Alexis Snyder, a parent of a teenager with chronic complex health issues since birth, shares her journey. She speaks about accepting what is, helping her daughter prepare to manage the many transitions in medical care from infancy to adulthood, the challenges of a siloed medical system, and a fear of losing control of her daughter’s health as she let’s go of responsibility. Loving, determined, vulnerable. The third interview in a series on Young Adults with Complex Conditions Transitioning from Pediatric to Adults Medical Care.
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Previously in series
Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer
Generosity by the Snyder family
About the Show
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats, and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel. Let’s make some sense of all this.
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Episode introduction 00:00
Hey there, blog readers and podcast listeners. I’m having a serious blast expanding my craft of communication with you about empowering people as they travel together toward best health. Adding the medium of sound has been a stretch for me while tapping my creative juices. I’m testing various ways to blend written, oral and sound experiences while telling stories and advocating for us, people at the center of care. I’ve published the first two interviews about young adults with complex conditions transitioning from pediatric to adult medical care. I got on to this topic while attending a PCORI Advisory Panel (Patient Centered Outcomes Research Institute). A fellow panel member, Kate Houghton, effectively advocated for funding research into the challenges of young adults transitioning from pediatric to adult care. Turns out I know young adults, parents, and clinicians who are willing to be interviewed. Voila, the series has begun. We started with Jill Woodworth, a mom of three young adults with complex conditions. Here’s a 30 second clip from that podcast. I just had asked about the journey of increasing autonomy for her children. She’s talking about one son.
Jill Woodworth: And then my son, he will be able to do a lot for himself. But again, it’ll be very slow. Yeah, he’s cognitively the most affected. I’m very hopeful because he’s made great progress once we got that piece, kind of, I don’t stay under control because there’s always challenges. But he’s learning. Like I taught him to get his own meds, you know, it’s kind of meeting each one of them where they are and what they can do. So, but it’s hard.
Health Hats: Oh, yes. My hat’s off.
Jill Woodworth: Oh, thank you. Yeah, you know, I don’t. I wouldn’t do anything else, but it may it really motivates me to try to understand.
The second was with Sara Snyder, a 16-year-old, transitioning herself. Here’s a clip of Sara. She’s giving some advice to other young adults.
Sara Snyder: You know your body the best so if someone comes along and disagrees or like challenges what you’re saying you feel just to have patience and just like put yourself first and don’t start doubting yourself or feeling like you’re not being taken care of.
I have links to the full podcasts in the show notes. Today, we’ll be talking with Alexis Snyder, Sara’s mom, to hear her take on their path. I’m learning the technology and story development as I go. I’ve appreciated many of your comments and suggestions. I’ve heard from longtime blog followers and new podcast listeners. Keep that feedback coming. OK. Here’s the podcast.
Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, white man with privilege, living in a food oasis, who can afford many hats, and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in healthcare’s Tower of Babel. Let’s make some sense of all this.
Health Hats: Hi Alexis, thanks for joining me. I really appreciate it. Can you just tell me a little bit about yourself?
Alexis: So, I am a parent of a now teenager, with chronic complex health issues since birth. I also happen to be patient advocate and family advisor and a patient engagement specialist. So, there’s the fortunate end of me that understands a little bit more about the health system than perhaps some other parents. But my role to speak to you today is primarily about a parent of a teenager transitioning to the healthcare system on her own.
Health Hats: Where were you when you first realized that health was fragile?
Alexis: So, I think that that’s a really interesting question that I’ve actually given a lot of thought to. And I would say that off the top of my head most people would equate health and fragile health or realizing when health is fragile with experiencing loss or serious illness, etc. For me, I think, I don’t think I’ve ever taken a step back and thought about life being fragile more than or more so thinking of life as being a series of challenges. Or at times an uphill battle, unfortunately. And I think when you’re then dealing with any type of serious illness or chronic illness, whether it be yourself or a loved one or a friend or even if you work in the healthcare field, I think then it becomes more about that also just being another challenge in life. And I think for me, even having dealt with personal loss and unexpected loss of my father, and multiple miscarriages and now having a child who’s lived her whole life with chronic illness, I still don’t think I’ve ever stopped and thought about wow, life is really fragile. I think I’ve always thought of it in a mind frame. Okay, this is something that we’ve been hit with and how do we best cope? And how do we best deal and get through the system positively.
Health Hats: Wow, that’s inspiring. Really inspiring. So, what does what does healthy look like to you?
Alexis: That’s a good question, too. Right? So, I think the word healthy can mean a lot of things, right? I think off again off the top of the cuff for some people healthy is, you know eating right and being the right weight, so to speak and exercising and certainly to your average physician at a well visit. That’s what healthy looks like. I think for me and for my family in terms of healthy is living the best life that you can. What is your own baseline of healthy? What does that personally mean for you? And I think even when you’re say in the terms of the health system, you’re an unhealthy person or you’re above average health or not as great as healthy as the next person. I think the word healthy still means what is your personal best and that we’re all going to be in a different place
Health Hats: That’s interesting. You think a lot about your daughter’s health and helping her navigate. One of the things, that seems to me being a parent, is that it’s draining and at times it can be really lonely. It inevitably those things inevitably affect your health. What do you think of that? And how have you managed it? Because when we spent some time together. You seem so matter-of-fact and you just take it as it comes. And like you just said about healthy and about, you know fragility, you know, just you know accept what is and move on.
Alexis: I think I have multiple answers for you. And so, you might have to back up and ask me some of those questions again because my answer kind of changed as I was listening to you. And I think for me that part of that it’s nice to hear that perhaps I sound put together and managing it well and matter of fact, as you were saying. I think that’s more of a coping mechanism. I think it’s more denial. I think it’s a safety mechanism that my brain tells me – well, this is what we’re dealing with. Let’s try to deal with it as best we can and try to move forward as best we can. I think if I really stop and think about it, I might have another perspective. but I think the other half of that answer is this is something that we’ve dealt with in terms of my child’s health since she was born. And I don’t think that we think of it in terms of knowing anything different. She’s our only child. This has been with her since day one and it’s all we know. And a lot of people over the years have actually said to me things like, oh wow like, how do you how do you deal with that? It must be so difficult to have a child who sick often in order to deal with chronic illness or deal with the battles with school and with the health care system. I think for me and to speak for my husband as well. I think it’s all we know. I don’t think I know a different life and so I’ve learned how to just live through it. And I think my third answer to that would be that I haven’t been without my own health issues in the healthcare system, but I think and I still battle with some of my own not as serious as my daughter. And so, I think you know when she came along with all her issues that took front and center and so anything that kind of when you talk about my own health and it’s taking a toll on your own health. I think a lot of my own health took a back burner, so to speak, to making sure that my child lives the best life that she does and gets the best health care that she can get. And I know and I think managing that that stress piece it’s always stressful. But again, I think it’s a stress that I don’t know any different. If that makes sense.
Health Hats: It does make sense. For me, I’m a pathologically optimistic person. Sort of what you’re describing but I do have my 2 a.m. terrors, where I have my little freak outs and woe is me and boy, this really sucks.
Alexis: We all do
Health Hats: Yeah. And I think that one of the things you and I bond over is that we’re part of a community. And I feel like, while it is lonely to be, sometimes it’s your own life and you got to deal with it. And if you’re fortunate like we are that we have families and support systems and a roof and all of that. Still, having this community of people who get it is very helpful.
Alexis: Yes. Well, I would say I have on both ends a lot of people who get it. And a lot of people who don’t get it. And I laugh when you say, that I sound optimistic. I would never describe myself as an optimistic person. I think I hope for the best which I guess hope can be equated with optimism. But I think if you asked me on a regular given day or any day, you know, are you an optimist or pessimist? I’d probably say I’m somewhere in in between and fall toward the pessimistic side, even though I might sound kind of matter of fact and optimistic about things and I definitely have those 2 a.m. moments where my mind doesn’t stop. We’ve talked about this and not being able to sleep and whether that be thinking about my child’s health or my health or what’s on the table for me the next day or whatever it be. Or a conflict that happened earlier in the day. I have a very difficult time turning off my mind. I think that when you ask me, how does it take a toll on my own health? I think for me the stress and anxiety piece. I think that was always there to begin with a little bit for me. That’s me. That’s my personality and what I deal with. But I think definitely having a child who has struggled with complex chronic health issues and the healthcare system and having to you know battle for her, so to speak, on a regular basis and so many different areas. That’s the piece that takes the most toll on me. I think.
Health Hats: You sound pretty deliberate when it comes to Sara and managing her. We’re going to deal with this, one foot in front of the other. Recognizing that inside there’s other stuff going on. I interviewed Sara last week and she’s eloquent. I guess what really interests me in this vein. Like I feel like we could talk about so many different things. But in this particular vein you’ve thought quite a bit about your role as a parent and now she’s entering adulthood and there’s a transition to make. How is it that you help her go forward? So, how have you been thinking about that? What’s worked?
Alexis: I would back up for a minute and I would say that when I think about the transition process, I think that in Sara’s now 16, so she’s quite not fully there at 18 or 21, 25. I think that like I mentioned before about life being a challenge. I think that there’s multiple transitions in life. I think even when we speak about childhood and chronic illness and dealing with the health care system and becoming an adult, this isn’t the first transition. The more that I thought about it. I thought, you know, her whole life has been a transition with the healthcare system. So, you’re an infant and you’re born with chronic illness and everything’s done for you and to you and you don’t know what’s going on. You become a toddler. You started having some more visits and interactions with the Healthcare System. You start thinking, oh, okay. Well, this is what doctors are for they’re here to help but I’m not quite sure why I’m here. Right? Then there’s the transition in early childhood where you really start thinking? Oh, yes, we have an appointment. I’m going to the hospital. This is why I’m going. To start learning about who you are and how you define yourself to other people and explain your illness and how to identify with it and have others understand. And then there’s this transition process probably between 12 and 14, which is just as big, I think, a transition is transitioning into adulthood in terms of the medical system where there’s this real shift. And physicians speaking to the parent or the caregiver and getting all the information from the parent or the caregiver to looking over to now the preteen or teenager and asking them, well, what do you think? You tell me what’s going on. How can I best help you? What’s your most important complaint on the table today? Wow, what’s the one thing I could help you with? And I think that that transition first is good preparation when done right with the providers who do that for moving forward to the transition into adulthood. But I would also say, and I’ll be more than happy to tell you more about what we trying to do into the adult transition. That that piece of doctors wanting to try to help the transition early on and getting the child to speak and advocate more for themselves is one, helpful. But also, there seems to be this immediate shift of we’re going to go from your caregiver doing everything for you to now it’s on you and there’s no slow in between. And if there was one piece, I would change then and change moving forward into adulthood would be that there’s no ease in the process, if that makes sense.
Health Hats: Oh, yeah,
Alexis: It’s very much. No, no, wait mom don’t speak. I want to hear it from your child. Which is good. But we have sat in probably more than one appointment where we’ve had that happen and my daughter trying to learn how to advocate for herself and how to express what she’s feeling and her needs medically. Let alone going through adolescence, right, and how just growing up. There’s a huge transition there. Trying to do that while living with chronic illness and having a doctor all of a sudden say, well you tell me, and I don’t want to hear it from anybody else. There’s always that deer caught in headlights look. And that look over what Mom did I get it right? Did I get it all out? Can you help me out? And there’s this piece of physicians who were then look back over at your child and you and say, well how come they can’t do it themselves. Are you coaching them? Does this medical problem actually exist? Are you over exaggerating? So, I think it’s very interesting that on the one hand the health system is wanting you to grow up and mature and advocate for yourself. But wanting you to get there immediately with no help. So it’s like a double-edged sword on the one hand, you know, go cold turkey. It’s all it’s all on you now, but to get some help with that process and look over your caregiver and ask for help in expressing yourself. Is then on the other hand. Oh well, this must be over medicalizing or why can’t you transition this on your own but there really is no transition I guess is what I’m trying to say. It’s a giant jump from one roll to the other.
Health Hats: So interesting. Well, you’ve really opened my eyes there. I mean, I think we were walking in DC and you were telling me about being in the car going to an appointment and having a conversation about what do we want to accomplish in this visit? From that snippet of a conversation, I felt like, that’s where I got the being somewhat deliberate about the transition – trying to prepare. Did that happen? Like after it was clear like you were in a sort of suspended animation of jumping over a cliff, and it’s oh goodness? You know what I’m saying? It’s like it’s it seems like it all happens in such fits and starts. What I’m hearing you say is it’s not smooth and sometimes you’re trying to oh my this happened next time we better do a little more preparation. Or something like that.
Alexis: That’s definitely what it is. Okay even call it deliberation. I think it’s reactive to challenges that we’ve probably encountered in the healthcare system and that lack of ease of transition process. So, I think like I had started to talk about before I think a lot of it came from not thinking about the transition process and always being used to being the voice and the advocate and the one this is what’s going on. This is what happened yesterday. This is what happened, is what we need next time. To that that shift of providers trying to for a good reason involve Sara more and have her kind of expressing what was going on for her? And so I think that deliberate piece for me came from appointments that not, sometimes didn’t go so well because she hadn’t been thinking about it because she’s so used to someone else thinking about it for her and doing for her. That shift of how do we do together and with and that for and move forward so she can express herself. And so, I think a lot of time she felt put on the spot, so to speak, when she was asked a question. And again, that deer in headlights look. Like oh, I didn’t know I was going to have to answer that today and then it not being able necessarily answer it well enough to convey what was happening medically for her even to this day at 16 It’s sometimes difficult to go to an appointment together and a physician asked her what her chief complaint is? Or what’s been going well what hasn’t been going so well? Or even a simple question of how are you how have you been feeling over the past three months? And sometimes she could have a lot going on that hasn’t been going well, and we need to talk about medication changes etc. And she’ll sit there and say I’m good. I’m fine.
Health Hats: Yeah, and you know the backstory
Alexis: Exactly, and so there’s that fine line of how much do you help advocate? And get that out. So, then the physician saying well you’re doing too much and why isn’t she answering? Yeah, and so I think that’s the deliberate piece. I think we’ve had a lot of interactions with the healthcare system that went that way because we hadn’t stepped back and thought about it. To now like you said our conversation about, either night before an appointment or a couple nights before or in the car and the way there reviewing it again. Like okay well you want to make sure you tell your doctor what happened last week? Oh, yeah, I forgot about that. Or don’t you remember what happened with that new medication? Did you want to talk about that? Oh, you’re right, yes. And trying to shift from me making those lists. We need to accomplish X,Y & Z at this appointment. To her trying to remember those things because the unfortunate truth is I won’t always be there.
Health Hats: Yeah. I’m in my 60s and I wear all these different hats and I have all this experience. When I go to the doctor, I’m kind of surprised how ill-prepared and young I feel. And I leave and I think the same thing. Like, oh my God, I totally forgot to whatever and I get home and I’m trying to tell my wife what happened. In the middle of the night. I’ll think. Oh, this is this totally big thing happened and I totally forgot about it at the appointment, right? So, it’s partially a young adult transition thing and partially just a person trying to manage thing.
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Health Hats: Thinking about, not so much about you and Sara, but the systems that you’re living in. You talked about the sensitivity of multiple gradual transitions. What else do you think the systems around you, the medical, healthcare, financial systems around you. Where do you think more work needs to be done to be supportive and helpful to young people transitioning?
Alexis: I think the first answer to that is that the healthcare system isn’t always so empathetic no matter what age you are. And I think that the players in the healthcare system needs to remember that, again, life is a transition. It’s not so black and white the transition process from adolescence to young adulthood or young adulthood to adulthood. There’s no definitive time period. And I think the health system to organize itself needs a cut off. They need a definitive period of time. Not everybody matures at the same rate. Not everybody is ready at 18 to take on a larger role. Some aren’t ready till 25. Some people aren’t ready to 30. Some people are ready at 15 and I think that the Health Care System needs to be more forgiving of realizing that there’s different personalities and different maturity rates. And figure out how to best ease that process and figure out when folks are ready. What do they need more help with? And going back to the healthcare system not always being an empathetic place, I think one of the big challenges I think going from childhood in the healthcare system to adulthood and everything in between is that we already have a system that isn’t always empathetic. And I think when we’re dealing with children in the Healthcare System, there’s not an empathy. There’s more of a sympathy. There’s more of all this poor child or oh, how can we help them just cope and get through and be a kid. We want them to be a kid and I think it’s more sympathetic and then all of a sudden you’ll grow up and you’re forced into a system that isn’t so empathetic for adults to begin with and you’ve gone from having hopefully having had supports in place as a child to learn how to cope and deal and move on. And all of a sudden, you’re grown up and all the supports get taken away from you. And you’re supposed to fend for yourself in a not so empathetic environment. I think the Healthcare System needs to take a step back In many areas as you know, but in terms of transitioning into adulthood and healthcare system remembering that it’s not easy. Putting more steps into place putting more supports in place helping with referrals from a pediatric specialist to an adult specialist. Improving that communication process. I mean look that’s you know, as well as I know, dealing with your own health issues and family members that physicians and healthcare systems work in silos, and it’s very difficult to get them to speak to each other. So, we have a team of wonderful specialists. It’s hard to get them to speak to each other. It’s hard to get them to work together as good as a team as we built over the years. Now imagine trying to get a whole new team of people to talk to each other in an adult system. So, it’s hard enough to transition within one system. Let alone. Okay. Now this neurologist needs to speak with my new adult neurologist. So, there’s really not a lot in place for the transition process. And just stepping back and looking at what needs to be dealt with and finding the baby steps to get there and knowing that not everyone’s going to get there at the same rate or pace is probably the biggest first step.
Health Hats: Wow. You know, I’m feeling overwhelming sadness and overwhelming excitement, at the same time. Which is the state of affairs. There’s so much good stuff out there. You find team members that are unexpectedly helpful, valuable relationships. That’s so gratifying and can just take the load off. And then on the other hand it’s such a grind. Yes, and it’s like a never-ending grind. Anyway, what I what haven’t I asked you about this that is important to you.
Alexis: You asked me a lot of wonderful things. I would say I think an important piece to mention that we had talked about in the past. You asked me kind of how it affects my health or how I cope as a parent. I think an important piece worth mentioning is the fear of giving up for lack of a better way to put it that control. Yeah of trying to you know being the one in charge of keeping your child as well as you can. We’re keeping them at least at their healthy baseline whatever that healthy is for them and giving up the control and letting them and or somebody else kind of battle it out. I think that there’s a big fear of losing that control. Trying to get my thoughts together. There’s a big learning curve. In adolescents and then young adulthood when somebody else has been helping you manage your life. Right? Right, just like the school is kind of prepare you to move from elementary to middle school or middle school to high school. There’s nobody there but your caregivers. And hopefully you have cared caregivers to help you transition through the healthcare system. And when somebody has always been there to kind of help you balance your life so to speak, right, staying hydrated. How much activity do you do or not do because you want to go to a party that night? Or it’s a school night and you have an exam the next day making the choices of what you can or can’t do the evening before when someone else is always helping you manage that is very difficult to teach them to do that on their own and I think for me as a parent the hardest piece of that – two fold the hardest the hardest pieces are one giving up that control and I think if my husband were listening to me, he laughs right now. Because that’s probably my personality in general giving up control, and not micromanaging somebody else’s life. She needs to learn how to figure these pieces out for herself. But so, one, giving up the control but two, letting her fail. Because you can’t learn that right without failure. Yeah, and obviously look at her look at any adult trying to do today right illness or not. Yeah, but letting your child fail at anything is difficult. Right? Teaching them to ride a bike and letting go and letting them fall on the floor, right, is difficult. But when we talk about managing your health. That’s a scarier piece it is because I think how can I let you fail and maybe you go to the ER and the next day because of it or it’s difficult. It’s really, it’s really difficult. Yeah. Thanks. Yeah. All right. We’ll talk to you soon. Likewise. Yes. All right. Bye.
There’s a mother who loves her daughter! I learned from Alexis that there isn’t one transition for young adults and their parents or guardians. There’s many. In different flavors and different paces over their lives. Start transitioning now, where ever now is. Sounds like parenting to me. The next episode will be an interview with Sara and Alexis together. Here’s a clip:
Sara: I think like in the moment it was annoying because on whenever we have to go on field trips, she would come so that she could help me and make sure that I’m not getting too hot too cold and making sure that I’m conserving my energy, but then now looking back on that because I had a pretty terrible field trip in middle school that ended with me crying and being very excluded from the rest of the group. I think that was when I was oh well if my mom wasn’t here right now, like what would actually be happening and be even worse. So now that I look back, I’m kind of thankful that she was always there but like in the moment I was like God, why are you here? I’m trying to be with my friends.
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