Between the support group ‘ and my friends outside?

Yes.

There’s not really a difference between ‘ sorry between the group and my friends outside.

But you know we’re all ‘ like my friends outside they don’t really treat me like I’m you know not treatment me like I’m different. But they most of them they know that I have you know sickle cell. But they don’t really look at it as a disease or a disorder. I just go about you know my life and it’s the same as within the sickle cell, we don’t really try to think about it that much. We just get on with our lives and stuff I guess. But you know they’re all there to help so ‘

Some I’ve told them like what in this case you know in this situation this is what to do. But the others they’ll just probably react and they’ll just call 999 or something. But you know nothing serious would happen. I’d probably just’ I’d fall into a crisis and then I’d just go home or something if anything you know. But I’ve never really you know been in that situation when I’ve been outside and something’s happened to me. I’ve never had a crisis outside I think it’s always indoor.

Why have you decided not to tell?

It’s not more of, that I haven’t decided to tell, it’s just people, you know, don’t know, like nowadays everyone’s in, you know, a hurry, people don’t really have time to, not time but everyone’s kind of doing their own thing and like my close friends don’t, even those who are not my close friends, some of them know but college is, I’m, every time I’m in college I’m only there for one thing, and soon as college is over I’m out. So I don’t really mix with a lot of the people. But apart from that, like, you know, my, some people at the college do know. And the teachers know so if anything, but it’s not something that’s always brought up, like, you know. They’ll keep it private and no-one really talks to me about it.

Yeah my mum is kind of overprotective of me. She doesn’t really like me staying out too late and but apart from that you know she, she doesn’t really stop me doing ‘ I can you know I do ‘ I try I try not let my sickle cell get in my way. I just try and live you know and ordinary life and everything so I still go out and everything.

What are her concerns?

She just does ‘ she ‘ me being a teenager she doesn’t want me to do you know do anything silly or just do something that would get myself hurt or things that I know I know my friends can do and not have to wonder about.

Like what?

Like for instance she doesn’t like ‘ like I said before alcohol ‘ she wouldn’t want me to drink. And even though I’ve never suffered from it but it could catch up on me. She wouldn’t want me to drink and then I’d become ill. While if my friends were to drink, they wouldn’t become ill there you know. So she you know she’s very overprotective and she just other things like sports and stuff yeah.

Yeah. Not really with that and she know that ‘ me what she know that I don’t really not that I don’t you know pay attention. But the fact that now that I’m older, I’m maturing she doesn’t ‘ I don’t really pay attention ‘ I sometimes forget that I even have sickle cell. And she tries to remind me like I couldn’t do silly things at times like you know just I’ll forget to take my medicine for a long time. And then you know I could ‘ something could happen to me and then she would you know have to go out of her way to make me better and everything. So she always trying to like you know just stay safe and put me in the right direction so I can do the right thing, yeah that’s it really.

Basically I suffered from much more pain and they call it crisis. I suffered with a lot of pain when I was from the age of six to probably thirteen or so yes. I was in hospital quite a lot and I used to always be ill. I used to just used to be in pain. But nowadays that I’m growing older I’m getting out of my teenage years, I don’t really suffer that much from it. I get pain occasionally but I don’t really get it that much.

Any time I would get pain it would normally be, well I could get it in different places, my chest, my stomach, sometimes my leg and my arms. But any time I would get pain at, the first thing I would do, just take my medication. And I’ll just try and rest. If I’m, for instance, I do that and it doesn’t work then I, like part of my body my mum would probably massage, or, you know, my sister would help massage. But the pain, again in different places like, they, when I get pain in my legs and my arms is, that’s, that’s not so bad, but my chest and my stomach and my back those are like the worse places. But the, the pain would normally last for around, if it’s not so bad probably up to 3 or 4 hours. If, if it is bad probably all day. So I just try and rest, you know, I don’t do nothing. I just lie in bed. So.

And for how long do you need to rest?

Just when I know my body, you know, much better and I’m feeling a bit like, when the pain’s gone that’s, that’s when I know I’m, you know, much better. But I just try and, if it’s something that’s, I know could get serious I just rest all day. And then the next day, if I’m feeling better then you know, I just go about my day and everything. But if the pain, you know, starts to increase, that’s when I know I need to rest and I just need to take my time.

Most people they continue to suffer. It depends how you treat yourself like you know it depends how you look after yourself I should say. But me I try to do the right things all the time. I don’t go over my limits you know. I don’t play too much sports. And I know my boundaries like I don’t go too far and I always limit myself with anything I have to do. But it depends what type of person you are and how you treat yourself basically.

Tell me more about what you do what you need to do to in order to look after yourself and prevent a crisis?

Basically it depends like in the weather ‘ the weather can be cold at times, basically you just meaning dress warmer and don’t go out into the cold. Try and stay away from like you know bad weather like rain and just also always trying to keep warm. And just not going over the limit like such as doing major sports and other things like that just ‘

Okay. How do you feel about having that kind of limitation to doing sport?

I’m not really bothered by it because at the same time I don’t really play that much sport. But I can do quite a lot at sport you know I do different activities. And you know it doesn’t really bother me that much that you know that I have to stuff that I… But I know how my body works and you know there’s only a certain amount I can do before you know ‘ I would know when I have to stop so I just ‘ I know my body really well.

Okay. Do you take any medication?

Yes. I take penicillin and folic acid every day.

Every day?

Yes.

Throughout the year or ‘?

Just basically every day like every day of the o

How was that?

I didn’t like it, it’s not the same as like a children’s ward. In the adult ward they out me next to just different people. There was a man he was homeless for around twelve years and he had different problems and I was next ‘he was basically next to me and I didn’t like that at all. And you know they didn’t really care. They just they didn’t really pay attention to you as much as they would to children. So I don’t really like it but.

So you were sixteen years old and you ended up next to someone you didn’t feel very comfortable with?

Yeah.

Yeah. I think hospitals should just put different age groups in different wards and also the serious conditions, they should put in one ward. And you know the not so serious I can’t say not so serious but those who you know that just don’t suffer that much I should say in another ward. But apart from that it’s ‘ apart from the wards it’s the nurses as well they don’t ‘ they need to you know some some of them they don’t really pay attention to the patients but ‘

No?

When I was there they didn’t pay attention. But.

Can you give me an example of what happened?

Like for instance if I’m in a children’s ward and you know I needed assistance, they would probably come straight way. But when I was in the adult ward, you know, you would call, you would call and they wouldn’t do nothing, they wouldn’t respond so that got really amazed. And you know just the fact that they put me next to a ‘ I know that you know everyone should share a ward and everything but this man you know, he wasn’t hygienic. He wasn’t you know enough ‘ he wasn’t clean. He’s been homeless for twelve years. And he’d just come into mine you know, come into my space and I just didn’t like it, that’s all so.

Can you tell me a little bit about that?

Yeah, primary school I spent, I was in hospital quite a lot and I did, like, suffer quite a lot but I, the, everyone, most of the people in my primary school knew that I had sickle cell and I was the only one in the whole primary school who suffered from sickle cell. But, they didn’t really, at that time no-one really knew about it, sickle cell, even the teachers didn’t know. And like, they wondered why I was off so much and they, primary school they didn’t send the work at all. If, you know, I wasn’t in, I would have to do the work when I came back. But it wasn’t that bad. I was in hospital but I would probably go in twice a year and, you know, after that I would, I, the rest of the year I would be fine. But there was a time in my like when I suffered from sickle cell the most. So, I’m, it’s now that it doesn’t affect me, but back then, you know, it was much worse than what it is now.

Yeah, they have helped me but not a lot. They’ve, basically, the time of what, the time I was in my GCSEs, before I did my GSCEs in fact, I was in hospital. That was the last time I was in hospital. I was 15 at the time. And I was there for, I think, two weeks, so I didn’t really get to study that much. But they didn’t, they, at that time they never sent nothing for me to revise over, but over the other few years, before I did my GCSEs they were helping quite a lot. And they understood that I had sickle cell and they understood the condition that I, I might be taking off a few days of school. But they were supportive at times, not all the time. And’

And did they send you school work to do?

They would, sometimes. But not all time. Some, most of the time they, there was once a time I was off six weeks and they never sent no work to me, and my mum was really upset about that but apart from that, you know, I had to, once I was better I had to go back into school and I had to do the work that I’d missed, and catch up. So, in a way, you know, they never really helped but they have helped over a few years.

Did your mum do, sort of went to talk to the school when you were not getting the’

Yeah, yeah. My mum once, not, my mum’s been in before to talk to them about what, you know, that situation and other family members they also went in, to talk, because they wanted to help me with what, you know, what had come out of it. But, I mean, they spoke to the head teacher and everything, they explained what I was, you know, that I, they explained that I was in hospital and everything and they said that they would send work and they didn’t, at the end of the day they never sent my work. But, you know. I had to just come back and do the work and catch up.

Yeah. Things like my mum is always on me because you know me I don’t like taking medicine, medication. My mum’s always reminding and it’s something that I can actually go without. I can go without medication but just to stay safe I take it. So I could stop my penicillin and folic acid for a year or so. But then things might start to get worse so I just take it to be safe. So I mean that’s one.

So you forget to take your medication or?

Sometimes yeah I forget like it’s something that I don’t really like. I don’t push myself to do because at the same time even though I should but it’s not something that because like I said because sickle cell it doesn’t really affects me that much now and just a little. But ‘

So I could actually go without medicine. But I just choose to take it just to be safe. So I just take just so just to avoid having a crisis or something. But my mum always you know persuades me to take my medicine just to be safe.