The kids aren’t alright - Helping teens navigate a parent’s diagnosis with Headspace psychologist Nicola Palfrey

MS Plus acknowledges the traditional custodians of the land this podcast is recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their Elders past and present.

Jess: Welcome to the MS Boost. Thank you for joining us. My name's Jess, and today we're talking with Nicola Palfrey, who's the head of clinical leadership with Headspace and also a clinical psychologist. So, thank you for joining us, Nicola. Today we're talking about talking to your kids when a parent has a diagnosis of MS, and often there's a lot of support and resources for when you're explaining things to kids who may be a bit younger, but when it comes to teenagers there isn't as much information to navigate this time.

So, Nicola are teens just a little bit tricky during this phase? And if a parent has been diagnosed with MS and They're finding that their teens just won't engage in conversations about this. How do parents navigate this time?

Nicola: Yeah, that's a big question, Jess. Thanks for having me. I think the first thing to say is, are teenagers tricky? Yes, but so are we all. So are toddlers, so are primary school age kids, so are adults. We're all tricky in our own way. I do think teenagers get a bit of a bad rap sometimes and the other side of that is we can be invalidating of their experiences.

So, it is perfectly natural and developmentally appropriate that teenagers do what they do. They take risks, they seek to separate from their origins, so it's actually part of continuing the gene pool is that your attachment figures shift in adolescence away primarily from your caregivers or often your parents towards friends and peers.

So, that kind of separation and testing of boundaries is all developmentally normal and appropriate and necessary. And it makes it quite difficult for families whose dynamics are changing. And so, when you add in something like a diagnosis of MS into a family it's a really big deal, you know, it's a big deal for everybody involved.

And I think when you're talking about how do you have the conversation with a young person who doesn't want to engage, there's obviously no one size fits all because your child, your teen is different. You may have several teens in the house, you may have a range of ages in the household, and it's likely that each of them will respond differently to a diagnosis.

So, I think the first thing is to think about the young person that you're wanting to communicate with. You know them better than anyone else probably. If you're a member of their family, you know what works with them when they engage, when they don't engage. As parents or carers, you have lots of difficult conversations with your children over the years, whether it be the birds and the bees or about family separations or other losses in the family setting boundaries and so forth.

What we tend to do though as adults is we steal ourselves for the conversation and we think about it when we're ready to do it and we lay it on them in one go and we want to get it over and done with because it's a challenging conversation. It's a distressing conversation and that is understandable and not always the best approach.

So, if I were to say how do you go about it, it's to think about your kid and what they're like, when's an environment that you have some time and space but don't expect it to be a one off conversation. Don't set it up to be a one off conversation and maybe just start small. So, start and frame it that there's some news that you want to share, you want to bring them in.

They probably know a lot. They might not know the detail or the specificity of what the diagnosis is, but they will know that something's been going on in their family. Even little ones will know but the vibe of the household will have been influenced by what's going on.

So yeah, I thinking about where you can start and thinking of it as an ongoing conversation is a helpful place to start.

Jess: Absolutely. And I think you're so right. Teenagers know far more than they will ever let on as to what's going on. And, as you said, I could guarantee that it would absolutely notice that there's a slight change, as you said, the vibe in the house. If a teen. is really withdrawn and their parent has maybe tried those few attempts or tried to engage with them.

How long would you consider that normal teen behavior? How long do you sort of give it until you maybe start looking at other avenues for getting them to engage in a conversation?

Nicola: We like finite rules as parents and as adults, and it doesn't really work that way, I don't think. Again, it might sound a bit trite, but it is trusting yourself and also looking for even the small signs. So, if your child at this stage of their life is generally pretty chatty and that's a big change that they have become withdrawn and not speaking at all. That's a different sign than if your child is at that stage of grunts and kind of not quite engaging as much and then that's kind of just continuing if that makes sense. So, it's thinking about where you were starting from and also thinking about okay, if I haven't got there, what have I tried?

What haven't I tried? Often, again, when we get worried about something, we can get defended because you think about the person who's sharing the diagnosis. It's either their diagnosis or a diagnosis of somebody they love. You're impacted as well. So, you’re not probably operating from a space where you're most in control and feeling really level and able to be patient and kind and all of those sorts of things because it's a lot of feelings that everybody's managing. Okay, and it can be really easy to flip from my goodness, I need to tell my child this information and it's going to impact them too. My god why won't you engage in this conversation because your tolerance and patience is being pressed as well because you're coping with the adjustments in the family in the news and the unpredictability of what's coming.

As a child, my mum had MS and the unpredictability of it was difficult to manage as a teenager. It was embarrassing at times, and I didn't want to talk to people about it, even my siblings, because I was the youngest and they weren't embarrassed at the same way I was because when I was 13, they were 20. It's a different developmental stage in age about what it feels like to have a mum in a wheelchair, or all those sorts of things. And you don't feel proud of it, I don't feel proud of it saying it now, but they're hard emotions to manage on your own. So, also bringing in other people to the conversation, somebody who might be slightly removed, whether it's an auntie or a family friend or somebody that knows your child quite well, to check in on them. And I think if you can get some of those data sources triangulate your data, what are they like at home? Are they still going and engaging in their music or sports or other things? How are they going at school? Maybe have a chat to a trusted teacher. And if you start to get a picture that your child is not themselves and you really think that they're struggling in a number of those domains, then you might want to start thinking about.

How you engage in a conversation about further supports.

Jess: That's a really good point. And one thing you mentioned, which sounds like it would be a very understandable response from a teenager, is to be worried, what's my mum or dad going to look like now? How's our family life going to be? Is it going to be affected? Do you think that their thoughts around what MS is going to look like for their family could be a barrier that stops them from opening up to their parents?

Whether they're concerned, they don't want to say, I'm embarrassed, I'm worried that, you're going to look different. Our family's going to be different and we won't look like everyone else.

Nicola: 100%. And I think one of the things that we don't think about a lot is how much young people actually care about their parents or their loved ones. They don't want to let them down or they don't want to hurt them.

It would be a rare child indeed that would think, oh I'm going to say to mum, how embarrassing now you've got this diagnosis. You know, they might be worried about that, but they're never going to say that because that's a hurtful thing to say. And it leaves them to manage it on their own. But absolutely, I think asking questions. We know from a lot of work and research in different areas, when there's stress in the family, whether it be a health diagnosis or natural disasters, for example. In the aftermath, kids don't go to their parents with their worries because they know they're stressed. And so, they might act out and engage in a whole lot of other behaviours, which causes more stress to their parents. It's not to say that it's the best strategy, but what they're trying to be protective. They're trying to think, I don't need one more thing because it's really destabilising to see mum upset or dad upset or they're fighting or they're teary, you know, those sorts of things.

So, kids keep it to themselves and it's not like teenagers are often walking around going, so anyone in your family been diagnosed with a chronic illness lately? Or, you know, they're not having those peer conversations necessarily. So yeah, they can be very alone in the conversations and in the processing and what it means, how fast does it move, like even, my knowledge of how MS is treated and plays out these days is out of date and, you know, I enjoy getting more information about that because the trajectories are very different.

So, the knowledge is not necessarily current and then there'll be a whole lot of questions that they have that they don't know who to ask.

Jess: For sure. Yeah, good point. And so, are there questions that parents could maybe ask their teens that teens are more likely to be responsive to or something that maybe doesn't feel like their being interrogated? What would you recommend parents approach be to try and get them to engage? What sort of questions could they ask?

Nicola: Yeah, and I think sometimes, teenagers often respond better to prompts rather than just open it. How are you feeling? What's going on for you? You know so often in my work therapeutically with young people, you might offer some suggestions about what they might be thinking or feeling. And people have aversion to that, but don't worry, they'll shut you down if you get it wrong. It engages them in the conversation and so you might have a conversation that's around I wonder how you're feeling about this. I wouldn't be surprised if you might be feeling a bit scared or angry that this has happened. And then they might be like, I'm not scared. Like, okay, cool. Well, that's good to know, your angry and feel a bit frustrated by it, whatever it may be, but you can kind of start some curious questioning about how they're feeling. Or if that feels too in the deep end of emotion straight away, you might just say, have you got any questions?

Now, we've had a lot of conversations with doctors. There's a lot of information out there, but do you have any questions about MS and what it means? Or do you have any questions about anything to do with this, or have you chatted to anyone about this? They might be doing a whole lot of support over here. They might be like, oh actually uncle Dave calls me every second day and we have a yarn about this and you're just not in the loop. So, you can be curious about do they think they need to chat to anybody about it? Are they chatting to anybody? How are they feeling about it? And then stop. If you're going down a rabbit hole to nowhere, drop the hot chocolate and leave the room and try again another day, right?

I certainly know I've got teenagers in my household. The mum's here to have a conversation about your feelings and how life is traveling doesn't go down very well. Putting food in front of them and saying, how you going mate while they're watching a TV show or, whatever, and offering a quick what's happening with that? I heard you were a bit concerned about that. Grunt, grunt, whatever it may be, no problem, leave. I know now who will do what. My daughter will open up and my son will come back at some point in the next 24 hours and maybe text me about something or maybe come and have a chat about it when he's feeling okay.

But trying to sit them down and have a now's the time we're talking about this. It doesn't feel great, I don't think. It's kind of on our terms often when it suits us, when we have the window of opportunity. So yeah, different ways to engage, I think, is helpful.

Jess: Yeah, definitely. And I had actually read that, you know, when you're talking to teens or trying to engage with them, is it often better to try and do something at the same time so it's maybe less pressure, as you said, having dinner in front of the TV, that sort of thing.

Nicola: They talk a lot in therapy circles about alongside, right? So, the kind of face to face you think about it's quite intimidating, and some people are super comfortable with that in therapy, Or in day to day living, like coming in and flopping on your child's bed and having a conversation they might be okay with, but there is a lot of evidence that the alongside driving is good because the eye contact is less as well and that can be less intimidating.

So, if you're driving or they're driving and you're having a bit of a chat about how things are going, walking the dog as you say doing something else cooking dinner, just general chit chat. So, set up is important and timing is important. So, I know I used to talk a lot with families with younger kids sometimes if they knew there'd been a lot going on maybe setting up a regular time for one on one with you and that child, something that you enjoy doing, they like doing, whatever it may be.

And you just make it available to them and in that time, it could be 15 minutes. It doesn't have to be a three hour slot. It is the two of you and you your undivided attention and they will make use of it when they're ready. But you're not saying we can have 15 minutes on Friday when we go and get a coffee together and we're going to talk about your feelings.

So, let's go and do this. It might be doing the grocery shopping you have a bit of fun. You tuck something in the trolley that you didn't expect, but you know, that they're favourite. Just little acts of kindness, but also being available for them. They will take it up when they need to with some encouragement.

Jess: Yeah, absolutely. How can parents tell if their teen is really struggling and maybe having more serious mental health issues. So, if you're a parent and you're really worried about your teen, what are some things that you can sort of do to help that process along, try to bribe your teen, almost try to force them to go and see someone.

What's the sort of thoughts around that situation?

Nicola: Yeah, it's a great question. Yeah, and bribing is always an underrated skill, which we reframe it as positive reinforcement in psychological terms.

We can't force a kid to engage in therapy. But it's very rare that a child that has ever turned up at my door for therapy has said I'm here because I really want to be here, you know, I'm here because mum made me come, or those sorts of things. But to that point, again, it's around the engaging in steps along the way.

So, how do you tell if your child needs more significant help? Is tricky, okay, because as I said earlier, adolescence is supposed to be a time of big emotions and feelings and risk taking and, so on and so forth. But if you're concerned that your child is not themselves for a significant period of time and there's all the checklists that you can get out there, but it really is.

They're not engaging in life in the way that they previously used to, for a period of time that you're concerned about, so. And I think some of the metrics are the stuff that they used to really enjoy. So, it might be gaming, so they're not getting online and gaming with their friends even if they've got the permission to do so, or they're really not, doing their sports, playing their instruments, any of those sorts of things.

Now there's, that's tricky too, right, because there's a normal waxing and waning of that in adolescence, but it's a kind of across the board. So, here I'm thinking about depression and anxiety. They're very closely linked. It's quite rare to have one without some flavour of the other, particularly in adolescence.

So particularly worry, getting distraught about things getting withdrawn, those sorts of tendencies that are going on. And I'm always one for honesty, so asking a young person, like, I'm actually a bit worried about you, that you don't see yourself, you haven't for a while, what are you thinking, how are you feeling, do you think everything's going okay?

In terms of help seeking, there's lots of different options and I think what's really helpful to hear is when you say getting help for a young person doesn't mean automatically signing them up for years of therapy, which is what I think the assumption is. There's a whole lot of evidence and benefit of brief interventions.

In fact, the modal, so most common number of times people come to therapy, is once. And that's not because they hated it, the majority of those people say they got something out of it. So, there's a whole of interventions called single session or session at a time, brief intervention therapy. So, I think even having that conversation with young people.

So, even if you did get into the room with a young person and a counsellor or therapist of some shape or form, one or two sessions can often be super helpful in terms of what's going on. And then there's also online supports are free, are available, can be anonymous. Things like Headspace are freely available that kids can call up and talk to somebody about how they're traveling what might be on their mind, what's worrying them work and study options, those sorts of things.

So, there's different mechanisms work well for young people. So, if your child has dropped out of school or is struggling to engage in school, struggling to go to school, for example, can't find a job, is feeling quite down, there's things like work and study support that again, freely available and just kind of one lever can really help.

And then the final thing I think is really important is another space which is under utilized, perhaps we're not spoken about, is the kind of peer space, the peer chat space. And that can be either the kind of lived experience of, living with a family member with MS for example, or more broadly of just being a young person in this day and age.

And in that, those spaces are much more casual for young people. They can dip into, participate or just listen along, but that can shift things as well. So, the validation of thinking actually, I'm not the only young person who's living with this or worried about that, might make you feel less weird.

So, lots of different options that people can educate themselves about and talk to their kids about. And I think that last bit's really important as well. If you can't get your young person to engage, it doesn't mean you can't educate yourself about what supports are available, what might be really helpful and get support for yourself along the way.

So, if you're in a family and you have had a diagnosis of MS or are living with MS and you're worried about your child's mental health, they're all going to intersect with each other. So, looking after yourself as a parent or caregiver is really important as well. And that's really good for your child's mental health.

And then you can go subterfuge sometimes, which is invite them out to walk the dog, which is the intervention to get them out, get some exercise and some vitamin D and so forth. But yeah, different strings, I suppose you can pull at different times.

Jodi: Yeah. Just with that peer support, I've noticed in my teenage boys they actually said I'm talking to my friends about it and I hear some of their conversations and was noticing that how much they, how comfortable they are in talking about mental health issues.

I'm like, yeah, no, I've talked to my friend about my mental health. And I was like, wow, that's much different from when I was a teenager. And so, I was really, heartened to see the opening, how much both of them, different groups of friends, two teenage boys, both of them connected with their mates and were actually having conversations about it.

So, do you think that that's changing?

Nicola: Enormously, yeah. I think it's changed enormously, and I think, so the whole movement for the last two decades or longer around building mental health literacy has worked, right? So yeah, you hear young people, when I was at school, no one talked about mental health.

I remember there was a, that girl over there has an eating disorder. One kid in my memory of four years, you know, we didn't know anything about it. We just thought it was odd because her mum was a nurse. I remember having that conversation, like, how does that work? You know, that's the level of mental health literacy that we had.

And so on one side, you have incredible mental health literacy and people understand a lot more about it and we're making strides in reducing stigma. The other side, one other side of it is we can pathologise. So, as you've talked about, so normal mood, ups and downs or stresses and so forth. We can catastrophize a little bit, so everyone's got a mental health disorder, which is not helpful, I don't think, but I don't think you need to go down that path.

I do think the peer to peer I think the assumptions that they don't talk to each other is wrong, 100 percent wrong. I think it's wonderful that they can get that support and the stigma is reduced.

And similarly, my 18 year old son has had frank conversations with his mates. And I'm like, have you told anyone about this? He's like, I talked to so and so and so. Wow, that's amazing, you know? And got a really positive response. And surprise, surprise, they shared their own experiences and so forth. And the final thing I'll say is, and there's a limit to what friends can offer each other.

So, thinking as we get into more acuity or risk of poor mental health, if young people are feeling that they're not coping at all and they're drawing dust on their friends, the friends need to be supported to know when to activate the next level of help as well. So, yeah, that's just the sobering side to it, I suppose, which is it can, it's fantastic that they have each other and we need to ensure that they feel supported to, it's not dubbing.

If you're really concerned about the safety of one of your friends, that you then involve an adult or another person to share some of that responsibility, because that can be a lot for young people to hold as well, if they're really concerned.

Jess: And so Nicola, I guess my last question would be for the parents who maybe think they feel like they're doing it all wrong and they're sort of at a bit of a loss. What would your one takeaway tip for parents be who dealing with this stage of their diagnosis and dealing with their teens and talking to their teens about it?

Nicola: Nothing surprises a kid more than when we say sorry or admit that we've stuffed up. So, if you think it's gone down the wrong path and it's getting into a space that's really unhelpful for everybody, just own it and say, we're trying to have this conversation with you. It hasn't been going well.

I'm sorry. It feels yuck at the moment. Can we start again? or if you need some help, have a chat to somebody, you know, all of those supports are available for adults as well for your online supports to have a chat. Organisations like MS are available to give that support.

But yeah, I think don't be afraid to think, oh, we're so far down this track that it's, we just need to keep going. Kind of an admission of this hasn't gone well, has it? You know, okay, let's start again. Let's regroup. And that t can be a circuit breaker, you know, all of us when we're just talking about it, you know what, that feels when sometimes you're like, oh my gosh, I'm just going to call it.

This has gone terribly. And then again, you know, that kind of cutting it off and saying, let's try again tomorrow or let's regroup. There's time. We can have these conversations. There's no huge rush. It can be helpful and just taking that pressure off yourself because you're carrying a lot.

I've got to do this and I've got to do that. I've got to let these people know. And because your child's not the only person you need to let know right? You've got a lot of other things. So, you’ve let them know, you've said, I've mucked that up, hasn't gone well and then you can maybe draw on them and advice for other things.

I think that's another thing that we can do is young people feel much better about things and more in control if they have some agency. So, you can say to them, my God, I've got to tell grandma, how do you think I do it? you know what I mean? So, enlist them in actual conversations that matter around your household and make them feel important as they are in the decisions that impact all of you. And I think if you can pivot it to that, which is these are things that we're navigating together.

I'm just telling you what's going to happen that can shift the dynamic in a helpful way as well.

Jess: Absolutely. Those are some really, really great strategies and tips, Nicola, and I'm sure it will be so helpful for so many parents to hear that, there's no one size fits all for every family. And it's something that it sounds like most parents will have difficulty with, you know, it's not a one and done conversation.

It takes multiple attempts and takes time. and listening to your teen and involving them in that process. And as you said, letting them have some sort of agency in what's going on. So, thank you so much again for joining us today. It's greatly appreciated.

Nicola: Thanks very much for having me.

Jess: thanks for listening to the MS Boost. Let us know, what are your thoughts on talking to your teens about your own diagnosis with MS? Tune in next fortnight to the MS Boost.