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Epilepsy

Anxiety and depression with epilepsy

Many of the people we interviewed reported feeling anxious and depressed because of their epilepsy. Some had these feelings when they were first diagnosed. Others explained how they felt down or depressed at different stages.

 

Explains how he feels depressed at different times.

Explains how he feels depressed at different times.

Age at interview: 31
Sex: Male
Age at diagnosis: 12
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I get a lot of admiration from people who say that you know 'I really cope with life well,' but at the end of the day my job does not inspire me. The, I shouldn't think the medication helps but I just find it all like, whilst I'm not saying that I suppress it, I really try and be as positive as possible. But then I suddenly find every now and then I will really get down because you know, and a bit depressed because it just sort of builds up on top of you.

Have you ever thought about having some counselling or life coaching, that kind of thing?

Not really no. I've certainly been thinking about, I mean I've been a bit sort of, things have got on top of me for the last couple of weeks, because I've had a couple of weeks off which is just more rest and recuperation, a couple of visits up to London and things. And then you come back to work and you think, this is a dead end job, you know I've got nothing to look forward to, I've not got a holiday planned, sort of life goes on 

But I think those actual sort of, you know the problems, I do sometimes feel a little bit bitter but, like I say, there are other people who have far greater problems. At least I'm able bodied, I think I do try and look on the positive side of life. But like I said I'm a bit like a pressure cooker you know, I just, every now and then I just sink a bit low - sort of more like a culmination of things. 

Often, feelings of depression were bound up with a sense of hopelessness and powerlessness. One woman described her feelings of depression, anger and loss of control. Another discussed her feelings of depression and failure. She also recalled the support she'd had from her church group.

 

Discusses her feelings of depression, anger and loss of control.

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Discusses her feelings of depression, anger and loss of control.

Age at interview: 27
Sex: Female
Age at diagnosis: 26
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Mostly I did feel depressed all the time but mostly during the time when I'm gonna have a fit or after I've had a fit I feel really, really depressed. And I feel like I want to die, I don't want to live any more. I cry a lot and I have lots of arguments with my husband! (laughs). I feel irritated all the time and I keep screaming and shouting at everyone, irritated. I just get irritated with anything, even with my children. And oh yeah I haven't mentioned before um, my anger, my anger has intensified more. Its more, I get angry really quickly and furious with anything. I can't control my anger now, if I get angry, now it's more under control but initially my anger was like so bad I'd do anything or just throw anything, or I'd just bang my hand. I didn't care what I did. If someone irritated me or said something or, I'd go over anything, if it was my son doing something I'd keep on shouting at him all the time and he got scared. And afterwards, after I cooled down I was back to normal. I'd think to myself oh my God why did I shout at my son like that and I'd feel really bad because I couldn't control my anger. 

Yeah, but you feel more controlled now? 

Yeah I think so! (laughs). 

Less angry? 

I feel less angry but my depression I have, there are certain periods in the month I get really depressed but its irregular, it just comes about when I feel like there's no hope for me. I'm not gonna get well and I can't do nothing with my life, I'm stuck at home. And I think all these people are doing this and that and I could have done this, I could have done that, but because of my illness I can't do anything, I'm just stuck at home. I'm an invalid you know, I just feel disabled. I'm a disabled person now, I can't do nothing with my life, that's it, I've got no future. right now I can't control my life, I can't control anything.         

That's how you feel? 

That's how I feel because I have to rely on everybody, I can't do anything by myself.

 

Describes her feelings of depression and failure.

Describes her feelings of depression and failure.

Age at interview: 48
Sex: Female
Age at diagnosis: 10
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Yeah, it's true I've had a fair amount of depression over the years. I think probably beginning after the death of our baby, again. I was helped considerably by the people in the church that I belong to, they were absolutely marvellous. There was always somebody who was willing to listen and to pray for me if that's what I wanted to do. And that has been a terrific support. In fact I'm not sure where I would be without the support of my faith and the people, the family of the church. I've had, I've been up to the Hospital, I've had group therapy, I've had individual therapy. I find it really, really difficult being depressed. 

Can you tell me a bit about how you feel? Do you feel isolated or you know, is it difficult to do anything? 

I feel a failure, I feel a failure because it's such a disappointment every time I have a seizure. I get things going again afterwards, but it takes about a week now to get the courage and the confidence to get back out again and doing things. I know that its not good to stay in the house, I know that from somebody who is suffering from depression that that is the last thing really you want to do and yet I don't feel able to go out and to chat happily with people, just in the street or at the local shop, because I don't feel able to go out.

Talking to other people and joining support groups helped many people we interviewed to deal with their feelings of anxiety and isolation. Some also recommended counselling (see 'Sources of support for people with epilepsy'). Several explained that anti-epileptic drugs can also make people feel depressed.

 

Explains that anti-epileptic drugs can also make people feel depressed.

Explains that anti-epileptic drugs can also make people feel depressed.

Age at interview: 39
Sex: Female
Age at diagnosis: 25
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I was very scared and of course to lose my job as well, very deflated and you know felt a bit like a freak of nature. But I thought no I'm not going to put up with, and although I hadn't worked for them for a year, there was nothing I could do about taking them to a tribunal, but I just sort of tucked myself in, you know, and got on with it you know. 

Did you feel depressed at this stage? 

Very. Very depressed but I think also anyone with epilepsy will tell you the drugs can sometimes be worse than the condition you know. All the side-effects were horrible, especially Sabril, uh no Tegretol was. 

I think the first five years were the worst for me. But then I realised that I was stuck with it as I thought then, I'm going to have to do something about it. So it's probably after about five years, yes. 

Many of those interviewed pointed out that feelings of depression often passed, and discussed how having a positive attitude helped them. One woman discussed her depression and how keeping herself busy and occupied helped.

 

Explains that a positive attitude has helped.

Explains that a positive attitude has helped.

Age at interview: 31
Sex: Male
Age at diagnosis: 12
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But you tend to sort of feel really poor about, feel really low about yourself and sort of think oh you know, I've sort of been dumped on in life you know. 

But when I was in hospital, a couple of beds along was a kid who had been, he was left, he was about 14 or 15 and had been doing a paper round on his bike and got hit by a car. Well obviously in the days when hardly anybody wore a cycle helmet, and he was being sort of fed through a tube and he's sort of since died. Well it slightly puts things into perspective.

...I'd say look at the positive side of it. Don't let it drag you down because it will. If you let it drag you down, it really will drag you down. Like from the times it does, I do find that it just sort of boils over and then I do get a little bit depressed. It can, if you don't look on the positive side, and get on with life and try and get as much out of life, then it really will get you down.  Don't think oh my God I can't drive; oh my God I've got to take all this medication; oh my God I can't do this, I can't do that. And really try and look on the positive side. Don't let it beat you because if, you know, if you just loaf about and be depressed about it then it really will be, you know. You really only have to take a look around you and see that there are people who are in far worse situations. 

 

Discusses her depression and how she keeps herself occupied.

Discusses her depression and how she keeps herself occupied.

Age at interview: 30
Sex: Female
Age at diagnosis: 9
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There is one thing that I would associate with epilepsy is depression. It comes alongside because basically the restrictions, the stigma etc., emotionally is damaging. I personally am on anti depressants. And once you've suffered with it, it reoccurs. 

'I try to cope with the depression by ploughing myself into something, instead of sitting there and thinking. That's the worst thing possible for me and it makes me worse. Because then the subject of 'what if?' comes up. So I seem to find a job to do or find an interest or paperwork etc., whatever, just to keep my mind away from it. 

A few people reported feeling suicidal when times were difficult, but often noted how these feelings passed. One woman, who had had a vagus nerve stimulator (VNS) implanted, discussed her feelings of depression but also how her life had changed after having surgery for epilepsy.

 

Recalls her feelings of depression, and how her life changed after having surgery.

Recalls her feelings of depression, and how her life changed after having surgery.

Age at interview: 52
Sex: Female
Age at diagnosis: 30
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I had got to the stage where I felt 'No, I cannot go on like this'.  I don't think I used to in my earlier days. That's when I was younger, I think that was when my body could take it. With the older, as I've got this little bit older I've just felt 'No, I can't take this'. And it has been suggested on more than one occasion 'I won't take this any longer'. I'm going to give it a couple of more years and if I'm continuing on with it, I hasten to say a tablet or two which I take for my epilepsy would soon say goodbye to me. 

Luckily it didn't get to that. 

No, I'm so glad. 

So your day to day life has changed quite dramatically to how it used to be?  How were your days before compared to now? 

I was going to say very dull [um], dull if you want to call it dull, yes. Just a case of get up, I'd probably might, my day wouldn't start until mid-day because of the way unfortunately my medication was stopping me. So obviously it would be mid-day before I was all together and I was out of my flat. Mid-day if I was lucky, probably two o'clock. 

So are there any other activities that you miss?

Not now because I'm beginning to get my activities back in the respects of yes I can, as I said to you, go to the theatre, go to the cinema. They were all activities that I missed then and you're talking to me now at a point where, OK things are coming back, but coming in my direction again.   

Last reviewed May 2016.
Last updated March 2014.

 
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