Gigi Robinson, author of A Kids Book About Chronic Illness, talks about the lifelong health issues that can make the simple act of growing up feel different for kids who have them.
Gigi Robinson, author of A Kids Book About Chronic Illness, talks about the lifelong health issues that can make the simple act of growing up feel different for kids who have them.
A Kids Book About Chronic Illness (view book)
Full Book Description:
Chronic illnesses are lifelong health issues that can make the simple act of growing up feel different for kids who have them. And that can sometimes be lonely and frustrating. But learn from an author with a chronic illness how to reshape your mindset, find new passions, and pour your energy into things that empower you and fill your life with joy.
About the Author:
Gigi Robinson (she/her) is a GenZ thought leader and motivational public speaker who talks about chronic illness, body image, and confidence. Gigi’s positive outlook on life is based on her well-known mantra “Everything You Need Is Within,” which has empowered millions around the world to become their own best advocate.
*If you want to be on a future episode of A Kids Book About: The Podcast or if you have a question you’d like us to consider, have a grownup email us at listen@akidsco.com and we’ll send you the details.
A Kids Book About: The Podcast
S3E05, Gigi Talks About Chronic Illness
[INTRODUCTION]
Matthew: What is a chronic illness?
Isabelle: It is an illness that never goes away.
Gigi: I think what defines a chronic illness or what a chronic illness is, is when you are sick for a long amount of time. And I don't mean 10 days or two weeks or a month. It means, you know, half a year, a couple of years forever for the rest of your life. It's something that means that you have a part of your body that isn't working well or working how it should.
Matthew: Welcome to A Kids Book About: The Podcast! I’m Matthew. I’m a teacher, a librarian, and I’m your host.
The voices you heard just a moment ago were from Isabelle and Gigi.
Each week we talk about the big things going on in your world with a different author from our A Kids Book About series.
Gigi: Hi, my name is Gigi Robinson. I'm an entrepreneur and author, a public speaker, and a content creator. And I'm the author of A Kids Book About Chronic Illness.
[TOPIC FOUNDATION]
Matthew: In addition to the way Gigi defined a chronic illness at the start of this episode, she uses the following language in A Kids Book About Chronic Illness:
“Having a chronic illness means you have a health issue that’s lifelong and may present you with different challenges as you grow up.”
First up, let’s understand the likelihood that you will be diagnosed with a chronic illness. Are there things that cause it? Are there things that can help prevent it or shorten its duration?
Gigi: So I'm not a doctor and I wanna make sure that everyone knows that when they're listening. But I believe yes, anyone can be diagnosed with a chronic illness or, you know, a mental health illness, which it can also be chronic at any point in time the same way that, you know, a bird can poop on your shoulder while you're walking at the same time.
I think that it’s definitely something that anyone can deal with at any point in their life. And, unfortunately, there are a lot of things that we know about diet and what we eat and how that affects chronic illness long term, especially when it comes to processed food and meat and dairy consumption and alcohol.
So I think that as, you know, we get more science about chronic health, hopefully people start eating differently in a way that is more, you know, for their body. Our bodies are like our sanctuaries and so it's important to really nurture that and take good care.
Matthew: Gigi has managed a chronic illness for more than half of her life.
Gigi: I was diagnosed with EDS at age 11.
Matthew: EDS stands for Ehlers-Danlos Syndrome. Gigi will say more about that in a moment.
Gigi: I kept getting injured really easily, doing normal things, like doing a cartwheel, jumping off a water trampoline at the lake at camp, you know, accidentally twisting my ankle and fracturing it.
And so eventually one of my doctors here in New York City pieced it together and suggested I go see a specialist. And as I did that, that was, you know, when I got my diagnosis and then I just started doing a lot of physical therapy and all of this.
So I was diagnosed at a young age. And hypermobile Ehlers-Danlos is kind of like when a rubber band loses its elasticity and it's all stretched out, but that is the connective tissue holding my bones and joints together. And so because that's loose, it makes it easier for the joints to slip out of place and get injured easier than people that have normal, elastic, rubberband-kinda muscles.
Matthew: True story: my mom has a chronic illness and has been managing chronic pain since I was around 9 years old. She was diagnosed with Reflex Sympathetic Dystrophy, or RSD, and still manages it to this day.
I saw firsthand the way that this affected her and her ability to face different tasks and challenges. And there were definitely some really, really hard days for her. I could tell just by looking at her and hearing how she talked to me. But there were also days when the pain wasn’t as bad. And on those days, I felt like I got my mom back. I bet she felt something like that, too.
Chronic pain is something that is ongoing and doesn’t go away. There may be moments when the pain is worse and moments when it’s more manageable. I wonder how Gigi feels today, as we’re recording this interview.
Gigi: Yeah, I mean, I feel great, honestly. I think, you know, part of my career today is talking about chronic illness in a way that is in a way more, more casual. I want more awareness towards it, and so it's not dramatic or over-sharing for me to talk about any of my health issues, I think it's more empowering. It helps other people deal with their health issues. And if that is, you know, what comes from me talking about it, then that makes me really, really happy to do.
And I think, you know, as I mentioned, I'm not a medical practitioner. I'm not licensed in medicine. However, I do have the patient experience of about 15 years dealing with the medical system, dealing with this chronic illness, trying to find pain relief over the years.
And so, you know, some days are really, really good and you don't have any pain at all and other days are bad and you can feel really, really crappy and not wanna get out of bed. And I just think that that's a part of chronic illness from. From anyone I know that deals with a chronic illness, that's kind of the same sentiment where some days are better than others. And I think that's also true for everyone. It just might feel physically a little bit different for patients with chronic health issues.
Matthew: When we get sick with a cold or fever, we take medicine to help with the symptoms. We might also drink more water or change what we eat to make it easier on our tummies. And, of course, rest and sleep can also help a great deal.
Chronic illnesses are different from these viruses that our bodies can usually fight off in a few days. And, depending on the diagnosis, doctors and researchers still don’t know how to fully alleviate a person’s chronic illness. But there are still a number of things a person might do to help care for their body.
Gigi: For me, I mean, I, I've done a lot of research into the food that we eat and, you know, processed food’s impact on the gut and how the gut has an entire kind of network of working with your body and your mind. And if your gut is not good and it's not in a good, healthy state, there is a possibility that it can affect other parts of your body and cause chronic inflammation or migraines.
And I believe that I was dealing with some of that for a long time because of my diet. I didn't realize, I actually, I mean… I know we're talking about one of my chronic illnesses, but I got bit by this tick called the lone star tick, and it causes an allergy to meat, actually. It changes your blood chemistry. You guys can look it up. It's called the Alpha-Gal allergy syndrome.
And so I was eating meat for years and years and years. I knew I had sensitivities to dairy and gluten, but I still ate it. And I got this allergy test in December of 2022, so, you know, only about half a year ago. And I've been vegan and gluten-free ever since. And let me tell you, the. Inflammation in my body that went down and also the chronic pain that went down, the levels went down. I'm on a third of the dose of medication that I was six months ago.
I also got diagnosed with endometriosis. And so for some chronic illnesses like endometriosis, that's something that is obviously a whole other conversation here. But, you know, that one can be or healed in some ways potentially, or treated with surgery.
And so I think it's a mixture of diet, of mindset, of potentially surgery, and then on top of that, acupuncture, massage therapy, water aerobics, physical therapy, um, and doing really anything that you can to feel your best.
Matthew: Let’s take a quick break. And when we return, Gigi talks about the power we have to respond to our pain and to the things we go through.
Gigi: The number one thing to think about when you're seeking treatment for chronic illness is how can you manage your pain and still navigate life and function. That's the ultimate, I think, tagline of, of what I, I encourage people living with health issues to deal with, to kind of keep in mind.
Matthew: We’ll be back in just a moment.
[BREAK]
Matthew: Welcome back to A Kids Book About: The Podcast. On today’s episode we’re talking about chronic illness with A Kids Book About author Gigi Robinson.
You may already be feeling a certain way about chronic illness based on this conversation. In fact, I’d bet you’re feeling a fair bit of sympathy for Gigi, knowing that she and others are managing illnesses that go on much, much longer than you’re used to.
Or maybe you’re feeling empathy because Gigi has shared something that’s similar to something you or a family member has experienced.
Isabelle: It makes me feel bad for them because sometimes they can't do things that other people do.
Matthew: Whatever you’re feeling, acknowledge it and know that you’re right where you’re supposed to be.
Today, here’s how Gigi is feeling about chronic illness:
[PERSONAL CONNECTION TO TOPIC]
Gigi: It's definitely. It's a love hate relationship, right? It's something you have to learn how to live with, and, therefore, it's a piece of yourself that you have to learn how to accept and love. And it's also something that you can have really strong feelings of resentment, of guilt, of frustration, of hatred for this thing that you can't change in your body, right?
I looked for 15 years for an answer as to what was causing my pain, and I only found it at 25 years old. It's a long, long journey to figuring out what you have and how to manage it.
There's all of these possibilities that also come with thinking about chronic illnesses, like long-term fertility, long-term mental health, long-term finances, and long-term impacts on relationships and friendships. I mean, I've been so lucky to have such an incredible support system, but when you really think about how chronic illness impacts every single piece of your life, I think that's the part that gets a little bit frustrating. It gets a little bit scary. It gets sad because you just never know.
I've been in situations where teachers at my school didn't understand how sick I was, and as a result they said I was faking it. I've had partners tell me that I'm not active enough for them. Obviously, those are all people that I wanna leave in the past and not bring into my energy.
And I'm lucky that I do have such an incredible support system of my family has always been super kind and understanding of my health issue and helping me get the care I need. My partner's super understanding and helpful and just wants me to feel better. My close friends are. And so, I think, you know, it's not necessarily the chronic illness itself, it's the impact it has on your real world relationships outside of yourself that really make you think about, I think, how it runs your life in some ways.
Matthew: There is this line in A Kids Book About Chronic Illness that I cannot stop thinking about, maybe because it speaks to something beyond the topic of the book alone.
Here’s the line: “You have the power to choose how you respond to the things you go through.”
Is this something you’ve heard or thought about before, listeners? That you have the power to choose how you respond to the things you go through. It’s an active statement, and it’s deeply empowering.
Gigi: So I got another chronic illness diagnosis back, you know, six, seven months ago, um, called endometriosis, and I didn't want another health issue on top of what I have. Let me state that first, but second to that, I had the decision, you know, I could have been and, and, and it's okay to feel both. I was frustrated. I was mad that no one caught this earlier. I was super upset that I even had this to start with.
I had to think about, you know, long-term, you know, family planning and how much this new chronic health issue will ultimately cost me over the course of my life, in addition to what already exists.
And I also could choose to feel grateful that the doctors finally figured it out, that I finally have some relief, that I have some closure, some peace of mind knowing this is something that has been causing me pain and inflammation for over a decade. And now I have an answer. And it wasn't all in my head. And so in a way it was the thing that both validated me, but also frustrated me.
Even with my Ehlers-Danlos, in college I had teachers and friends not believe me, and in the moment that was so painful and, and sad emotionally that people around me didn't accept me for who I was, which is I think what everybody in this world is striving for, right? We look for community that accepts us and sees us as we're and people that have empathy and care about our story and where we come from.
And so even though that situation was really, really frustrating and I had to go through those friendship losses and ableism at school and, you know, medical ableism as well, from that I was able to decide, “Okay. You can do something good with this information.”
Because anytime you're going through something, you're really just getting information. And so how are you gonna process it? Are you gonna process it with a negative mindset or a positive mindset? Are you gonna say “Everything sucks? They suck. I'm never gonna get an answer.” Or are you gonna say, “Maybe there's hope if I talk about this, maybe someone knows something I don't. Maybe it'll inspire me to ask a new question to a doctor, right?”
If I didn't bring up certain things about my lower back pain that I experienced for years and my migraines that were happening around the time of my periods, which is called menstrual migraines, my doctor wouldn't have suggested going to a specialized surgeon for endometriosis. And so talking about it online led me to other things that helped me get to where I am today.
Matthew: If you know someone managing or struggling with a chronic illness, even if you’re just learning about their diagnosis or if it’s something you’ve known about for a long time, Gigi shared some great suggestions for how you and others can help support and care for those special people in your life, whether they are your classmate, your friend, or a member of your family.
Gigi: I mean, I think, you know, some things are easier said than done. But as a friend or a caretaker of somebody who's dealing with a chronic illness, I think, you know, asking questions is one of the best things you can do.
Saying, “Hey, can I ask a question about what you're going through and about your chronic illness?” And that way instead of just asking the question flat out, you're asking for permission to enter the space because sometimes people dealing with the health issues, like they deal with it all the time.
There was a period of my life where I was at a doctor's appointment two to three times a week, um, on top of physical therapy, regular therapy, occupational therapy, trying to figure out testing and doing, you know, seeing what was going on. And at the end of the day, like I didn't want questions about my health. I didn't want them. And so if, you know, when friends asked them to me, it almost made it like walking on eggshells where I didn't wanna talk about it and the friends were curious.
But had the friends said, “Hey, can we talk about this now?” Or, like, “I have a question. Would you be open to answering it?” It gives the person with the chronic illness the autonomy to say yes or no. So that's the first thing I think is really important.
The second thing is, I mean, you know, we do have the internet, and I think looking up what a person dealing with certain chronic illness could be going through is really important. But also, obviously it's a little naive to say just trust that completely.
I don't want… I'm not saying go look up, you know, all of these things because you'll, you'll definitely see a lot of more extreme answers typically when you do a search on the internet for, uh, you know, “What is hypermobile Ehlers-Danlos Syndrome? How does it affect my friend,” for example.? Um, you know, you're gonna get a lot of different answers.
And I so I think if you stick to resources like the WHO, the World Health Organization. You know, I'm thinking about even the Mayo Clinic or anything that is medical, from, you know, Harvard Medicine or John Hopkins or any of these medical .med or .gov websites typically have information that is less biased and less opinion-based, where you can look at facts. So that's, um, a research tip.
And then, you know, last but not least, just kind of have empathy for them. Right? And I know there's a lot of discussions about that at A Kids Co and in a lot of the books, but it's really about, you know, some, some people do not understand how to deal with chronic illness. And I think knowing that if one day your friend can't go to play with you, or you know, if one day you can't show up to work or to school, it might be because somebody's actually having a hard time. And instead of going from a place of judgment of “Why can't you hang out with me,” it's like, “Oh, what's going on? How can I help you? Are you okay?” And I think those answers are very different.
And so for now, try your best to put on your “put myself in other people's shoes” hat on and just kind of think about the ways that you can empathize and, and feel maybe what other people are going through.
Matthew: Listeners, Gigi left one more message just for you as we close our time together. A connection.
Gigi: Thanks all for listening. If you have questions or you wanna talk to me, you can, you know, DM me about this. And if you're dealing with it, I hope that some of my content also gives you hope, knowing that there's a lot of things you can also do with a chronic illness. You know, I took my health issue and I made it into my career, and I'm able to do other things now that I'm getting better and go to, you know, smoothie screenings and live my life outside of my health issue. And so I think that, you know, also don't lose hope if you're dealing with it.
And yeah, you can find my work on gigirobinson.com or just Google me.
[CLOSING]
Matthew: Thank you to Gigi Robinson, author of A Kids Book About Chronic Illness, for joining us today. And special thanks to Isabelle for lending their voice to this episode.
Isabelle: My hi, my name is Isabelle. I am nine years old and I live in Rhode Island. My favorite thing to do is acting. I also love cuddling with my dog, Basil.
A connection I have is I have migraines. Sometimes I feel bleh and I can't do fun things.
Matthew: Thank you for sharing that connection, Isabelle.
A Kids Book About: The Podcast is written, edited, and produced by me, Matthew Winner. Our executive producer is Jelani Memory.
And this show was brought to you by A Kids Co.
Follow the show wherever podcasts are found and check out other podcasts made for kids just like you by visiting akidsco.com.
Join us next time for a conversation about design with A Kids Book About author Jason Mayden.