Barbara's Volunteer Story

I've been joined by Barbara, who's a, um, talk and support group volunteer, um, at one of our groups. And she's been volunteering with epilepsy action for over 27 years. Hi, Barbara. Hello

Hi. So I just wanted to know, um What, um, made you start becoming being a volunteer in the first place? Well, I've I've had, uh, epilepsy since I was age 10. So that's many, many years ago

And, um, it was just partial seizures for many, many years, and I got a few tonic, chronic seizures When I was late. Teenager and I found that everything I wanted to do work higher education, et cetera. People said No, no, you can't do that if you have epilepsy

No, no, no. Um, And when I actually got a higher education and I got a job and I had Children when I had Children, my epilepsy got very, very bad. And we had to actually have in living health

It was so bad. But I had nobody to talk to about epilepsy. I didn't know of any groups or anything

And so when it started to improve, I mean, I still have seizures even now, but I thought I want to help other people so that they know that it isn't all bleak. They can have a a life, a decent life with epilepsy. And so that's what motivated me to start volunteering

Yeah, that's a very positive reason for volunteering. And obviously, as I said, you've been volunteering with us for a long time. So what kind of keeps you, um, you know, motivated to keep volunteering for such a long time? Well, before years ago, when people used to ring me up to want to come which you were allowed to then, um, to come to the group, they used to say to me, and they still say to me when they come to the group, this is the first time we talk to anybody with epilepsy and they find it a real It makes such a difference in their lives

It really it really does. And they always say, Where would I be without this? And this is the highlight of my months and met friends and et cetera. And that's what keeps me volunteering like that

I know that I'm helping others and trying to be positive to say you can do things and not Can't can't can't have you found. And this your positive attitude that is making a difference to the people in your group. Are they kind of taking on that positive message? Yes, it's making a big difference

Huge difference every time anyone says, uh, something negative, I, I encourage them to think of something positive. And it it has made a huge difference. The fact that I have epilepsy, I've had to go through the problems that they've had

But somehow you mustn't think life is all bleak. You've got to make the most of what you have and you can have a good life with epilepsy. Yeah, sounds like you're making AAA difference to others

Do you find that volunteering makes a difference to you? Well, over the years, I've learned a lot about epilepsy. All I knew was about my epilepsy. And hardly anything about that actually used to go and see the consultant Put me on different medication

How many seizures have you had? OK, goodbye. I've been to conferences, I've read a lot and I've learned a huge amount from, um be it from volunteering. And so, yes, it has made a huge difference to me

Do you think then that volunteering helps to raise awareness of epilepsy? Yes. Without a doubt, it really, really does. In so many ways

All my friends know I have epilepsy. They've very, very rarely seen me have a seizure. And they know I, um, volunteer with this group

And so they've learned a lot about what a support group, epilepsy support group does, what its purpose is, how it helps people and that they're not, You know that they can lead a very good life. And they they've learned a lot about different sorts of seizure because I didn't know that there were so many different types of seizure. And so I think it's helped raise awareness about epilepsy

And I think that telling people that you have epilepsy is the main way, actually, of educating people and changing a stigma because people have said to me in the past, you don't look as if you have epilepsy. What? What am I meant to look like? And I have this fixed idea of if you if you look in inverted commas normal, then you can't possibly have epilepsy. And I really do think, think that that helps um, with the stigma, it really does

People are educated, more educated now, um, with me and me telling them about my epilepsy, and so I, I think that helps hugely. Thank you very much. Barbara, it's been great to talk to you today and hear your story and thank you for all the, um, amazing volunteer work that you do, um, and help to raise awareness about epilepsy

So it's a pleasure. Thank you. It really is

It's a pleasure. And anything that brings epilepsy into the highlight or anything is a big plus. Yeah

Great message. Thank you. Thank you

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