Parenting with MS: Finding Strength, Joy, and Resilience

Summary

Podcast Summary: MS Living Well – Parenting with MS: Finding Strength, Joy, and Resilience

Date: August 19, 2025
Host: Dr. Jamie Holloman (Missouri Baptist Medical Center)
Guests: Dr. Amy Sullivan (Cleveland Clinic) & Julie Stamm (Author of Some Days)

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Episode Overview

This episode focuses on the unique experiences and challenges faced by parents living with multiple sclerosis (MS). Through expert insights and personal stories, the episode explores the emotional, practical, and communicative aspects of parenting with MS. Listeners hear from Dr. Amy Sullivan, a clinical psychologist specializing in MS, and Julie Stamm, author and MS advocate, who share strategies for navigating guilt, fostering resilience, communicating with children, and finding joy amidst uncertainty.

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Key Discussion Points & Insights

1. Integrating Mental Health in MS Care

• Dr. Amy Sullivan highlights the importance of holistic care at the Cleveland Clinic’s Mellon Center, where mental health is a normalized and integrated part of MS management ([03:14]).
  • Melon offers a variety of support groups: young professionals, caregivers, men’s, human-animal bonding, sleep/fatigue, and a general MS group.
  • Community and relatable support are crucial: “Seeing someone in a similar situation, struggling with the same things… can be really incredibly therapeutic.” – Dr. Holloman ([05:01]).
• Mental health stigma has lessened but addressing emotional needs remains a core component.

2. Common Parenting Challenges with MS

• Guilt is a pervasive emotion for many parents with MS, stemming from the feeling that they can’t meet expectations or be the parent they envisioned ([05:23]).
• Strategies to “readjust your sails” and reframe expectations can lead to deeper purpose and perspective.
  • “You learn more lessons when there’s some choppy waters… Just because you’re not sailing in the same direction doesn’t mean that your life can’t be meaningful and powerful and filled with purpose.” – Dr. Sullivan ([06:44]).

3. Managing Symptoms as a Parent

• No "one-size-fits-all" solution; personalized fatigue management is critical ([07:24]).
  • Energy banking: Plan activities for times of highest energy, and ensure rest for both parent and child.
  • Weekly and daily planning is recommended to “know your body and your energy level” ([08:08]).

4. Talking to Children about MS

• Open, age-appropriate communication is emphasized.
  • Resources like Mommy’s Story and Daddy’s Story are recommended for young kids ([08:52]).
  • Children of parents with MS often develop resilience and empathy.
  • “If we’re raising resilient and empathetic people and kind people in the world, we’re doing something really right.” – Dr. Sullivan ([09:54]).

5. Navigating Expectations & Social Pressures

• Social media can heighten anxiety about “perfect parenting.”
  • “Stay off those sites if they’re causing anxiety... This is your life, and you get one chance to be a parent.” – Dr. Sullivan ([11:20]).

6. Resilience, Gratitude, and Joy

• Practicing gratitude, even for the small moments, can significantly improve well-being.
  • “What a beautiful example we’re setting for our families.” – Dr. Sullivan ([12:27]).
• Apologizing and owning mistakes is part of healthy parenting and models good emotional behavior for children ([11:36]).

7. Family Planning and MS

• Decisions about having children should be made in consultation with medical professionals.
  • Heartwarming story: Two patients found love (and parenthood) after meeting in the infusion room ([13:17]-[14:48]).
  • “My patient would have never met her husband had she not had MS. So I think there’s a little gratitude for MS there.” – Dr. Sullivan ([14:51]).

8. Coping with Relapses

• The “three by three by three rule”: First three weeks post-relapse are hardest; by three months, symptoms and fear move more to the background ([15:32]).
  • “Allow yourself to grieve. Allow yourself those moments of sadness or anxiety… until you get to the point where it’s not all consuming anymore.” – Dr. Sullivan ([16:34]).

9. Final Advice for Parents with MS

• “We get one chance to parent, and so don’t let MS steal that from you.”
• Focus on managing— not letting MS define you ([17:00]).

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Julie Stamm’s Perspective & Personal Story

Writing Some Days and Parenting Openness

• Julie chose radical honesty with her son from birth, believing children are resilient and including them makes MS less scary ([18:49]).
• On inspiration: She wrote nightly letters to her son about good and bad days. Through these discussions, she saw her son’s perspective was often optimistic ([20:11]).
  • “Kids have these wild imaginations… Sometimes it’s literally just cuddling on the couch that’s the most exciting part for them.”

Dealing with Guilt and Modeling Empathy

• Julie’s communication and visibility in her son’s life foster empathy and inclusivity among his classmates ([21:31]).
• "Every parent has guilt… but in spite of MS, our children come out stronger, more resilient. My son is the one that will make sure everyone has food before he does. They are so empathetic and kind.” – Julie Stamm ([22:03]).
• Encourages others not to let MS be the reason to forgo parenthood ([22:15]).

Diagnosis Journey and Chronic Grief

• Seven years to diagnosis; initial symptoms were bladder/bowel issues ([22:32]).
• Julie allows herself "one day to grieve" new losses, but emphasizes adaptation and finding community.
• “With COVID, we all got a little taste of what it’s like to have MS… Ours won’t go away, but we’ll continue to fight and go through it and just adjust and adapt.” ([23:13]).

Facing Uncertainty with Hope

• Julie acknowledges ongoing struggles but maintains optimism for future treatments and a possible cure ([24:05]).
• Advises newly diagnosed to surround themselves with positive influences: “If you Google anything, it’s going to come up with negative stuff. So try and, like, surround yourself with the people that will inspire you to stay hopeful, because there is hope.” ([25:12]).

Conversations with Children: Avoiding Burden

• Transparency helps prevent misconceptions and reduces children’s fear.
  • “If you make it light, it will be light for them. If you make it heavy, it’s going to be a burden.” – Julie Stamm ([26:20]).
• Creativity helps on tough days; children mostly want presence, not perfection ([27:13]).

Community, Empowerment, and Main Messages

• Many children have their own “difference.” Emphasizing pride in difference, not shame ([27:55]).
• “All you have to do is give your children love and support and you’re going to be just fine.” ([28:50]).

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Memorable Quotes & Moments (with Timestamps)

• “You learn more lessons when there’s some choppy waters… your life can still be meaningful and powerful.” – Dr. Sullivan ([06:44])
• “Best thing we can do is teach our kids the same lessons we’re learning.” – Dr. Sullivan ([07:46])
• “If we’re raising resilient and empathetic people and kind people in the world, we’re doing something really right.” – Dr. Sullivan ([09:54])
• “Stay off those sites if they’re causing anxiety… You get to decide what your family looks like.” – Dr. Sullivan ([11:20])
• “I wrote him very open letters on the days that I felt like I failed him as a mom.” – Julie Stamm ([20:11])
• “Every parent has guilt… but in spite of MS, our children come out stronger, more resilient.” – Julie Stamm ([22:03])
• “If you make it light, it will be light for them. If you make it heavy, it’s going to be a burden.” – Julie Stamm ([26:20])
• “All you have to do is give your children love and support and you’re going to be just fine.” – Julie Stamm ([28:50])

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Timestamps for Key Segments

• Introduction & episode theme: [00:05]
• Dr. Amy Sullivan’s role at the Mellon Center: [01:59]–[03:14]
• Mental health resources and support groups: [03:14]–[05:01]
• Parenting challenges: guilt & coping: [05:23]–[07:07]
• Managing fatigue and planning: [07:24]
• Talking to kids about MS: [08:39]–[10:14]
• Advice on social pressures and modeling gratitude: [11:05]–[12:57]
• Family planning with MS: [13:06]–[14:51]
• Dealing with relapses: [15:32]–[16:46]
• Final advice for parents: [17:00]–[17:59]
• Julie Stamm on writing Some Days and open parenting: [18:45]–[20:11]
• Guilt and empathy in parenting with MS: [21:17]–[22:26]
• Diagnosis journey and adapting to change: [22:32]–[23:41]
• Facing uncertainty and fostering hope: [24:05]–[25:26]
• Advice on sharing diagnosis with children: [25:47]–[26:38]
• Adapting parenting style to symptoms: [27:13]–[27:48]
• Empowering children through difference: [27:55]–[28:27]
• Julie’s key advice for parents: [28:37]–[29:01]

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Conclusion

This episode emphasizes that parenting with MS is both possible and rewarding, though challenging. With proper support, open communication, and self-compassion, parents can raise empathetic and resilient children while nurturing their own joy and strength. Both Dr. Sullivan and Julie Stamm highlight the power of perspective, the necessity of community, and the life-changing impact of honest conversation — for families facing MS, hope and connection are always possible.

Transcript

[A]

Hello and welcome Back to the Ms. Living well podcast. I'm Dr. Jamie Holloman, neurologist at the Ms. Center for Innovations in Care at Missouri Baptist Medical center in St. Louis. I'll be your host for today's episode, parenting with Ms. This episode is sponsored by TG Therapeutics. As a new dad, I'm learning all about the ups and downs of parenting. I don't think I've ever been as equally happy and tired as I am right now at any other point in my life. And as my kids grow up, we're constantly facing new adventures each day. At the end of the day, I sometimes find myself thinking, am I doing this right? Are there ways that I could be a better parent and a better father? Well, when you're parenting while living with multiple cirrhosis, these types of questions can take on a whole new level of meaning. Often it means balancing the chaos of parenthood with the ups and downs of a chronic illness. This can be a particularly daunting task. However, from my perspective as a son of a mom with Ms. And from taking care of many parents with ms, I know parenting with Ms. Is full of joy, meaning, and possibility. And that's what we're talking about today, finding that balance while parenting with Ms. In this episode we're you'll hear from Julie Stamm, author of Some Days, whose work has helped families all over the world talk about chronic illness with their children. But first, I'm joined by Dr. Amy Sullivan, a clinical health psychologist and the director of Behavioral medicine at the Mellon center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic. She's an expert in the mental and emotional aspects of multiple sclerosis, and I'm excited for you to hear her perspective. Thanks so much for coming on the podcast, Dr. Sullivan.

[B]

I'm so happy to be here. Thanks so much for inviting me.

[A]

Well, to get started, would you mind telling me what initially got you interested in working with people with ms?

[B]

Oh, sure. So I have no personal connection to Ms. I have a family full of doctors of some sort, people in healthcare, many different family members that are surgeons or dentists or PhD researchers. And I just knew that my purpose was to help others. And to be honest with you, this job is really the perfect job. It's just a wonderful privilege to work with a patient with Ms. These are individuals who just have such a drive. They have grit, they have desire to kind of work the process, to do what they need, to feel emotionally and physically at their top. And especially to work at Mellon center, where I get to work with the brightest minds in Ms. And I know you came from us as well. It's such a special place to be where you're surrounded by people who we all have the same mission, and that is to make the lives of people with Ms. Better. And to me, it's just such a privilege to be there.

[A]

It makes a lot of sense. And thank you for all the work that you do. I love the Mellon model in terms of integrating psychology into the clinic day to day, they sort of have a whole staff of psychologists that can work with patients directly in the center, which makes a huge difference to me.

[B]

I think Mellon has done such a great job of normalizing the mental health journey. It's been something that I've been really proud of implementing there as well. You know, I think if you look 20 years ago, 30 years ago, mental health was very much stigmatized. And the way that Mellon has approached psychology, mental health, behavioral medicine, is that this is a part of your Ms. Journey. This isn't something to be ashamed of. This is something, in fact, that I think only the strongest people attempt to go through. Because it takes a lot of courage to be in our chair, to open up, to be vulnerable, to share with us in our behavioral medicine section. And to your point, we are integrated into almost every aspect of care at Mellon Center. So we have referrals from not only our neurologists and our apps, but also from speech therapy, pt, ot. The research team sends people to us. And then, of course, we have these amazing groups. We have a caregiver support group. We have a young professionals group. We have a men's support group. We have a human animal bonding group. We have a sleep and fatigue group. We have a general Ms. Support group. But the one that I think I wanna focus on a little bit here today as it relates to this topic, is our young professional group. And when we think the young professional group, I think what makes it so special and so popular at Mellon center, when people are usually diagnosed with ms, it's usually during the high of their life. They're partnering up, they're starting really important careers, they're having families. And these are things that are very difficult when you combine it with a chronic disease. And so as long as somebody is in the state of Ohio, individuals are welcome to join this group. And it's virtual. It meets once a month, and it just tends to be a very popular place for people to meet other people with very similar concerns.

[A]

It's a phenomenal resource, and I think it's something too about seeing someone in a similar situation to you, struggling with the same things, kind of creating that commonality and that community feel that can be really incredibly therapeutic for people with Ms. Are there any common challenges around parenting that you've observed coming up in these groups or from talking with people with ms?

[B]

One of the things that I think comes up very frequently for my patients is guilt. So they feel like they're not going to be able to be the parent that they had hoped that they would be. You know, we all have this vision in our head about what it's going to look like for us, right or wrong, when we have a family and how we're going to parent. And I think just learning to kind of readjust the sails of the ship, if you will, and teach them how to navigate and very different waters than maybe they had envisioned. And that's a really beautiful process to work through with somebody, because most everybody comes out in the end saying, gosh, like, I have more purpose and meaning now that I've gone through this process, that I have this chronic disease. This disease does give me more perspective. But, you know, one of the things that we work a lot on is this guilt. So who do I want to be as a parent and am I able to keep up? Fatigue, pain, some mood disorders, the invisible symptoms are things that I think our patients deal with that are really difficult. So these are things that we work on in our practice where we help our patients to gain perspective, to gain coping skills. This is a practice where we focus on what we can do versus what they can't do. And we really work hard to, like I said earlier, really readjust those sails because the ship doesn't have to sail in one direction. You learn more lesson when there's some choppy waters. You're seeing new areas of the world or of life in this analogy. And so I think it's important to recognize that just because you're not sailing in the same direction doesn't mean that your life can't be meaningful and powerful and filled with purpose.

[A]

Let's say maybe a patient who has fatigue or pain kind of reports that those are maybe interfering day to day with the availability that they want to have as a parent or the things that they want to do. Are there specific things that you recommend or ways that you approach those specific challenges?

[B]

Well, I think it's not a one size fits all, so for each person, it would be different. But from our perspective, we have a fatigue management protocol that's very effective. And part of what we teach patients Is that in order to have energy, you have to bank the energy. So it's just like going to a bank, you know, you can't withdraw money if you don't have money in the bank. Right. So when we're talking about parenting, I think one of the best things that we can do is to teach our kids the same lessons that we're learning. So kids also need time to rest, relax and recover. Planning is another important thing. So we talked about rest and recovery, but it's also important to talk about planning. So when we look at planning a day or a week, if we're looking at the day, it's important to say, okay, when do I have the most energy? So this requires, you know, some self introspection to say, okay, over the course of the day, I have the Most energy at 10 o' clock in the morning, let's just say. So then they need to recognize that that's when they want to plan Those activities, not 8 o' clock at night when their energy starts to fade. And the same thing needs to occur over the course of the week. So you probably don't want to do something strenuous every day of the week. You want us to kind of space those out. So a lot of it is planning and just knowing your body and your energy level as well.

[A]

Have there been any specific unique things that maybe came up from the children's perspective, having a parent with ms, of maybe unique things that parents have reported dealing with or things that they've had to talk with their children about?

[B]

Well, I will say one of my favorite books is a book from MSA which is called Mommy's Story and Daddy's Story. I'm not sure if you're aware of those. This is probably for younger children. I'd say, you know, like 4 to 10, you can download them from MSA's website. But it kind of talks a little bit about what Ms. May look like for mommy or Daddy. And this is a good way to get started with having a conversation with your child. But I always say that parents know your children best and it's important for them to figure out how their child's going to take it, how they want to approach it with their child. And if they need help, there's behavioral medicine services. We can always offer those sessions to talk with the family together and process their thoughts and feelings related to multiple sclerosis. Just making sure that the parents are on the same page and making sure that it's age appropriate for the child. I will say too, that there's a lot of literature and parenting with a chronic disease and in particular parenting with multiple sclerosis. And a lot of the research shows that people with Ms. Who parent children, their children become very empathetic individuals. They become very resilient. If we're raising resilient and empathetic people and kind people in the world, we're doing something really right.

[A]

That makes a lot of sense and it's, it's incredibly encouraging because I hear from parents a lot with ms, you know, what will the impact be long term for my, my kids, what this is going to mean for my family? And so there's a lot of reassurance there from that data and from my perspective, I grew up with a mom with multiple cirrhosis, that there's kind of that hidden benefit for children too, where you can see your, your loved one have this really challenging thing that they're dealing with. But you also see the stamina and the bravery and energy that they bring to that which kind of gives you this example within your own home of this is how you rise to challenges. This is how you overcome and kind of gives you sort of that encouragement which results in those long term effects you mentioned of that increased empathy and resilience overall. Any other specific tips for kind of ways to meet your own expectations of what it requires to be a parent?

[B]

Yeah, parenting nowadays is tough. I, I have children myself and they're the greatest blessings in the world. But what you see on the Internet or on social media makes you believe things need to look a certain way. And it's almost like you're keeping up with the Joneses just at an amplified level because it's in your face all the time. And so my advice is stay off of those sites if they're causing anxiety. You know, I think, you know, you have to be very value oriented and on the same page with your kids and your significant other about what that looks like. This is your life and you get one chance to be a parent. Am I going to mess up? Oh, yeah, absolutely. I think we're all going to make mistakes in parenting our children. But one of the greatest gifts I can give my children children is an apology so that they learn how to also apologize and kind of model those psychologically healthy types of relationships. We're all going to make mistakes and I think that's a valuable lesson for us all. What are your thoughts about this? I think this is a tough one.

[A]

I think fundamentally, at least from, you know, the perspective of a kid and now a father, that the Most important thing is just sort of those personal moments with the family, those moments where you can show love and gratitude and grow together. And those really just take time and presence and attention, which doesn't require sort of a 24, 7 kind of a commitment to the next best thing.

[B]

And I love your comment about gratitude. I think if we can practice gratitude, you know, throughout our day, what a beautiful example we're setting for our families. That's something that I love to bring into my practice with my patients, too, is just having that gratitude every day for something, even if it's as little as I got to put my feet in the grass today, or I got to watch the clouds float by or whatever it is for them, but finding something different every single day that they're grateful for really changes your life.

[A]

Absolutely. It shifts the perspective and allows you to kind of recognize all those beautiful things that you're immersed in day to day that can sometimes get lost.

[B]

Yeah.

[A]

Is there any specific advice you might have for people who are diagnosed, who don't yet have children and weighing the uncertainty of this new illness and trying to fit in their future family plans with it?

[B]

First and foremost, you want to discuss that with your doctor. Like, what does this look like for me? Is this something that I can do safely? And I think the answer will more than likely be yes, but making sure that safely, they're off medication so that this doesn't affect the pregnancy. Of course there are ways to do this, whether it be you're birthing the child yourself or you're adopting or whatever this looks like to you. I have a patient of mine who met her husband in our infusion room, and they both have ms, and I got the privilege to go through their entire journey with them. So I was treating her individually, and then when she met her husband, like, I got to go through that whole experience of the dating process, and then he proposed to her. Then they tried to get pregnant, and it took a little bit of time to make sure that the timing was right, where she was off her medications and it could be healthy and they got pregnant. And I will never forget the day. I mean, seriously, I'm having chills telling you the story, but I will never forget the day that I walked to the waiting room and they said, we're pregnant. And I just remember hugging them both and just tearing up with them and their joy. And then I got to meet the little girl, and she came into my office. And for years, this little girl was drawing me pictures in my office, and she just meant so Much to me, because I got to see her mom and dad through their whole process.

[A]

Absolutely. It's an incredibly beautiful experience of a fairy tale story.

[B]

Yeah. So talk about, like, perspective. Right. Like, my patient would have never met her husband had she not had Ms. So I think there's a little gratitude for Ms. There. Right. Like when you get to meet your spouse through that. And I'm sure that's not the only story. What a shift of perspective.

[A]

Yeah. That's beautiful. Thankfully, we're getting better and better with the treatments that we have for stabilizing patients and taking care of them and reducing relapses. But for those patients who do kind of have a bumpy clinical course and maybe have some bad days or relapses or are trying to sort of incorporate that into making sure their family is still doing good and that their kids are still okay. Do you have any advice for those situations where maybe new symptoms occur or relapse occurs?

[B]

One of the rules that I use in my practice is the three by three by three rule, which is that when you're going through it. So if there's a new symptom, if there's a relapse for the first kind of three weeks, it is literally all you think about. And I think that's okay. I think that it's okay to care so much about your family or your disease and wanting to get better that this is all you think about. So if there was a board in front of your face, that's all you look at for the first three weeks, and then that board kind of moves to your peripheral vision, like still very much within your eyesight, and you still think about it, but it's not everything you think of for the next three weeks after that, and then by three months, it's kind of like, okay, I got this. I'm going to deal with whatever's in front of me. And now it's like really far from your peripheral vision. It still might be there. It still might have a shadow, but it's not something that you think about all the time. Psychology can really help in terms of helping the person to cope or come up with a treatment plan or manage their stress or their anxiety or their depression or whatever it is that they're facing. But, you know, the. The motto is kind of this too shall pass and allow yourself to grieve. Allow yourself those moments of sadness or anxiety or whatever that looks like until you get to the point where it's not all confus. Consuming anymore.

[A]

If you had to maybe give One specific piece of advice or how you would approach a newly diagnosed patient who's a parent who's thinking about the way this might affect their life and maybe what they could do to help prepare themselves. What. What would that be?

[B]

There's two things that I would say. First and foremost, we get one chance to parent, and so don't let Ms. Steal that from you. We don't want to give our power to Ms. We have to manage it, and we have to keep up with our appointments, and we have symptoms that need to managed, and that's okay. But that doesn't mean that it gets to consume us. It doesn't get to define us. We have the power to control our lives. But the second thing I would say is, you know, Ms. Does steal from us. It steals sometimes our fatigue and sometimes it affects our emotion. We have to give ourselves, in some instances, shots, or you have to go get an infusion or whatever. It steals from you. And don't let Ms. Steal your joy. Joy is something that we can control. We can give joy to our kids or we can take joy away from our kids. We have a lot of power. It's our responsibility then, to make sure that we're providing that safe environment for our kids where we can have conversations related to their emotions and what this looks like not only for us, but for them.

[A]

Well said. Well, Dr. Sullivan, thanks so much for your time and for everything you do for people with Ms. Oh, absolutely.

[B]

Thanks so much for having me today. It was a pleasure to be with you.

[A]

Julie Stam was diagnosed with Ms. In 2007, and since then, she has made it her mission to educate, advocate, and support others battling chronic illnesses. After the birth of her son, Julie wrote the children's book Some Days A Tale of Love, Ice Cream, and My Mom's Chronic Illness to provide a window into her life as a parent and normalize the experience of living with Ms. Hi, Julia, Welcome. Welcome to the podcast. Thanks so much for talking with me.

[C]

Yeah, thank you for having me. I'm really excited for this.

[A]

To start us off, could you describe your book Somedays and tell us what it was like to write it?

[C]

When my son was born, I decided from the very beginning that I was going to be very honest about having Ms. I didn't want to keep it a secret. I feel like that would be just a major disservice from an educational point of view. But also I didn't want to have that kind of withholding. And I understand not every parent wants to disclose, but I do think our Children are a lot more resilient and aware, so including them in the conversations makes it a lot less scary. But I didn't find materials that I felt comfortable reading to my son because he doesn't need to know about delination or relapses or progression. He doesn't need that kind of vocabulary. He needs to just know that our days might look a little bit different, but we're going to be okay and we have plenty of love and that's going to get us through. So that's really where it stemmed from, and I'm really proud of where it's going.

[A]

Julie, would you mind telling us how old your son is?

[C]

My son is now 9, and the book is geared more towards the younger crowd because I wanted to start the conversation. The most engaging readings that I have is five year olds. That's the best group. We get wonderful conversations and I love seeing their minds work.

[A]

Absolutely. Yeah. I recently read it with my daughter and was in tears by the end of it. Having a mom with ms, it does a great job of capturing those moments in childhood when you're kind of just forced to face a slightly different reality, but nevertheless something that doesn't really detract from the love that you have. Was there anything that gave you inspiration when writing the book?

[C]

Well, my son, I say that I wrote the book, but it really was him because I wrote him letters from when he was born, moments that I want him to remember, like first words and first steps and all that. But also I wrote him very open letters on the days that I felt like I failed him as a mom. The. Hey, I cried myself to sleep tonight. And this was a horrible day for me, you know, like running to the bathroom or being too hot out or, you know, my legs not working. There are so many times that just all parents feel like they let their children down. But I think when you add a chronic illness, there's a different element there. So then I started talking to my son every night. What was your good part of the day, the bad part and the crazy part. And he sees it so different. You know, we walk down the street and he'll see, you know, a manhole cover and think it's a portal to another universe. Kids have these wild imaginations, and I think we as adults often decide what would be valuable. Like, was it the ice cream that day or. And sometimes it's. It's literally just cuddling on the couch that's the most exciting part for them. So communication is key, I think.

[A]

Absolutely. That's something that Comes up with a lot of my patients is that sort of concept with guilt and kind of living with a chronic illness and still trying to be the type of parents you want to be. I don't know if you could maybe talk more about what your experience has been like dealing with that. Yeah.

[C]

I have to say I'm very proud of the mom that I am, and I think that's in spite of Ms. And I'm proud of the conversations that I have with my son and his friends and the communication and, you know, and his class moved to the second floor, and they were all worried if I was going to be able to make it up the stairs because I go often. And they were thinking of ways to make the playground more accessible. They have these beautiful unskewed minds. And I love that we can have these conversations. And I think every parent has guilt. I mean, did they have too much screen time? Did they have not enough vegetables? You know, all those things that run through your mind day in and day out as a parent. But I think in spite of ms, our children come out stronger, more resilient. My son is the one that will make sure everyone has food before. Before he does. They are so empathetic and kind. I think he's going to be proud of the mom that he had. So I do think that anyone that's thinking of having a child that has ms, if it's something that you want to do, Ms. Shouldn't be the reason why you don't do it.

[A]

Would you mind sharing a little bit more about kind of your initial diagnosis and your journey with ms?

[C]

Yeah. It took so long to get diagnosed. It took me seven years because bladder and bowel were my initial symptoms. I had just moved to a new country, and. And I think I did myself a disservice in not being a very good advocate because I would focus on the most debilitating symptoms and not talk about, like, the vision issues or the tingling or any of the other symptoms. I was just like, fix the bladder, you know, and so it took a long time. And I decided from the beginning that I was going to be an advocate. I have moments. I still, to this day, I take one day where I let myself grieve all the loss because it's continuous. And, you know, each new symptom is another moment that you have to grieve and let yourself feel sad. But then you have to get through it. You know, I tell people, with COVID we all got a little taste of what it's like to have Ms. Because you had to stay in, you wanted to go out, you had to take medicine. You couldn't live the life that you dreamt that you would. But you know, like, we all got through it. Ours won't go away, but we'll continue to fight and go through it and just adjust and adapt. And I think the community that, that MSers have is remarkable. You know, we all know each other and there's so many of us, but it's a very small community.

[A]

I absolutely agree. And Ms. Is challenging in the fact that it's not only something that is very challenging initially, but there's also a lot of uncertainty associated with the condition. You know, I hear from a lot of people thinking about their future and what life's going to look like and whether or not things are going to change and sort of dealing with that type of uncertainty and already sort of an uncertain process of parenthood. How did you kind of grapple with, with, with those types of feelings?

[C]

That's something I still struggle with. But I do know that if I go back to the girl I was, you know, 18 years ago when I was diagnosed, I thought this was like the end of the world. This is horrible. And now I'm like, oh my gosh, you know how much you're going to be able to overcome. And I know in 10 more years I'm going to look back and say, oh, girl, you have no idea how hard it's going to get. But I do know that I have the ability to adjust and I will continue to do that for my son and for myself. And it's a different disease than it was. We have more treatment options and I am naively optimistic that there is a cure in our future. Within my lifetime, just in the last 18 years, the amount of progress that we've made in this arena is remarkable. So 20 years from now, who knows what we'll have. So I try to stay optimistic.

[A]

Absolutely. And I think that's an important message. If there's any listeners in the audience who are newly diagnosed, those are very emotional and really life changing times and sort of hearing from someone who's been able to find so much meaning and joy from navigating the experience I think is incredibly helpful.

[C]

I host a support group for newly diagnosed and I say newly diagnosed and I think that's the first five years you're struggling with what is this new identity, you know, and my encouragement is to focus on the people that have a positive outlook because if you Google anything, it's going to come up with negative stuff. So Try and, like, surround yourself with the people that will inspire you to stay hopeful, because there is hope in.

[A]

This, in terms of kind of thinking about how Ms. Fits in with family. Some things that I'll hear back from patients, especially when they're newly diagnosed. You know, how do I talk to my children about this? Is this something that's going to affect my ability to be a parent or have the type of family that I want? I don't know if you've had to sort of face similar questions yourself and how you dealt with them.

[C]

Well, I have one story that I hope inspires people to be transparent with their children. I was doing a reading to teenagers, and the girl raised her hand at the end and she said, when am I going to get it? And I was like, what do you mean? And she's like, well, my mom has it and her mom never talked to her. So for 13 years, this girl is carrying around, just waiting. And so when I gave her a hug, I was like, sweetie, that's just not how it works. You could physically feel the weight come off her shoulders. So just being honest, whether you're telling your children or you're telling your friends, hey, I have ms, it's something I deal with, and it's not going to be your burden. But I just want to cue you in just so you can be aware. There might be a little adjustments. And if you make it light, it will be light for them. If you make it heavy, it's going to be a burden. So I think the way you deliver the diagnosis is really what matters.

[A]

And you exemplify this with your story as well. You'll be surprised how resilient and sort of optimistic a child's perspective can be. And you may have your sort of own expectations about how they're going to take it. And then oftentimes be quite surprised when they're able to sort of rise above what you thought might be a challenge for them. And then in general, with ms, one of the tricky things is that there's so much kind of going on below the surface, or so much that may not kind of be present day to day. I have a lot of people who deal with fatigue or pain and good days and bad days. How do you sort of reconcile those changing symptoms with the roles of parent?

[C]

Coming up with creative ways for them to burn energy. Like when my son was younger, bubbles saved the day. I was able to stand there and he was able to chase and pop bubbles. There's so many creative ways to make it exciting for them. They Just want to know that you're there. But not everything has to be a big adventure. It could just be being together or going to the movies. They love that. You know, I struggle with walking, I struggle with vision. There's so much that I struggle with. But my son doesn't need to feel that. I think I do more as a mom with Ms. Than most parents do that are able bodied just because I'm always trying to compensate.

[A]

Is there any main takeaway that you were hoping for kids to take away with reading the book or that you've heard from talking with kids?

[C]

What I've learned is that I think it's one in four of us have a different ability. Everyone has something, whether it be depression or epilepsy or I love at the end, most kids are like, well, I have this and I have diabetes. And everyone's empowered by their difference instead of feeling sad or like they have to hide it. And, you know, it's great to empower them, to be proud of what the difference is. And I'm not embarrassed that I have Ms. There are certain symptoms that I find very embarrassing, but that's not something the children see. So I think listening to them is the most important thing.

[A]

If you had a specific message, maybe for a parent with Ms. Who's struggling or someone maybe who's newly diagnosed, is there any specific thing you'd say to that person?

[C]

One thing to remember is that each phase is hard for its own specific reason. So when you have ms, adjusting to being a parent could be a little bit of a challenge, but you'll get through it. And then as your children grow up, it's a little less physically demanding and you can be the president in a different way, but all you have to do is give your children love and support and you're going to be just fine.

[A]

Yeah, I totally agree. And I definitely recommend to our listeners to get Some days. It's a phenomenal book. It's also beautifully illustrated and a fun one to read. My daughter just likes kind of flipping through the illustrations. And in terms of the future, do you have plans for future projects? I selfishly would love another story or adventure.

[C]

I wrote another book. It's currently in the works that's more on the power of positivity. I would like to do a sequel, but a little bit more detailed for an older group set. Maybe like teenagers, just so they understand a little bit differently. Just having that conversation is really important to me.

[A]

Absolutely. Really looking forward to that. Thanks so much, Julie, for your time and for talking with me and for everything you do for people with Ms.

[C]

Thank you.

[A]

Thanks to our listeners for downloading this episode of the Ms. Living well podcast Parenting with Ms. If you're listening today, as a parent with Ms. Or someone who has hopes to be one in the future, I want you to leave knowing this. You are not alone and your story can be one of joy and possibility. We've heard today how children of parents with chronic illness can grow into some of the most empathetic, resilient people you'll ever meet, and how there are real, practical ways to navigate each stage of this parenting journey. Thanks so much Dr. Sullivan and Julie Stamm for sharing their wisdom and experience with me. I highly certainly encourage you to pick up Julie's book some days. It's heartfelt and beautiful and truly captures what it's like to parent with a chronic illness. I hope you'll check it out. Thanks again to TG Therapeutics for sponsoring this episode. Keep in mind the topics we discuss on this show are strictly informational and not medical advice. Any change in your treatment should be discussed directly with your healthcare providers. Our show is hosted by me, Dr. Jamie Holloman and Dr. Barry Singer and produced by Carrie Ed Harmon. Our theme music is the Gold Lining by Broke for Free. If you like the show, please share it with others living with Ms. When you get a chance, please post a positive review on Apple Podcasts. It helps more people find out about the show. You can follow me on x rainboyneuro1 and Dr. Singer at drbarrysinger. More information about our guests and their website can be found in the show Notes for this episode in the blog section on mslivingwell.org thanks so much for listening. This has been an Ms. Living well podcast.