Rosie: Hi and welcome to the “I’ve Got This: Owning My Epilepsy” podcast series. My name’s Rosie and I’m here with Professor Ingrid Scheffer. Today’s episode is “Let It Go”, where we explore owning your epilepsy and helping your parents let it go. My name is Rosie. I’m 22 and I’m from Melbourne. I was diagnosed with epilepsy ten years ago and have absence seizures.

Ingrid: My name’s Professor Ingrid Scheffer. I’m an epilepsy specialist. I’m a pediatric and adult epileptologist, which means I’m a specialist neurologist who works almost entirely in epilepsy.

Rosie: What I struggled with the most was my Mum. She cared but she just would talk so much in the appointment with my neurologist, so it was really helpful. But sometimes my neurologist would be trying to talk to me, and Mum would just like keep talking. So I wanted the neurologist to talk to me.

Ingrid: So that’s a really good point. And one of the things that I do is try and take young adults on their own first and that few years from 17 to about 21 is very different for different families. Every family is different. And I’ll walk out there and I’ll look at you and I’ll go, Rosie, would you like to come in?

And then I’ll say to the Mum, I said to Rosie, actually, would you rather Mum came with you or Dad, or would you rather they sit outside, then we’ll get them in a moment? And it’s really interesting because then the young person will say no it’s good if Mum comes and then one day they’ll go, no, it’s okay, Mum can wait out, we’ll get them in in a moment.

And then I find that I’m really managing the parental anxiety, and in the end, I get them towards the end of the consultation and then I say, well we’ve had a good chat and things are going well. What questions do you have? And slowly but surely we get the parents to start staying outside and eventually the young person comes on their own.

Rosie: My parents were pretty good, probably because even if they weren’t at the appointment, I ended up still telling them what was said because I like them knowing. But I did say kind of, no, you don’t need to come. I can get here by myself, or I’m coming here with my sister instead. So they knew that I could get there they weren’t there, and they were okay with not being in the room with me, but because they sort of knew they’d get a recap later that night of what was said and if something important happened, then they would know. Or I could ask them to come in if we wanted them to come in.

Ingrid: I think that’s a really important point, and communicating back to your parents helps their anxiety, and we know they’re anxious. Suddenly they’re letting their most precious person in the world go out on their own with this disease called epilepsy, and they’re at risk of being hurt or something going wrong, and they’re terrified. So in a way, as a young adult, if you can manage your parent’s anxiety simply by good communication, go home, tell them what they said.

Don’t just say, oh, I said nothing because that doesn’t help the parents feel like they’re in the loop and it’s about managing them to let go.

Rosie: Exactly. And I did find it really helpful that when I was in the adult system, my neurologist talked to me. So even if my Mum was in the room with me, they do treat you like an adult. And that does help maybe your parents realise that they’re not the patient, you’re the patient. And a great neurologist I think will talk to you and ask you questions and you’re the primary person, and they will talk to your parents, but only if it’s necessary and they will treat you like an adult.

So I did enjoy that about the adult system.

Ingrid: Yeah, I think that’s so important. I think as pediatric neurologists, they’re used to the whole family, and they’re usually engaging the parents, and one of the things I love about pediatrics is that you go from looking after a baby to an adolescent to an adult, because you’ve got the parents in the room all at once. But I think it really shifts and it has to be about the adult with their neurologist relationship and that is different.

And managing their adolescence is quite a skill and also very important.

Rosie: If one of your patients, you know, was 21 and they didn’t want their parents to come in, but their parents were so adamant that they did want to come in, how do you sort of deal with that situation or what advice would you give to the kids and the parents to sort of make it an easy transition or not awkward, but to show that your patient is and is an adult?

Ingrid: Important question. I would control the interaction. So I would say to the parents, no, I need you to sit out here for a moment. I’ll get you in in a moment. I just want to talk to Rosie on her own. Ah, and then when we have the conversation, a lot of the parents in the 18 to 20 year old group are a bit confronted by that.

You know… how dare this neurologist not take me in with my baby! And then you have the conversation with the young adult, and then you say to them, is there anything else? And they say, no. And then I say, well, okay, get Mum or Dad, and then I’ll often send them out to get Mum and Dad. And then they come in, and I go oh things are going, and just do a very short summary like things are going well.

I don’t say anything of the private conversation, and then I give them time to tell me what they want to ask me. But you can see they’re ruffled and it takes a few consultations and then they get in the groove, and they’re usually used to bringing the young person to the consultation. And then eventually the young person says, oh, now I’ll take the train myself, I’ll get there myself.

And you can see the shift. But the big challenge here is that everyone’s different. Every age is different for different families, and you have to manage it, right, for that family.

Rosie: Yeah, definitely.

Ingrid: One issue is that parents can be too involved in their adult child’s life and the adult child doesn’t like it at all. And this is usually because the parents are very anxious that something will go wrong, that their child will have a seizure in the wrong place or stop being able to drive. And that’s very hard to prevent.

Sometimes the adult patient just has to have it go wrong and realise that unless they own their epilepsy, they will have seizures, they won’t be able to drive, or they won’t be able to do what they want to do. And that’s part of maturing and growing up, and the best parents in the world can’t necessarily stop that from happening.

And it is scary and it’s hard to give parents clear advice about it, except that sometimes they need to learn about how to manage their anxiety, even though it puts their child at risk.

Rosie: So why do you think parents find it hard to let it go?

Ingrid: I think one’s got to understand it from the parent’s perspective. They’ve looked after their child for the last 18 to 20 years. They love them to the moon and back, and they’re really anxious about their epilepsy, and they’re anxious they won’t take their drugs, they’re anxious they’ll run out of drugs, they’re anxious they’ll have a seizure, they’re anxious that will affect their ability to work and to drive and to live life.

So one of the issues is recognizing the parents’ anxiety, which is, has been, very appropriate but now needs to shift. And maybe the parent themselves needs to talk to someone about how they can help to let it go and let their adult child grow up and own their own epilepsy.

Rosie: Do you ever seem to find that parents are too involved? And how do you handle that situation?

Ingrid: Yeah, sometimes I do. Sometimes all the messages about the adult child will be from the Mum or the Dad, usually the Mum. And I think that often relates to the Mum’s anxiety. And at some stage I have to say I can’t take calls from you anymore. I have to take it from the patient. And some parents absolutely resent that.

I think I’ve had this relationship with you for a long time, or even if it’s a short time and I care, and I’m the most responsible person around, and then you have to say, well, legally, I’m not allowed to speak to you because your adult child is their own person and every discussion about them should be with them.

And so that often takes some quite gentle discussion. But sometimes one has to be firm and just say, look I’m sorry, I can’t talk to you any more about this if you want, if you’re worried, you get your adult child to call me, and I’ll talk to them about their health and their medicine.

So Rosie how did you show your parents that you were capable of managing your epilepsy?

Rosie: I showed them, I think, through the fact that I was getting my scripts, so I would, pick up the medication myself and that I would realise it’s been, you know, ten months. I should probably book the appointment soon, or I need to get a medical report from VicRoads, which was often something that had to happen quite periodically. But I kind of showed it’s about taking that initiative I think gave them peace of mind that, okay, you know, she knows that she’s got epilepsy and that she has to do these things.

And obviously I ask them for help sometimes because I had to, you know, you can’t do it all yourself. But showing them that, no, I’ve been, I pick up my medication myself or I know it’s time to go see my doctor. That gives them confidence. And I think, you know, it gives them a reason. Or you can say, no, I do this.

So like, let me do it. Let me go. Like I’ve shown you that I’m responsible and that I can do this. And for me, that was you know, that should be enough of a reason to kind of let them, like, let you go. But definitely, I still ask them for help, but just not for every appointment, you know, only if they need to.

And I think that’s like an okay level of involvement. If my epilepsy was bad at bad points, then of course, I might want them there. But yeah, it’s about showing them that I can do it and that I’ve done it in the past.

Ingrid: And then they could step back a bit.

Rosie: Yeah, definitely 

Thanks for listening! Don’t forget to share and subscribe, so you can catch our next episode, “You’ve Got This!,” Where Rosie, James, Ingrid, and Kaitlyn wrap up the series!

This podcast has been produced by Lateral Connections with support from Eisai Australia. The information in this podcast is General in Nature and not intended to replace the advice of health care professionals. Please see your healthcare professional for any specific advice.