Domini's Volunteer Story

I've been joined by Domini, um, who has been volunteering with epilepsy action for eight months. Hi. Hi. How are you doing? I'm good

Thank you. Hi. Yeah, great

Well, what I'd like to know is what motivated you to start volunteering in the first place? Um, I'd say what motivated me was obviously having epilepsy myself growing up. Um, my parents weren't really told much about it, so we didn't really know how to manage my condition. So I just went out through life knowing I had a condition, sort of knew how it affected me, but couldn't ever remember the name and just cracked on basically, and as growing up, I never really came into contact with people with epilepsy

But everyone always had, like, asthma or diabetes or something like that, which everyone sort of knew how to manage, but epilepsy. No one really spoke about it. And then I come to realise that people were afraid because of the stigma attached to it

So yeah, and I noticed my brother didn't like speaking on my behalf about it. He thought I'd be embarrassed. And I was like, No, I want people to know, like I

I don't know enough about it. I'd like to other people's experience. It's a whole share of mine

So, yeah, I've volunteered for epilepsy, actually. Cos I wanted more people to feel confident, to speak up and, like, move the stigma that is attached to it and not be ashamed of their condition. Because the more that is known, the more that can be done to help everyone living with epilepsy

Not just those with the condition, but those members of the public as well, supporting us as well. Oh, that's great. So so do you think have you been finding that, um, that's been making a diff? You know, the volunteering is making a difference to how people perceive epilepsy

And like, what do you think? Volunteering in general, um, makes a difference. Yeah, I yeah, um definitely feel like since volunteering, it makes a difference. It not only helps those who aim to help, it's also helping myself and understand my condition a bit better

Which there's obviously there's so much to learn about the condition and still being learned. Um, you you're not gonna know everything. Every day is a learning curve

So hearing other people speak about it working with those, Um um, with my fellow colleagues and members of the panel as well find about their personal experiences and then even saying to me that Oh, they wasn't confident enough. But hearing me speak has made them feel confident to share more than what they was before. So, yeah, I definitely feel like when you volunteer, it makes a massive impact for everyone just to speak about it and learn from it

Right. So following on from that, um, it sounds like you've had a positive experience of volunteering. So would you recommend volunteering to others? And are there any particular reasons why you would recommend it? Yeah, I'd definitely say, um, 100% volunteer

I've done other voluntary roles myself, but love an epilepsy action because obviously it hits home a bit more. Um, but yeah, definitely go for it. Because I feel like it just opens up your eyes, Um, about the condition

Um, what you think you know is not necessarily correct. It's not just the condition that causes just seizures and you'll find it's not It's not that at all. Everyone has different seizure types

Different recovery times. Um, how it can really affect them. Um, not just short term, but long term, maybe forevermore, um, it can even cut your life short

So go out and volunteer spread the word because the more people that know how to recognise the signs and symptoms of the condition, the more you can help your fellow public members out there when you're I don't know whether you're walking to work on the bus because some people will ignore these moments and they will just start on for you. So if yeah, crack on volunteer, learn what you can, it will definitely probably hit home for everyone. You don't have to have the conditions for it to hit home

It may just open up your eyes and think, Oh, do you know what I would? I would want to learn more about this condition or a another condition and do more to help people that are struggling because there's not enough people speaking up for these people that are scared to speak about what condition they have. So the more, um, volunteers we have, the more we can spread the awareness and give the support to those that are struggling in silence. Well, thank you very much for that

Domini. It's great that you shared your story with me, and it's really positive to hear how it's making a difference to you. And, um, you know, it's making

It's gonna make a difference to, you know, people living with epilepsy as well. Um, other people living with epilepsy, So thank you very much. Thanks

Thank you..