Helene - Interview 04

Age at interview: 23

Brief Outline: Helene has had sickle cell anemia since birth. Sickle cell is when the blood cells are shaped like a half moon and they cannot pass through the veins so easily and this causes pain in, for example, elbows and knees. Helene takes penicillin and folic acid everyday and needs to avoid getting cold.

Background: Helene lives with her mother and her sister. Finished her A-levels and now works as a beautician. Ethnic background/nationality' African.

More about me...

Helene is 23 years old and has had lived with her sickle cell condition all her life. Her grandfather on her mother's side of the family had the same condition. Helene lives with her mother and her sister.

She remembers that as a child she used to be rather shy and used to spend weeks at a time in hospital missing lots of school, so it wasn't easy for her to make friends with other children. As she grew older her mother was able to look after her at home rather than going to hospital everytime she wasn't well. 

Regarding her schooling, she considers herself lucky because at the age of eleven she started to attend a small private school and her teachers gave her the individual attention she needed to catch up with school work. Her school was next to the hospital so her school friends used to go and visit her at lunchtime.

She explains that when she gets ill she feels quite tired, dehydrated and experiences pain in her joints (e.g. in her elbows, knees, etc). Sometimes she needs to put her arm in a sling and if the pain is more extreme she is unable to walk and has to be in bed for about two weeks or until her pain diminishes. Sometimes she can stay at home but at other times she has to go to hospital where they give her morphine injections to control the pain. The most important things she needs to do to prevent getting ill is to keep warm, have plenty of rest, and avoid getting a cold.

She says that the most important person who has helped her to understand and control her condition is her mother. Her mother has taught her not to let sickle cell condition limit or rule her life. She does dancing and acting, both things that she loves. Nonetheless, she admits that she can get 'down' during those times when she is ill and in severe pain and that it takes her time to get back on track. 

She finds that doctors are not, on the whole, very good listeners and advises them to be more compassionate and try and understand that if a person has lived with their sickle cell condition every moment of their life, the doctor may not understand all the intricacies of what this is like. Regarding her treatment she is given penicillin and folic acid to take everyday.

Says that she has learned from experience to take care of herself and has no problem in cancelling a social activity, like going out at night, if she is not feeling very well or if she has to work or has a dancing session next day. 

Originally learnt about sickle cell disease from her mother. She has looked for information on...

Who had provided you with  information about sickle cell and how to take care of your condition? 

Mostly my mum and probably her through the doctors and she's read up about it. When I, when I got older she, I stopped going for hospital as much and my mum was able to look after me at home. And then as you get older you, you know the things that, like if it's cold outside and say if your friends are going out and they're not wearing a jacket you know that you have to wear a jacket. Otherwise if you get too cold then you're going to get ill. So in that sense I could take care of myself but if I did get ill because it happens my mum can look after me at home to a certain point with the medicines that I take. And if I'm taking the highest level of medicine and it's not working for me then I know that I have to go into hospital.

I said sometimes I don't listen to the doctors so maybe I don't know if that's a good way because other people might not listen as well. Maybe giving out like letters or something or holding. I suppose they do hold functions and stuff. That kind of thing. 

Have you looked on the Internet for information or not? 

I think I did when I was a bit younger but I think the information that I came across of sickle cell more or less tells you you're going to die at a young age. So it wasn't very encouraging for me to go back and look at more information [laugh] because the information I found was quite negative information but I don't know if there are and websites to go on or if I just Google 'sickle cell' the first thing that comes up. I just clicked the first thing that came up and it was a bit negative so I didn't really go back.           

How did you feel about finding this information? Were you scared or? 

I was upset, upset. I think I was definitely upset. So I just never went back to look at it again [ha].

She has learnt from experience about taking care of herself. Says that when you are a teenager...

What do you think will happen if you do not  look after yourself?

You'd just be ill all the time [laugh].

Have your doctors sort of talked to about it or not?

About not looking after myself?

No because I think I was. I've always looked after. Well I've always had my mum look after me and then encourage me to look after myself. So.

I would like to know how she encouraged you to look after yourself?

Just by, by her looking after me. Taught me to look after myself as I got older. And I know when I don't look after myself that I can get ill. So the doctors have never had to encourage me to do that really because I've learnt from experience. Like a little things like if when I was younger my friends were going out and they don't want to wear a jacket and I was like, 'I don't wear a jacket' [laugh]. And then I'll get cold and I'll get ill so I've learnt as well if I, sometimes you don't want to listen to your mum, you don't want to listen to the doctors. So you experience it for yourself and that way you could have avoided the two weeks of being ill if you'd just worn a jacket. 

So it's you know, it's the little things. And now I'm a lot older I'm a, like my own person now. I don't. You know if my friends go out in nothing and it's raining or cold and I still wear my jacket. I still do what I want to do and I still have fun. And afterwards I still, I'll still be well because my friends aren't the one that you know, they can go out naked and they can still. They're not going to get ill. There's me that's going to get ill. So by doing things like that I've just learnt it's not worth it. And I've been through it so now I know just to take care of myself.

You went through it, of not listening to your mum or not wanting to listen to the doctors?

Yeah or just trying. I think you're trying to be like everybody else but your body is not like everybody else's.

Ok. So that's the message you, you got from your own experiences.

Yeah.

Presumably you rebelled when you were'

Maybe I don't know but I think because like when we started going clubbing and stuff so like started going out at the night when I'd never used to. And sometimes you just want to, you know, you just want to be like all your friends. But then you have to remember, you know, none of your friends have sickle cell, you're the one that has sickle cell. So they can do things like freeze to death [laugh] and stay up all night and get no sleep and you know all they have is a hangover or they might get a little bit of a cold but the effect that your body will have is that it will just go into a crisis. So I don't know if it was rebelling but it was just me like if someone. I think for me if someone tells me something it's not that I don't believe it. Most of the time I want to experience it for myself good or bad and think, 'Ok now I understand'.

Ok. Was it also a little bit the fact that you wanted not to be different from '

Yeah you want to be the same as everybody else. You want to do all what they're doing because that's your group of friends. But I mean I now know that I can do that but I just have to make sure that I do the things that are going to keep me from, you know, prevention of being ill as well.

Sometimes she feels depressed about her sickle cell disease when she is ill and in pain.

How do you feel about having sickle cell?

Sometimes you can just, every day is fine. You don't even know that you have it because you don't feel any pain. You don't feel anything. And then sometimes you're just depressed because you get ill and you have to take this medicine or you know, you'll be doing something then you get a pain and you're like, 'Oh here we go'. You know where it's very, very painful. So sometimes it can be a bit depressing. And, but I think what I've learnt from my mum is just not to let it hold me back. So it's quite hard to have been in bed for like a week and then all of a sudden get up and leave the house when you've been indoors for, you know, a whole week. It's quite daunting like back in the real world kind of thing but. So that's the only downside really.

I think the most important thing is not to hold yourself back. To not be afraid to do what you want to do just because you have sickle cell or you have anything because then you're not living your life. And there's no reason why you can't do what everyone else does. You just have to know your own body and know that just to keep yourself warm or whatever you know that causes you to be ill just make sure you're taking care of that. And you can just do what everybody else does.

When you are ill does it sort of emotionally kind of affects you, the fact that I've got to have to stop doing what I'm doing and have to look after myself and then? How do you feel around that time?

It's quite depressing sometimes because you just feel like you're missing out on life. Like you're stuck here. You can't, you can't move. You can't walk. You can't. You know, you lose your appetite and you just stop watching the tele all day which is sometimes nice to watch the tele all day [laugh] but not when you've got pain. You know you'd rather be out doing something else. You know everyone else is carrying on with their lives. Sometimes you feel like people don't understand how it feels. But yes it can be quite depressing.

Her mother enrolled her in dance classes. She loves her dancing and would only give it up if it...

I think from my mum's point of view I think it was very important for her to not just kind of keep me at home all the time to make sure that I was still doing everything else that everyone else was doing rather than. Because it keeps you fit and healthy as well. It's like a, you know, you know, dancing or just going out and doing stuff. It's just activity like a form of exercise so you're not sat at home all the time. So you know, you just, you just keep your blood moving basically because I think that was very important.

Ok. Did you do any, apart from dancing do you do any other exercise regularly or not?

I used to go to the gym but I don't like the gym. I don't like exercise but dancing is my exercise because it's quite. It is like an aerobics class when you do a dance class. So that's my exercise.

Yeah things like that I do. Obviously I don't take the medicine that I'm meant to take but if they say to me, 'Oh you shouldn't do the dancing or you shouldn't do that'. It's a big part of my life and I'm, and if I'm managing to do it and stay well then I'm going to do it. But if I was doing it and it was causing me to be ill then I'll have to think again about it but it's not so. In that sense I'm not just going to stay home and do nothing so.

Being on an adult ward was like being put in 'an old people's home'. She says that staff do not...

I just don't think hospitals are very nice places, not when you're growing up and then you get put on a ward with really old people that seem to be dying. I've been on a ward where someone has died before. It's just not a nice environment to be in. So I prefer being at home.

Ok. So it's more kind of the environment that it depressing.

Yeah definitely the environment yeah is very depressing.

That they don't have a ward for young people and so on?

Yeah. Every time I've been to the hospital I've been with just old people, really old, like it's been like I've been put in an old people's home [laugh]. And it's not nice, you know. And I think there should be a ward for teenagers, not that it's, it's not meant to be a social club but you feel a bit kind of like, oh does this mean that I'm dying because I'm ill with these old people, you know. So it's like oh you know you just want to go home. You just want to get out [laugh].

Well what about the doctors and nurses? How do you relate to them or how do they relate to you?

It's alright. I mean sometimes you can get really horrible nurses and horrible doctors but sometimes you can get, you know, nice nurses and doctors.

What do you mean horrible?

Not horrible but they just don't listen to you. I think sometimes when say for example when I used to live in [city] I was really the only person with sickle cell in [city]. If there was another person they would be from overseas or something or. So I've had the doctors there since I was little but like when I moved to [city] obviously they don't know me and I think because the doctors have studied medicine they think they know more than you know. And I'm not saying I know more than a doctor but I know my body more than anybody else knows my body. So I know what medicines I, I should take or what medicines I like to take or medicines that make me feel really gross that make me throw up and what medicines don't. And sometimes they don't want to hear that. Or you know, or like when you go to, if I go to hospital by an ambulance even if I'm in a lot of pain I can say, 'I've got sickle cell you need to give me some morphine really' [laugh]. And sometimes they just don't want to hear that. They want to do all these tests on you. Then they want to get the doctor and they want to waste all this time and then they go, 'Ok you've got sickle cell you need morphine', And you're like, 'Well I told you that when I first came in'. So sometimes they don't want to hear it from you.
 

She does not feel her sickle cell disease limits her from going out but she avoids going clubbing...

What would you have to take care of if you were going out with your friends or what were the things that you were not able to do, for instance if you were not feeling well and how you felt about it?

If I'm not feeling well then I'll make a decision if I'm, whether I'll go out and if I go out I'll come. I'll just dress really warmly and I'll take my medicine with me just in case but I won't go clubbing or anything. I'll maybe go to the cinema or something. But I'll just make sure that I keep warm mostly. I'll stay hydrated, always have my medicine with me. I don't, I don't really give myself any limitations.

Not?

Not at all but I make sure that if by chance that if I go out and I'm feeling fine and then I feel a little bit of pain then I know not to overdo myself. So just to make sure that you look after your body really so that you can still do the things that everyone else does so that you don't get ill as often.

Tell me more about sort of friends and social life. You said that you don't think that you have been limited by your condition.

If I know that I'm not feeling. If I'm feeling tired or if I've got a pain somewhere then I know that I'll maybe sit out of whatever we're doing. But if I'm feeling fine then I'll just do it. 

Ok. Do you have to cancel sometimes.

Yes sometimes if it's. Oh I think I cancel mostly if they're going clubbing because if I've got to work the next day or if I've got, going dancing the next day I know that I'm not going to get enough sleep. And then I'm going to be tired and then being tired and doing something could lead to pain so. But it's mostly going out during the night I cancel.

I think when I was growing up in [city] all of my friends knew and they would be really supportive and come and see me and stuff but now I've moved to [city] it's not something I really mention unless I am ill. But no one's ever been unkind to me or anything so I've been quite lucky in that respect. But I think if I am ill I'll just say to people, 'I'm not feeling well today, I'm not feeling too good'. I won't necessarily go into detail. And I think if you, sometimes if you do some people just don't understand how serious it is. So that's ok [ha] because you can only explain how much you can explain but. So but I've been quite lucky that people have understood.
 

At the age of 11 started to attend a private secondary school and despite spending time in...

I think because I was quite ill when I was younger I was very shy. And because I used to be in hospital weeks at a time so that's why I was very shy and I didn't have a lot of friends because I'd miss long periods at school. So I was just quite shy and quite, kept myself to myself. So.

Because at eleven I started secondary school and I went to a private all girls school which was really good because the classes were really small. It was quite a small school. So if I did miss out on work there, you know, there was. The teachers were available to catch me up on things  you know, when I go back to classes because there would be maybe twelve to fifteen, maybe eighteen, maximum twenty people in the class which is not a lot of people. They were able to give me one-to-one attention but I never really was behind. I was always able to catch up whereas if I think I was in a more, I don't know, like a state school that had like a hundred people I wouldn't have been able to catch up because they wouldn't have been able to give me the time for that.

Yeah I went for. I did my GCSEs and I went through to do my three A-levels as well.

Ok. So you completed those. Ok.

Yeah.

Was there much interruption due to your condition during'

During my GCSEs  before then I was, I got quite ill and I got taken to hospital and I had pneumonia. So, but I was able to come out and still do the exams that I had missed. I was able to like retake them because I was in hospital and then some of them I had to do the year after because you're not allowed to retake them. So there was an interruption but I managed because I was staying in the same school to do A-levels I was able to. So when I was doing some of my A-levels I was taking some of my GCSEs that I'd missed.

And at this point when you were a teenager what happened to your social life? Were you still shy or...

No I got more confident and I think because even though I'd missed school because they weren't so many people in the school, it was quite a small school. So it was not like you'd get lost amongst friends or loads of people so even. And the hospital actually was next door to my school [laugh]. So when I was in hospital my friends used to come on their free periods, to come and see me. So that was quite handy.

Sometimes she doesn't tell employers that she has sickle cell as she's found that they don't...

Ok. What about your employer or your employers? What has your experience been?

I think when I first started work, I don't think I mentioned I had sickle cell. Only because I don't really get all that often because I look after myself. You know it was very rare that I'd have to go to hospital every couple of months or something. But if there was occasion that I wasn't feeling well I wouldn't have to call in sick that often. But I think there was a period where I was working somewhere and I was, it was just a period where I was getting quite ill and, and then I just left the job because I kept calling in sick all the time. But there weren't, I don't think they were ever unkind to me or anything. But it is hard because that just was a period where I was, just kept being ill. And you see, you know, I didn't want to go into work and just make myself even worse and have to go to hospital. So that was quite hard.

Ok. When you fill in a form, application form do you put that you have sickle cell or not?

I think sometimes I do, sometimes I don't [laugh].

Ok. And when they interview you do they ask you about it or?

I think I only put it on one. I think on the second job I had and because it. They had this like long. They had like a big form that you fill out and I think that I mentioned I had sickle cell. And then I was given a whole lecture about it and. Not in a bad way but she was like, 'if you ever collapse at work'. And I was like, 'I've never collapsed before in my life' [laugh]. So but I think on other application forms I don't mention it because I'm not the kind of person to just collapse at work or just. You know I, I know like if I'm not feeling well then I'll know that I'm maybe going to be ill. It doesn't just come on like that. So I don't really think there's a reason for me to write it down.

Her mum has never let her go to hospital by herself and has always taken her sister along too.

I think when, because I have a younger sister as well and my mum's a single parent, so when we were younger literally she could just pick me up and pick my sister up and there were two little girls. But as, you know we're both older now she doesn't really want to leave one and, you know, leave my sister at home. I mean it's hard. And you know to deal with now we're working and. And if so, if my mum can look after me at home. And the thing is my mum's always. There's never been a time when I've been in hospital by myself. You know, in the morning my mum's there, afternoon, mum's there at the night time and so is my sister.

But now as we get older my sister has to go to work. You know then my sister has to come home by herself and my mum can't be in two places at once so it's quite hard. So as I got older my mum was there less of the time with me so she could half the time be with my sister. So if there is a time when I can stay home and the pain's not that bad then it's easier because my sister come home from school, come home from work and my mum will be there for both of us.