labelled as “attention-seeking”. Erika-Maye never liked going to the doctor in the first place, but feeling undermined has left her not being able to trust health professionals to this day. Erika-Maye has always been hearing voices. She says she used to thinks it was something everyone experienced and only when she saw a psychiatrist about CFS was she told it’s not meant to happen.

 

Seven months prior the interview, Erika-Maye suffered a prolonged virus which led her to be diagnosed with CFS; Chronic Fatigue Syndrome. She says CFS has made her life with depression much harder. She gets tired very easily, has trouble sleeping, can’t read or concentrate for long and now needs help with many everyday tasks like cooking or washing her hair. Because of CFS, her balance and muscle strength is poor and she’s has difficulty chewing and swallowing. She also has to have a walking stick or a wheelchair because without support she’d walk like “a drunken penguin”.

 

Erika-Maye has stayed at a psychiatric unit as an inpatient, and later as a day patient, but says it wasn’t a huge help to her. Antidepressants have helped and she’s currently on Fluoxetine. She says “happy pills” can help along with other strategies by addressing the brain’s chemical imbalance. For Erika-Maye, these include going to Cadets and having good friends she can trust and who “take the mick” out of her. Also her faith helps her although sometimes this can cause her to feel anxious. Erika-Maye also finds comfort in singing and writing and is looking into yoga, aromatherapy and reflexology.

 

“Mental health system isn’t working as it should”, Erika-Maye says. The services and people supposed to help young people sometimes in fact make them feel worse. There is a wide lack of understanding of mental health, and in the case of young people, even more so. To tackle this, Erika-Maye started a group called SMILE with a few other young people she met at the psychiatric unit, and they’re been consulted on by their local CAMH services.

 

Erika-Maye has filmed a video dairy of her thoughts, which can be found in her interview clips.

Erika-Maye avoids crowds and hates cinemas, restaurants and pubs.

I just don’t like being around huge crowds of people. Sometimes I feel like they’re staring at me, but this was even before I had the Chronic Fatigue I’d either, sometimes I felt that they were staring at me, sometimes I’d just feel really claustrophobic, ‘cos there’d just be too many people. In some situations it would be okay, that’s the really strange thing, I mean, when I used to go down on my Cadet courses and stay on HMS Bristol there could be loads of us there and I’d be alright with that because I guess I knew because we are all this same kind of thing, all there for the same kind of reason. So that was okay. I probably actually feel better if I’m out with the Cadets than if I’m out be myself because I’m in uniform and I’m being someone else in a way. But being in a crowd, I try not to go out by myself anymore because I just feel like, I feel tiny almost that everyone’s kind of just crowding in around me…

 

I mean there doesn’t have to be that many people there that it will feel like hundreds. I hate restaurants and pubs and things like that, cinemas [laughs]. I made an exception about the cinema to go and see Mamma Mia ‘cos I had Abba and I knew it would sustain me. I just find it very difficult being around people.

At 13 Erika-Maye was told she was "too young" for the doctor to do anything about her depression.

I was seeing the school counsellor, because of some things that were already happening because, I can’t remember exactly how I ended up seeing him, but they basically told me I needed to start speaking to someone. My Mum said that some things weren’t right. So took me to see the doctor. He basically just blamed it on my hormones. Said that although it was depression they weren’t going to do anything because I was too young. Which was helpful [laughter]. There was a lot of stuff kind of going on at school at the time, ‘cos I was bullied quite badly. All the way through secondary school. And that was probably a major factor. One of my best friends attempted suicide in front of me when I was 11. Which isn’t really gonna help anyone. But the doctor seemed kind of reluctant to do anything because of my age.

 

And how old were you at that time when they said you were too young for us to do anything?

 

13, was the first time I went to the doctor’s about that.

Erika-Maye describes difficult experiences with a particular nurse on the ward who "made...

There was a nurse at the psychiatric unit and I, they were supposed to be going out on a walk and we’d gone out on one the week before, and they’d told me there wasn’t much walking, but I was actually stuck in bed for the next three days. So obviously when they said we’re going on another walk, I refused to go, which I thought was actually perfectly logical because I didn’t particularly want to be stuck in bed for the next few days. They tried to persuade me to go, and watch other people walking around. I was like, “Yes, because I love watching other people doing what I can’t do.” I got quite upset, understandably I think. I ended up staying. They sent me to sit in the lounge. I was crying by this point, and the nurse they sent in to see me was, is, rather cruel anyway.

 

No-one liked her. And it wasn’t just because she’d make the anorexics finish their food, or she told the depressives they had to laugh sometimes, it was because she was genuinely nasty. She told someone with an eating disorder they should just roll into the lounge. And she sat down opposite me flicking through paper work and said to me, “So what is actually physically wrong with you Erika?” I went, “Well they think it’s Chronic Fatigue.” She was like, “Well is it in tune with your mood?” She was like flicking through a magazine at this point while she was asking me these really personal questions. And I said, “No it’s not psychosomatic, if that’s what you mean?” She said “Did those words leave my mouth?” “Okay then.” When I’m in a mood where I feel quite low, but not completely down, I can usually cheer myself up, but I’d prefer to be left alone because then I can just think quietly and think about the stupid little things, and make myself feel okay. But she said to me, “You know if you don’t talk to me you’re not gonna get better.” “And not being funny but when I’m in this kind of mood I’d rather just be left along please.” She got up and slammed this magazine back down on the table, and said, “Well when you feel like actually doing something about your health, you can walk and come and find me can’t you?” just to give an example, and that’s not right. I don’t think that’s fair that someone who is being, ‘cos that’s just malicious, that someone who’s gonna react like that should actually be allowed to interact with teenagers who have got serious problems. Because we’re, we’re at a tier 4 status, so we’re like supposed to be the most crazy of the crazy lot. And yet she’s allowed to, I don’t think that’s right. She’s actually left now. We’ve put in a couple of official complaints. 

Erika-Maye's friends call her a "Hopalong".

Having good friends, having people who will take the mick out of you, and just laugh at you is fantastic, but laugh at you for the right reasons. There’s a couple that used to live next door but one to us, and they’ve moved up the road, he offered to give me a lift home the other day, and he texted me saying, “Are you ready you wobble headed feminist freak?” But he just calls me a nutter. But I know that if I needed him to be there for me he would, and I know that people I can laugh with will be there for me.

 

Just laugh at me, call me “Hop-along”, but they also know when to stop. ‘Cos if they can tell I’m either in a mood where I can’t deal with it or if I’m getting upset they stop.

 

They call me “Hopalong,” it’ll be like “Come along, run faster.”  one of my anorexic friends from the hospital, when she left we had a bit of a joke, , I’d tell her we were going to MacDonald’s for lunch, and she’d tell me we were only going after we’d played a couple of games of Twister [laughs]. So they just take the mick, but in a nice way, in the way that tells me that they’re there for me. There’s a difference between taking the mick out of someone because you care, and taking the Mick out of them because you want to hurt them. Saying things like “Come along Hopalong,” is quite amusing, whereas saying it after I’ve fallen over or whatever wouldn’t be. But it’s nice being able to laugh at myself and laugh at other people and I think the thing is the people that I’m talking about have always taken the mick out of me. So it’s not like, “Oh she’s ill let’s stop taking the mick.” Its nothing’s changed, they still think it’s hilarious to take the mick out of everything.

Erika-Maye was pushed down the stairs, spat at and poked with compasses.

I used to get pushed down stairs a lot, people would swear at me and spit at me, throw compasses at me. My friend who tried to kill herself, she cut her wrists in front of me, and I told one of my then friends about it, we then fell out, and she spread it round. Because I’d then developed a thing where I could not have my wrists exposed, I got very edgy about that, people then took to drawing red lines over their wrists and waving them in my face. And throwing compasses at me, throwing rocks at my head. General nastiness, just being quite cruel, making comments because I’m not stick thin and because I’m not particularly attractive. I would have remarks like that told to me everywhere and it was just quite a nasty school. But, I don’t know, I just stopped going after a while, I didn’t want to, I didn’t want to be there which is strange because I’ve always loved learning. I’ve always, always loved it, but I just couldn’t face going to school.

Erika-Maye finds faith both comforting and intimidating.

I’m religious, I try and find my security in that, but sometimes it’s no safe place.

 

Has faith helped you?

 

Yes and no. Yes because sometimes it’s the only comfort I find in that I know that the people I’ve loved and that I’ve lost are with God. And that everything that happens for a reason.

 

But at the same time because of my panic disorder, I quite often think, work myself up into thinking that I’m going to hell, and that to me is quite a major threat and quite a terrifying thing to console. So it does help me if I’m in a certain state of mind, but if I’ve already gone beyond a rationable, rational place then, then I’m already in too bad a place to make any sense of anything really. I think it was the same thing with the cognitive behavioural therapy that they tried to get me to use. If I was in a sensible frame of mind and I was thinking logically I could feel myself edging up to being panicky, then I could take a step back and breathe and think about things. If I’d all, because sometimes my panic attacks just jump out of nowhere, and if it happened like that, then not a chance [laughs]. Yeah.

 

So religion has been both?

 

Yeah.

 

Comforting, scary, would that be the word?

 

Yeah, maybe yeah. Intimidating perhaps, not scared.

Erika-Maye always felt that she's just "a waste of people's time".

I remember being very young, and blaming myself for things all the time, and thinking at the age of 4 or 5 how much better the world would be without me in it. And I’ve always heard these voices, always saying things like, you know, “The world would be so much better with you not in it.” “I want you to kill yourselves”, that kind of thing. But yeah I can’t remember not hearing them, and for as long as I can remember I’ve always felt like I’m just draining people, and being a waste of people’s time. And when they told me that the voices were depression related, then I was saying I’ve heard them for as long as I can remember, so.

Erika-Maye describes a panic attack. She hyperventilates, can pass out and all she can think of...

I’ll hyperventilate, and when I’ve built myself up into a panic attack I can’t think logically. The only thought that seems to go through my brain is I’m going to die. This is it, I’m dying, I’m dying, I’m dying. Because you can’t breathe properly and things go fuzzy ‘cos the blood rushing around, you can’t see properly, and although you can be told, “It’s okay, you’re not gonna die,” it doesn’t help. I don’t really know of anything that helps properly. Paper bag obviously helps the hyperventilation but the headache afterwards is horrible [laughs].

 

I’ve passed out a couple of times because my breathing just won’t even out. I’ve had some particularly bad ones where I’ve passed out several times in the same panic attack. ‘Cos I come back round and I start hyperventilating straight away, which is an achievement I think. I deserve a badge for that really, they’re not fun [laughs], they’re very scary both witnessing them and having them is very hard.

 

Unexpected panic attacks are the hardest for Erika-Maye because she doesn't have time to try to...

Sometimes there’s a reason for them [panic attacks] happening like the compass or seeing the woman that attacked me, things like that, are a logical build up to one, well logical… But sometimes they can happen completely out of the blue. Which I guess is mostly subconscious thinking, and then it just strikes you, and they’re probably the hardest ones to deal with because you don’t have the opportunity to calm yourself down before it gets mega out of control, and the fact that you feel like it’s already out of control you start to panic more and it’s a bit of a cycle.

Erika-Maye has a severe phobia of compasses and is unable to use them in exams.

I used to get pushed down stairs a lot, people would swear at me and spit at me, throw compasses at me. My friend who tried to kill herself, she cut her wrists in front of me, and I told one of my then friends about it, we then fell out, and she spread it round. Because I’d then developed a thing where I could not have my wrists exposed, I got very edgy about that, people then took to drawing red lines over their wrists and waving them in my face. And throwing compasses at me, throwing rocks at my head.

 

I still can’t handle compasses. I’ve had a complete phobia of them for ages now. And take compasses as an example, that’s a good one, if I know I’m going to have to go into a maths class where people are gonna be using compasses, even if I’m not going to be using them myself, I can worry about it for hours. And then build myself up so I’m so anxious, or like for a week, and go with what happened in my maths exam, where they told me I didn’t have to do the questions involving a compass, they got permission from the exam board for me not to do those questions. But one of the helpers in the exam didn’t know this; saw I didn’t have a compass on my table, threw one down at my desk. To which I screamed and ran out of the room [laughs]. I react in such a good way.

Erika-Maye says she always knew she was "ill" with depression but up till her teens she'd thought...

I was referred up to the Children’s hospital in [place name], because of what we now know as Chronic Fatigue. But the doctors couldn’t find anything wrong with me and the blood tests came back normal. So they referred me up to the [hospital name], and when she found out I had depression, and when she found out I self harmed, she wouldn’t, she basically told me everything was psychological. And kept me in hospital for 5 days. I wasn’t allowed to go until I’d seen a psychiatrist, psychologist, and social worker, and it was when the psychiatrist asked me at one point, do you ever hear voices? And I went, “Well yeah, doesn’t everyone?” And she said, “No not really.” And that’s when I realised okay, this isn’t normal. I always knew that I was ill. I knew that I had depression, obviously from the diagnosis from when I was 13, and it wasn’t something that just went away after a couple of months. So I knew I had the depression, but I always thought the voices were something everyone heard, ‘cos everyone always describes like a conscience or something, and I kind of connected it to being the same kind of thing.

 

Erika-Maye feels "cynical" about talking to doctors.

I kind of have a a thing about doctors and hospitals and everything, ‘cos obviously lost my family members, died in a short space of time, in the same hospital as well, I developed a hospital phobia, so I wasn’t too keen on the idea of going to the doctors anyway. It was quite a hard thing to work myself up to do, because I have panic disorder as well, being around people, it’s very difficult. So sitting in a doctor’s waiting room full of people is difficult, and then to be told that it’s just my hormones, really helpful, it’s so good for your self esteem to be told that kind of thing [small laughter].

 

I refused to go a couple of times, ‘cos I just didn’t want to, I didn’t, I was kind of on a different point where I just didn’t care. And I just really did not care. I didn’t particularly want to go in and listen to what they had to say because as far as I’m concerned, counsellors, psychiatrists, doctors whatever, when I’m in a very, in one of my cynical moods, the only thought I have is that they’re paid to sit there and pretend to care. So I’m a bit cynical about speaking to doctors and speaking to the counsellors and that kind of thing.

 

Why do you think that is?

 

I think if I can be so bold that a lot of it has to do with the media because there’s such negative press about everyone, all the time, and about how evil and how conniving people are, it’s quite difficult to then see people in a positive light., from the ways that my friends were reacted to, and the way that I was reacted to, initially it’s then quite hard to try and work up the courage to give people a second chance.

 

And I usually tend to, I’m not one of these people whose like, “Okay, you’ve, you’ve hurt me once I’m never, I’m never gonna trust you again.” I’m too nice [laughs]. I try to trust people again but, I find that quite difficult with medical professionals. I’m not quite sure why.

Erika-Maye describes self-harming as a form of control.

It’s addictive. It’s not one of these things you can just stop doing. I think people don’t understand that at all. It’s not as easy as, “Well I shouldn’t be doing that, so I won’t.” Because it’s difficult and it’s not attention seeking. It’s not one of these things that people do to, “Hey look at me I’ve got problems.” It’s, “I need a release; I need some control over something.” Because that’s what it’s for. And it’s not just me who feels that way, it was a discussion I was having at the unit the other day, it’s because everything else just feels so crazy, that way you’ve got some control over something. Even if it’s not exactly the most sensible thing in the world to be doing. A lot of the time, I mean I have attempted suicide in the past, but a lot of the time it’s not as a suicide attempt it’s I need some control. I need to let this out. And I really think that needs to be more understood. Obviously not, it it’s never gonna be one of these sociable, socially acceptable things which is perfectly understandable, but at the same time it should be understood that just because you’re doing that to yourself, you’re not doing it for attention.

Before being diagnosed with Chronic Fatigue Syndrome, Erika-Maye struggled to be taken seriously;...

And they then decided to refer me up to the hospital. Went up there saw a doctor, who examined me; I had my stick at that point. Told me that she couldn’t find anything wrong with my reflexes, my muscle strength, anything like that, and when she found out I had depression, she decided it was all in my head. That was really difficult, that was the closest I had felt to suicide in years hearing that because I felt like she was actually telling me I was insane.

 

She took my stick away from me because she said I didn’t need it and told me I had to walk without it. That was humiliating. Because I walk awfully without my stick and I walk around inside without it because it’s just my family or my close friends that will see and that’s okay, but I was in a children’s hospital, and she made me walk around without my stick.

 

She then, and I was saying to her I have had the depression for ages, I have had this for such a long time I have had the headaches side of it, I have had the psychosomatic side of depression, I have had the headaches, I have had the nausea, I’ve also had the feeling of I don’t want to get out of bed and face the world today, but this isn’t, “I can’t, I don’t want to get up and face the world today,” this is, “I cannot get out of bed today.” It’s completely different, and she wouldn’t listen. So then I saw the psychiatrist, the psychologist and the social worker, got discharged.

 

I went for a meeting in [place name] with another psychiatrist who changed my medication, and then I ended up at [hospital name], the week after that and they doubled my dosage of antidepressants. And it was only there that one of the psychiatrists actually started to take me seriously. Because this was a bunch of mental health specialists that couldn’t understand why I was there really. ‘Cos I mean it was obvious that I’ve got depression and everything, but this was different. And, oh, it drove me mad, it was horrible and I sat there and I would cry myself to sleep each night thinking, “Shit what if I’m wrong, what if this is, is actually all in my head.”

Erika-Maye describes why she thinks 'it's horrible having depression in the family situation'.

I think its horrible having depression and being in a family situation because some of the time I wanna just be by myself. Because either I can feel I’m in a bad mood but I need to cheer myself up, or I can feel I’m in a bad mood I know I’m gonna get easily annoyed by people, or I feel like I’m in a bad mood, everyone else is in a good mood, I don’t want to rub it off on other people. But if you spend a lot of time by yourself you isolate yourself, whether it’s intentionally or unintentionally. And that automatically creates friction within a family environment.

 

I didn’t realise up till recently how much it’s affecting my brother, and I feel very guilty, because it was, Mum told me the other day that he’d said a couple of weeks ago he was worried about coming home and just me being there, ‘cos he was worried that I was gonna hurt myself and he wouldn’t know what to do. That was unbelievably painful to hear. ‘Cos I love my brother. Drives me absolutely bonkers, but he’s my little brother.

"Just be there and just let them know you care".

Just be there for people. But don’t force it, if people are in a good enough place with themselves to talk to you, and say that something’s wrong, then you should feel honoured because it’s not an easy thing to do. But if they won’t talk to you don’t take it personally, it’s not that they don’t love you, it’s not that they don’t care for you, it’s that right now they can’t deal with the conversation. And don’t pry, because the worst thing you can do is go up to someone and go, “What’s wrong, what’s wrong, what’s wrong?” ‘Cos that will just make them feel so much worse. Just let them know you’re there for them if they need you. And that even if it’s just watching a soppy film and eating lots of chocolate, you know, it doesn’t have to be a deep conversation, just let them know that you care. And don’t feel offended if they don’t respond in the way that they used to or that you hoped they would, it’s not personal, they do love you, and they do care. It’s just too difficult.

"Don't judge or criticise us. It is really hard to be open about what we've experienced."

Just give us a break you know, dude. We’re good people at heart but things are difficult. Don’t judge us and if people are obnoxious and rude, this is to the professionals okay? If you’re rude and obnoxious don’t work with children, don’t work with children with health problems ‘cos you just don’t need it. They don’t need it, we don’t need it. Get out.

 

Just consider what you say and what you do, because saying the wrong thing, or reacting in the wrong way, considering you are a professional, and if people have decided to take a chance on that, and are there even if it’s voluntarily, especially if it’s voluntarily, it’s gonna be very hard for them to open up if they’re taking the risk, deciding to open up, don’t, just don’t criticise her because it’s very difficult to be open about what you’ve experienced, how you’re feeling. And some things that you say or that you feel just make you feel crazy. You feel like you are actually insane. So don’t react to people like they are, just because they have a mental health condition it doesn’t make them any less intelligent, or any less capable of dealing with the minutest detail of their condition.

Don't say one thing to them and another to their parents'.

Don’t say one thing to them and another thing to their parents, because that’s just pathetic, okay? We can deal with it, just don’t lie to us. We’re pretty cool like that. We’re people as well as conditions.

Erika-Maye has had very little understanding about self-harm, even from among professionals. She...

It’s the general reaction to it. They completely ignored it at my old school ‘cos I wasn’t the only one that used to self harm. I used to do it in obvious places, but people used to do it blatantly obvious and that was cries for help and I was going to say I don’t see anything wrong with that, but I guess that doesn’t make much sense. I think that if someone’s having to cry out for help that loudly then something has to be done. I think even at the psychiatric unit they don’t really know how to deal with it, because when I came in the other week and my arms were covered in marks the reaction I got was, “Oh you shouldn’t be doing that it’s really bad for you,” [laughs]. That’s really helpful, why didn’t I think of that, thanks guys.” I think that people generally don’t understand mental health and they don’t understand self harm because of that, ‘cos it’s such a common thing and people do it in so many ways, and it’s just, I hate the fact that people associate it with attention seeking. It’s not, of course there are always going to be some people where they just want the, want the attention whatever the cost, but if someone’s honestly having such a difficult time that’s the only way they feel they can let out how they’re feeling, then they need help.

A video diary by Erika-Maye

A video diary by Erika-Maye.

Erika-Maye didn't want to go on medication first but says it has helped her to "get to a level...

I have found them [antidepressants] helpful. My view on anti-depressants is this' I didn’t want to go on them at first, because I’m not a take a pill and everything’s fine-person. I think there are more than one way to skin a cat kind of thing. But they had helped, I don’t think that you can take anti-depressants and automatically everything’s fine, it has to be a combination of things. And I don’t, now I don’t see anything wrong with taking anti-depressants along with other, other types of therapy to help you feel better, because in the end, what depression is a chemical imbalance, and all the anti-depressants do is balance the chemical back up.

 

I was quite sceptical at first and not happy about having to pop a pill every morning, but they have helped me. They had at least on most days got me to a level where even if I’m still feeling crap I can think reasonably logically. I can think okay, everything’s kind of black and grey today, but the other week I had a really fantastic time. Obviously I still have my down moments, but and it’s very much with me that I can be feeling absolutely fantastic, but if one little thing goes wrong then I plummet. But especially with the Chronic Fatigue, I don’t, I think I would’ve driven myself mad if I didn’t, if I wasn’t on the anti-depressants, and they really do help. I was a bit of a cynic beforehand, and even for the first couple of months, because the Citalopram weren’t helping, but being on the Fluoxetine and being on the dose which I’m on,

 

Yeah.

 

It just helps a bit because obviously it’s not a simple solution, it’s not a take these everything’s gonna be wonderful straight way. It’s a process and they’re one of the steps in the process, I don’t see anything wrong with them now.

 

How long did it take for them to kick in? About?

 

Oh well I was on the Citalopram to begin with and they upped it to 20mg and then they changed me to Fluoxetine 20mg just after I was discharged from the [hospital name], so, end of April, and then they doubled my dosage being 6 weeks ago, and since they’ve put me up to 40mg I feel a lot better. Obviously it helps to have a few other things to keep my black clouds at bay, but, I think they can help. But they can’t be solely relied on.