Lara - Long term health conditions
Age at interview: 24
Age at diagnosis: 17
Brief outline: Lara is a full time student nurse and lives in shared accommodation with three other young people. She has just recently moved out of the family home. Ethnic background/nationality' White.
Background: Lara was diagnosed with myoclonic juvenile epilepsy when she was 17 years old. She became depressed and lost her confidence after diagnosis but she wasn't offered counselling. Her nurse has provided her with lots of support. Nowadays she jokes about her epilepsy giving it derogatory names and says that it is one way of coping with it. She has no problem in telling others about her epilepsy.
Audio & video
- Age at interview:
- Age at diagnosis:
- Lara is a full time student nurse and lives in shared accommodation with three other young people. She has just recently moved out of the family home. Ethnic background/nationality' White.
But I, one thing I find really annoying when you go and see consultants is that they read you your history. And I'm like, 'Why are you reading this to me? I know. It's my life. I've lived it' you know. And they go through every like medical thing that happened in my life. And because I was a twin, and my twin died, like the fact that they'd always tell me that I found really strange, because it didn't seem relevant. They were like, 'Yes, so you were born prematurely. You were one of twins. Your twin died. Da-da-da. You had your first this here' you know. And it just, that has always bugged me about going to see the doctor, because I don't want to hear it really. Like it just seems a bit pointless. I feel like, 'Can you not read that, and then call me into your little funny room and ask me how I'm feeling?' Which I do find, like sometimes I do find what they ask you a bit like, like they say, 'How's your epilepsy?' Like I think that's a really weird question to ask. But I suppose there's no other way of putting it. Or just like, 'How are you? How have you been coping?' I suppose.
And I, the new consultant, I've only met her once. And they often like seem like they're in a bit of a rush. Which is quite annoying. Like because you don't really feel like, because often, it's often after I leave that I think of something that I want to ask them. And then like, 'Oh, God, I'm going to have to wait for another six months before I go and see them again'. And the, who's the other one that I saw? The epilepsy nurse. And I didn't go to see her the first few, like I don't remember being, going to see her initially when I first got diagnosed. And actually that would have been the most helpful. Because out of all of them she has been the nicest person. And I found her the most helpful because she's much more chatty and like she just chats to you. And you end up, she ends up finding things out and being like, 'Oh, well, you could do this'. Or, because like I wanted to go onto the pill. And with a lot of epilepsy medications you can't go onto certain pills and, because some of them don't work or they're contradict, yes, you know what I mean, they don't, they just don't work together.
They clash with your medication.
Yes. And that, she was really helpful with that and finding me the right pill to go on and stuff. She was really good at talking to me about that, and also more recently talking to me about if I ever wanted to get pregnant.
And if you have any questions, can you contact your nurse?
Yes, yes. Now I can. I only saw, but I only started seeing the nurse probably four, four years ago I think it was when I first saw her. And she's been really helpful actually. And when I was having all my problems with getting employed because of my epilepsy, I spoke to her quite a lot. And I used to phone her up and ask her what, I mean because she was a nurse as well, and she said, when I told her that I wanted to go into nursing, she said, 'That's brilliant. Go for it. You know, don't let it, you know, don't let this stop you'. And she, but I found the epilepsy nurse really helpful. I thought she, out of everyone she's been probably the most sort of honest and upfront and like just kind about it as well.
Like doctors sometimes can be quite clinical about things and sort of forget that you're a human being, and just see you as a condition rather than thinking about how your life is. That would probably be my biggest criticism of the consultants that I've seen is that a lot of the time they see you as your illness and not as your person. Which I suppose is really difficult for them because they see hundreds of people all the time. And, yo
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