Helen - Interview 07
More about me...
Helen is 23 and works as a full-time broadcast assistant. She has had simple and complex partial seizures for most of her life but only got the diagnosis 14 months before the interview. Her first memories of seizures are from when she was a teenager but Helen said she didn't tell anybody about her seizures for years as she had no idea what was happening and she was afraid people thinking she was 'going a bit crazy'.
The diagnosis was a relief in the end and Helen says she feels much happier about herself now that she knows what was wrong all these years. However, Helen says it is difficult to accept being classified as disabled and dealing with people's misconceptions and lack of knowledge of epilepsy. She says she still has a lot of questions about her epilepsy and that it still will take a long time for her to come to terms with having it. At the moment Helen is on lamotrigine and her seizures are reasonably well controlled.
Helen has also suffered from depression and raises the issue of being on both anti-depressive medication and AED at the same time. She said that having experienced seizures for a long time, and not knowing what they were, made her a very quiet and introverted child, and 'write bad poetry'. Since, she has found the National Society for Epilepsy webforum extremely supportive and full of 'amazing people' answering her questions and never judging her.
She says it is tricky to know how to deal with mentioning epilepsy in job applications. In job interviews, she always emphasises how she has learnt to plan things carefully and become very organised and in this way turn her epilepsy into a positive thing!
Helen says it's hard to know when to tell people about her epilepsy. She's 'afraid' of getting...
Helen says it's hard to know when to tell people about her epilepsy. She's 'afraid' of getting...
So getting the balance right, when to tell and if you do tell, is it gonna scare them when you don't yourself know them maybe?
I think it's changed the way that I think about relationships with people and I think the reason that I'd rather be friends with someone now before going out with them, is that I've kind of tested them, because you know at a certain point in my friendship with people it does come out. It just comes out, why don't I drive? Why don't I drink? I tell them and if I've known for a while then they have kind of passed the test, so I then I don't mind going out with them. I've got much less to lose. So it has changed the way that I get involved in relationships a great deal and probably for the better. I think. You know it means that I'm lot more picky. But it is good.
Helen did really well in her university studies but couldn't pass the exams because of her memory...
Helen did really well in her university studies but couldn't pass the exams because of her memory...
Helen describes a complex partial seizure she had at the fruit counter of the supermarket.
Helen describes a complex partial seizure she had at the fruit counter of the supermarket.
For Helen having an EEG was 'not a bad experience'.
For Helen having an EEG was 'not a bad experience'.
For Helen having an MRI was 'quite a scary' experience but she jokes that at least now she has...
For Helen having an MRI was 'quite a scary' experience but she jokes that at least now she has...
I don't how I remembered that, but I did. So if you have any metal in there at all it gets completely dragged in, so it's very important to take off all the metal that you have on your body. And then I lay there and actually I'm not gonna lie the MRI was quite, it was quite scary. Mainly because you're kind of trapped in a small space like a little doughnut hole and I'm quite a big lady as well, so I was little bit scared about being stuffed into this little doughnut whole. Then you get all these weird noises as the machinery kind of whirs around your head and you hear grinding noises and it's quite, quite loud. And they are quite nice with you, the thing is your head is clamped in and you're supposed to try not to move it. The moment they say that you are moving your head, you are shaking your head, because you know that you're supposed to be moving it. And they play you radio through headphones that you get. The thing is that you can take a CD and that's my top tip for MRI scans is take a CD of music that you want to listen to and music that will calm you down, because I forgot and I had to listen to commercial radio and it was awful [laughs]. It was really bad. And I couldn't hear the words of the presenters because it was so loud and I had to listen to really, really dreadful pop music. Which I do not like. So my top tip for MRI scans is definitely take a mixed CD or mixed tape of all your favourite music.
Helen experienced complex partial seizures 'all her life' but didn't want to tell anyone and ...
Helen experienced complex partial seizures 'all her life' but didn't want to tell anyone and ...
Problem is that they're, as I said, very hard to describe and my mum, whenever I told my mum about them, she was worried, she thought that maybe I was a bit crazy because people don't really see that side of epilepsy. When they think epilepsy they think of you kind of, you know they think of the stereotypical epileptic fit, the convulsive fit. Someone falling to the ground, the old spoon in the mouth thing [laugh], which is not actually a good idea and you know people blacking out. They don't think that you might be able to be awake and when they see you having a complex partial seizure they just think you've kind of gone a bit dopey in the head, that you're just being stupid or that you're just not paying attention and so they don't understand what you're going through. So when I described these things to my mum and my family they just thought maybe I was going a bit crazy and they told me not to tell anyone. Because I had depression as well they were worried that that was to do with that and maybe I was just going a bit loopy in the head. So I never told anyone.
Helen says people have many misconceptions about epilepsy and don't know about it in the way they...
Helen says people have many misconceptions about epilepsy and don't know about it in the way they...
Helen is wary of antidepressants; she had bad experiences on them and says there are better ways...
Helen is wary of antidepressants; she had bad experiences on them and says there are better ways...
Oh yes. I've been on antidepressants three times [laughs]. I've only ever taken them for a week because all of those times one of my friends found out or saw them. Because I didn't see any need to tell people about it. In fact I saw depression as something to be extremely ashamed of, most people do. And when my friends found them or when I told someone, you know just mentioned it, they made me throw them away because it was Prozac and you know there is a lot about Prozac. One of my relatives got very much addicted to it and it ruined years of her life, she had to go into rehab and things and it's a very strong drug. I took it once for a week and the whole week that I took it I was fine and then I came off it, and I wasn't on a strong dose, I was just building up and stuff, and the week afterwards I don't remember at all. I just cannot remember it at all. Apparently I just floated around wearing really bizarre clothes and saying things that didn't make sense. I think I was quite happy but I don't remember it and that's probably not a good thing [laughs]. So I mean antidepressants and me, not a good relationship and I don't think. I know they help a lot of people but I don't think they are necessarily a good thing to take and I think that there are things that can help you deal with depression better, like having supportive family and seeing professionals, talking about how you feel, having counselling and hot chocolate, lots of hot chocolate and books [laughs].
Helen says forums are great because they're always available. She can ask anything and not feel...
Helen says forums are great because they're always available. She can ask anything and not feel...
It's good for me because it's always there for a start. I don't need to travel. I don't need to go out of my way. I can just log on and there's a whole network of people and you become kind of friends with them and they have outings and things. I mean I don't think that my epilepsy is something that affects me on such a day to day basis I need to use it as much as I did when I first found out. But I think it's good because, as well you know, people don't always like to talk about their epilepsy but on the forum they feel they can. There's that anonymity behind it. They know that you know if people search, if people Google their name on the internet they wouldn't necessarily find them on the forum. And because I'm quite happy to talk about my epilepsy, I want everyone to know about it because it's better then no one knowing and it's better than rumours going round and me not being in control of what people know about my epilepsy. I'd rather lay it all out on the table, explain to people, be as open as I could and you know even if it went to the extreme of having maybe a little leaflet, "Hi I'm Helen. I have epilepsy." It actually would be much easier. But I know that not everyone is as happy as me to talk about their epilepsy and so things like the forum is fantastic and also if you've first got epilepsy or if you don't know if you've it, if you're in the mid-stages of diagnosis maybe you don't want to label yourself on one of the internets having epilepsy so you can just log on and you can have your own little name and it doesn't matter who you really are. It's great and people will just be nice to you. They won't judge you. It's great.