Finding Your Voice: A Teen’s Perspective on Serious Illness

When a teen has a serious illness, it can be hard to know how to help. Teens often want to do more on their own as they grow. Caregivers may wonder how to talk with their teen. They may also want to know how to include teens in care choices and help them handle hard feelings.

In this episode, Erica Sirrine, PhD, LCSW, talks with St. Jude patient Michelle and Tori Hinton, PhD, CCLS, senior child life specialist at St. Jude Children’s Research Hospital. They share ways family caregivers can help teens during a serious illness. 

Michelle discusses what she learned during treatment for acute myeloid leukemia, or AML. She talks about how her family communicated, made care choices together, and handled difficult emotions. She also shares how art, journaling, calming exercises, and support from friends helped her manage stress and stay connected to who she is.

Tori explains why giving teens a chance to take part in care decisions matters. She shares ways caregivers can support a teen’s independence while staying connected. The group also explores how to talk honestly, handle stress, and help teens feel heard. 

A special thank you to our host, Erica Sirrine, director of Social Work at St. Jude; our expert, Tori Hinton, senior child life specialist at St. Jude; and St. Jude patient Michelle.

This episode was recorded on August 3, 2026.  

Learn more about Michelle’s AML diagnosis on St. Jude Care & Treatment and Together by St. Jude™.  

Read about Michelle’s art on the St. Jude website.  

Learn about navigating serious illness as a teen or young adult on Together Teens & 20s. 

St. Jude does not endorse any product or organization mentioned in this podcast.

Episode Transcript

Tori (19:27 – 20:59) 
Yeah, absolutely. I mean, I think you hit on something so important that everyone is trying to figure this out, most often for the first time. Individually, much less doing it together as a family unit. So everybody really is just doing their best. And I think I said that at the beginning. I think most people are doing everything with the best of intentions. But, you know, intention and impact isn’t always the same.  

I was working with a family recently, and they have been here for a few years now. And they were really we were taking just taking a walk around the unit, just chatting with this patient and his caregiver. And they were reflecting on something very similar to what Michelle was reflecting on. They really were both trying to protect each other and not put the burden of each other’s feelings on each other. But when they were able to have their own psychosocial support sessions with providers and then have some together as well, they really learned what each other needed.  

One really needed really preferred more avoidant coping techniques and one preferred more reflective coping techniques. And they were able to match those together eventually and work together as a family unit. So, I think we often think, too, that like people’s coping techniques have to be the same to work together. And they don’t. We just have to know what they are so we can help each other. So I think that’s an important piece as well. 

Erica (20:59 – 21:36) 
Yeah. And you mentioned sort of that individualistic nature of the ways that everybody copes differently. That reminds me of something that Michelle said early on when you were introducing yourself. You talked about who you were outside of your illness. And I wonder if some of those factors play in to how we also cope with the emotions. I wonder, Michelle, could you talk a little bit more about identity outside of illness? And maybe even some of the coping strategies that you used to help you process all of the emotions that you were feeling while you were in treatment? 

Michelle (21:36 – 25:04) 
Yeah, of course. So for myself, actually, I want to talk a little bit more about how I find my identity outside of treatment. So at first, when I was first diagnosed, it’s kind of like a big shift for my life because I turned from like a full-time student to kind of like a full-time patient. And a lot of times I feel a bit lost. So I just resort to the art world. I do a lot of drawing. But at that time, I feel like the drawing, it’s just a temporary escape from my present life. I just kind of want to hide myself from my full-time patient identity.  

And I wasn’t interested in doing anything that I like, for example, picking a good outfit today or just those things made… like I lost interest in doing all those things. But later on, when I came here and I met some other patients and they really made a big impact on me, I saw them like drawing and art space. And I talked with them. I just… something just struck me that made me feel like they were enjoying their art, not because they use art as an escape for their cancer. Absolutely, art can be an escape. But at that time, they were enjoying art because they love art. And that’s the thing that brings them joy. It’s nothing to do with their treatment and cancer.  

So at that moment, I felt like cancer is really just part of my life, not all of my life. So from that day on, I started to… even though I’m just coming to the hospital for some transfusion, I will pick an outfit that I like and just started to rediscover myself outside of treatment.  

And I think that kind of links to my coping skills during the process. As I mentioned, I really love to do art. So art and also journaling was my one of my coping strategies. I use them to express my emotions and also build connections with others.  

And also another thing I want to mention as a coping strategy is the mindfulness exercise. It has been really helpful for me because it allowed me to just process my emotions without judging them.  

For example, I will imagine myself lying next to a stream and then writing down all my emotions in my mind and on a leaf and seeing the leaf flowing away on the stream and not judging them. So that helped me really like process my emotions without being overwhelmed by them.  

And also personally, I sometimes talk with my friends, and also I am very grateful for the Psychology service. I found sometimes I found talking with others that can help me kind of recognize some of my thought patterns. And if that thought pattern isn’t really helpful for me, I will try to cope with that. So that is like my personal coping activities.  

But I also talked with my peers who some of them found talking with other people not helpful. So, I do think that this is kind of really personalized.

Erica (25:04 – 26:33)
And you also mentioned, again, illness, cancer was one very small part of your life. And you really illustrated something that we’ve talked a lot about on this podcast, which is integrating the illness and treatment into our ongoing lives, that it is OK and that many days we might feel both grief and hope or loss and pain, but also moments of joy and love in those days. And I think that it’s the “both and,” right. Both of those things can be true at the same time. And it sounds like you found a way to integrate that beautifully during your treatment.  

We hear sometimes—and I want to make sure we mention this because this is something I hear a lot from teenagers—is that maybe the adults in their lives, their parents or their caregivers, will parent them differently when they’re in treatment. I hear teenagers say things like I used to have so much independence. You just mentioned that you were at school. And I think I know that that was a boarding school from our prior conversations. And so, you know, then I’ve heard teenagers say, I feel like they’re hovering now. My parents are around me all the time. I don’t have the same independence. Did you experience any differences in parenting, or have you heard of other teens experiencing some of this? 

Michelle (26:33 – 29:35)
Yes, I think as for my parents, definitely they paid more attention to my health and healthy life habits, like drinking enough water, going to bed earlier, reducing screen time, those healthy life habits. And my parents were also really paying attention to my emotional health, I guess.  

So during my treatment, I can feel that they try to be more careful about what they say in our conversations and trying to not hurt my feelings, which I really appreciated doing so. And regarding independence, I think independence is… I personally really feel that it’s such an important topic during treatment for teenagers or emerging adults because this period of time is really a time that I guess most people want independence or start to explore independence and their self-identity. But in this period of time, most of us became more dependent on our caregivers because of our physical health conditions and all that stuff.  

So for how my parents dealt with that, I think they were trying to give me independence by allowing me to be more engaged in my treatment. For example, when we were having appointments, my parents, they speak Mandarin. So we will have telehealth there so that my parents can communicate with the doctors. But even when the telehealth was there, my parents will ask my opinions and sometimes I will be able to translate again for them about what the doctor said.  

So although now looking back, my parents, they didn’t really need me translating because the telehealth was there, but they still gave me the choice to do so. And this now I think this was them recognizing my independence, and I’m really grateful for that because their recognition told me that independence is not only about physical independence; it’s really about mental independence.  

So even sometimes as teenagers in treatment, we might need to depend on our caregivers and doctors and nurses physically. We can try to develop our mental independence and become more responsible for ourselves as we navigate this period of time where we kind of lost our independence, but we actually still have a chance to regain our independence. 

Erica (29:35 – 30:00)
Tori, can you elaborate a little bit on why it’s important for adolescents to begin to engage with the health care system in independent ways? Because there may be caregivers listening who say, I hear that. That’s wonderful. Michelle was so mature. Her parents let her make that decision. But why is it important for all teens to begin to navigate the health care system in an independent way? 

Tori (30:00 – 31:56)
Absolutely. So we’ve talked a lot about identity, and that is a key point of adolescent development. So during adolescence, teens are starting to think about, you know, they’re starting to do things like figure out their own style, like Michelle was talking about earlier. But they’re also figuring out their value set for their life. They’re figuring they’re navigating social relationships and peer relationships and romantic relationships and all of these things that are starting to become really important to them as they’re growing up.  

And our hope is that they are going to be able to live healthy lives after treatment, too. So we want to prepare our patients, our adolescents for life after treatment and illness. So I think that is one of the biggest reasons to hit on why it is so important to really promote that independence and autonomy throughout the treatment trajectory as well.  

I also want to add, since I know our audience is predominantly parents and caregivers, that it is really important to take time for yourself, too, because if you are a caregiver, your cup needs to be filled to take care of your, you know, the patient that that you are taking care of. So I think Michelle hit on a good point to the juxtaposition of teens being in this independent stage of their lives and then an illness throwing them back into a little bit more of a dependent stage and needing their caregiver more. But caregivers also need to take care of themselves.  

So things like taking a break from the room and going on a walk or working out or going to eat a healthy meal and taking care of your own body as a caregiver, while also fostering that time of independence for a teen in their room. You can do both of those at the same time and hold space for both of those. So then when you are in caregiving role, you have more to bring to the table and are really able to do that well. 

Erica (31:56 – 32:28)
I love that. So by caring for themselves, they are actually helping foster independence for their teen and caring for their teen in that way, too. So caring for yourself is almost an act of love. Absolutely.  

Let’s as we’re coming kind of to a close, I’m wondering about this idea of love. You’ve mentioned it a lot. I can tell, Michelle, that you felt very loved and cared for and supported by your parents while you were in treatment. Can you tell us a little bit about what they did to make you feel most loved and supported? 

Michelle (32:28 – 34:55)
Yes, I really felt my parents and just my caregivers, they love me so much. For example, my dad, when I was first diagnosed and the doctor told him that I had kind of like a high-risk gene fusion, he started just researching every night, not sleeping, just reading all the medical research papers about my type of leukemia, although his job has nothing to do with medical stuff. And he really kind of became an expert in that. And he also spent a lot of time to research about treatment options and clinical trials across the globe. So I’m really grateful for his support.  

As for my mom, I think she really gave herself, gave herself gave her everything in this process. Because at that time, I feel like everyone was kind of emotionally drained and stressed during the treatment, especially during transplant. Everyone was just really stressed. And at that time, I think my emotional state was just not really stable and I had some emotional breakdowns. My mom, she was a very different person compared to me. So for me, I kind of tend to overthink a lot. I have a lot of thoughts going on in mind. But my mom, she’s kind of just straightforward and more goal oriented.  

So I feel like before my diagnosis, we kind of have more arguments about our personalities and she just couldn’t understand lots of my thoughts. But during the process of taking care of me, despite how much stress she was bearing, she tried her very best to understand all my emotions and just give space for me to accept any emotions I have. She was just continuously reaffirming me that no matter how broken I felt, she was there with me, and she would just wait for me patiently and accept any form of me. So that I think that is really, really a wonderful representation of her love towards me. And I’m really, really grateful for that. 

Erica (34:55 – 35:31)
The mutual respect and acceptance, even for the ways, as Tori mentioned earlier, that people might cope differently, express emotions differently, that by being respectful of each other, that in many ways is an act of love and of support.  

We have some teenagers or caregivers listening today who might have just been diagnosed. They may be at the hospital right now. They’ve just come across this podcast. Maybe they’re starting treatment soon. As we close, Michelle, what advice would you share for those who are just beginning their journey? 

Michelle (35:31 – 38:35)
I will share several suggestions from my personal perspective. First is, I think, just to leave space for each other, because especially I think, especially at the start of diagnosis, we really react differently, as we mentioned previously. So I think it’s just really important to give each other, to give the patient and also the caregiver a space to process their own emotions and give time and space. But also at the same time, just remember that no matter how differently we cope, we are all loving each other and heading towards the same goal. Just keep this in mind in the first chaotic stage.  

And also, secondly, I will give a, this is like a suggestion to the caregivers, I guess, just as Dr. Tori had just mentioned, to give some time for self-care. I think that is so important. It’s OK that you watch TV while you take, like after you take care of your child. It’s OK to have some time with friends outside of the hospital. Just taking care of yourself and being at a good or at least not too worse mental state, because looking back, I really hope that my parents, they had more grace on themselves. I’m really grateful for what they’ve done for me, but I really hope that they had more grace on themselves.  

And lastly, I just want to tell all like teenage patients who are navigating through this experience is that you are not alone, although sometimes you may feel like you’re missing out at school. All your friends are going through all the wonderful activities at school or heading off to college and you’re stuck in this hospital. You may feel lonely.  

But just remember that you are never alone. You are so loved by so many people around you, your family or your caregivers or just some people… maybe you never really notice them, but they are supporting you in the best ways they can in some ways that you cannot see.  

And although sometimes you might feel like you are missing out at this time, to me personally, I think I gained so much that I’ve never imagined at the start of my treatment. I had a closer relationships with my with my parents. I had a better understanding of my life direction and all that stuff. So these might be the hidden blessings in this hard journey. So just I think it’s OK to have any emotions you have. It’s OK to feel left out. It’s OK to feel sad and angry. But just remember that you’re stronger than you have imagined. And sometimes life will give you surprise. 

Erica (38:35 – 39:30)
Wow. You’re never alone. I think what you shared is what so many people need to hear, not just adolescents who are diagnosed with cancer. But I think all of us need to hear that sometimes. And I really appreciate you sharing that with our audience. You, I think I can speak for everyone. Not only have you inspired me, but I think your insights have inspired everybody who will listen to this episode. And I am extraordinarily grateful that you were willing to share with us today. Thank you for courageously sharing your story, your vulnerability. Thank you, Tori, for sharing your insights and expertise. And to our listeners, thank you for allowing us to walk alongside you as you navigate this really complex journey. Thank you so much for being here today. 

Michelle (39:30 – 39:33)
Thank you. Thank you for having me. 

Narrator (39:33 – 40:28)
Thank you for listening to Caregivers SHARE, a podcast lovingly brought to you by Patient Family-Centered Care and Psychosocial Services at St. Jude Children’s Research Hospital.   

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This podcast is for informational purposes only and does not render medical advice or professional services. This podcast does not establish a patient relationship between the listener and St. Jude Children’s Research Hospital. The opinions expressed belong to the caregivers. Your personal experience may differ. If you have questions about individual health concerns, psychosocial needs, or specific treatment options, please discuss them with your child’s medical team.    

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