Living with a Chronic Illness Audiobook
Sasha learns about her brother's chronic illness and how to be a supportive sibling, in this audiobook version of our award-winning comic book Understanding Chronic Illness.
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Rebecca: Hi there and welcome to a special audiobook installment of Jumo’s In My Words podcast series.
At Jumo, we produce everything from comic books that explain difficult medical conditions, to videos where families share practical insight and their stories of hope. Learning how to manage life after a diagnosis can be stressful and confusing, and we aim to make that a little easier. From epilepsy and Crohn’s disease to fractures, MRIs, and lots in between, we’ve got you covered.
OK let's get started. Today story comes from our Understanding Living with a Chronic Illness comic book. Brother and sister team Sammy and Sasha join Axon on a trip back in time through their own memories to learn what chronic conditions are and how Sammy's has impacted their lives.
Sasha: Today’s the day...the day we finally go to Fun Land and I get to ride the Rocket-Tron 3000...considered the greatest roller coaster ever built! If you can ride it without puking you get a free t-shirt!
Dad: Actually Sasha, Sammy isn’t feeling well so we’re going to have to reschedule.
Mom: Sorry, honey.
Sasha: How can you be sick again? You were fine yesterday. I just don’t get it.
Sammy: You think I like it? Try putting yourself in my shoes!
Axon: Excellent idea!
Sasha: What are you doing here?
Axon: Well, I was sort of eavesdropping from an orbital space station billions of miles away-- sorry about that. But I heard what you were talking about and I thought I could help!
Sounds like you both need help understanding Sammy’s chronic illness. Here, put these on!
Sasha: Okay cool-- wait a second! This isn’t going to body swap us or anything so I can be in his shoes, is it?
Sammy: I sure don’t want to do that!
Axon: Eww gross! No, I’ve got a way better idea. Say hello to your Neuro-Reminiscence Temporal Translocators.
They allow us to travel through your memories!
Sasha: No way! Hello neuro-remember--whatsits.
Sammy: Oh wow, let’s do this!
Axon: Excellent, here we go!
Sasha: Whoa, what is this?
Sammy: I remember this! It was when I first found out I was sick. I felt so alone.
Axon: I know it can seem that way, but 10-15% of children have a chronic illness. This is also called being medically fragile.
Sammy: This was when I found out I was going to have to miss a lot of school. Mom and the doctor stepped outside to talk. I felt so sad and scared and even angry. I kept thinking why me?
Axon: Everyone responds to having a chronic illness in a different way, but all of those feelings are totally okay. It’s normal to feel guilty, stressed, or worried as well.
Everyone feels those things sometimes, but you may feel them more if you have a chronic illness.
Sasha: But what is a chronic illness?
Axon: Excellent question! Everyone gets sick sometimes. We all get headaches and colds and tummy aches. These are usually called acute illnesses.
Sammy: Acute illnesses make you feel rotten but usually go away after just a few days.
Sasha: That’s when I had that terrible cold! I thought I was going to drown in tissues.
Sammy: Yeah, there was nothing a-cute about that. Get it? Heh heh heh.
Axon: A chronic illness is one that lasts for a long time. Many chronic illnesses last for your whole life.
Chronic illness can have acute problems too. Your chronic illness might be well managed most of the time but it can get suddenly worse. This is sometimes called an acute flare.
There are a lot of different chronic illnesses, and they all have different symptoms, treatments, and outcomes.
Most people with a chronic illness don’t think of themselves as having a chronic illness, but as having a particular condition like asthma, epilepsy, or sickle cell disease.
Some chronic illnesses begin when you are born so you won’t remember a time you didn’t have it.
But other chronic illnesses, such as type 1 diabetes, cancer, and epilepsy, can start at any age.
Sammy: I don’t remember this. Sasha, why were you so sad?
Sasha: I think this is my memory. You were always sick as a baby. Don’t worry about it.
Axon: How the illness affects you can change depending on how old you are when diagnosed.
When you’re younger, your parents or carers will help you a lot, but as you get older you’ll take on more responsibility yourself.
Sammy: Yeah, mom still tells me when it’s time to take my medicine, but she’s teaching me how to do it myself!
Sasha: My last birthday! Why are you remembering this?
Sammy: I was having another flare up that day and had to miss it.
Then I got worried and scared thinking about the other stuff I might have to miss out on because of my illness.
I felt so bad I had to miss your party. Then I felt angry at my stupid body for getting sick all the time.
Then--well then I felt guilty. Maybe it was my fault that I was sick, and maybe I could have done something different and then I wouldn’t be sick now.
Axon: Sammy, I can assure you that having a chronic illness is 100% not your fault, or anyone else’s fault.
It’s horrible to have those feelings, but it’s also totally normal.
Being diagnosed with a chronic illness is a wild ride! You’ll have good days and tough days, and you’ll go through a lot of different feelings.
Sasha: But don’t worry, little bro, it’s not a ride you have to go on alone! I’ve got your back!
Axon: Eventually, living with your chronic illness will just feel normal, but that’s a long process.
The more you learn about your illness the easier it is to cope with! There’s a whole team of doctors, nurses, and experts ready to help you do just that!
Sammy: Like Nurse Jane! She explains things so well, And she’s really funny!
Axon: But don’t forget, Sammy, you are an expert too! No one knows your body or how you’re feeling better than you do!
You and the doctors and the nurses are a team! You have to work together to figure out the best plan for you.
Sammy: Sometimes it just gets too much, you know?
When I think about school and homework and chores and my friends and all the other stuff I’ve got going on, on top of being sick.
Axon: I totally get that. Growing up is the hardest thing there is.
But remember, despite everything, you’ve made it this far. Just keep going!
Sasha: Yeah, Sammy, you should be really proud of yourself! I know I’m proud of you!
Sammy: I never thought of it that way. Thanks guys!
Axon: Chronic illness doesn’t just affect you, but your whole family. A lot of the time, parents feel more protective of a child with a chronic illness, showing them more attention, which can make their siblings, feel left out.
Sammy: Wait, that memory from earlier! You were sad because mom couldn’t pay you much attention because she was taking care of me.
Sasha: Umm, yeah, with you always being sick it was hard to get mom and dad’s attention sometimes.
Sammy: Wow, I never thought about how my illness might affect you. I’m really sorry.
Sasha: It’s okay. We’re both learning a lot today!
Axon what’s next on educational memory lane?
Axon: Feelings! This is really important. We’re going to talk about anxiety and depression.
We’ve already talked about how having a chronic illness can make you feel sad, angry, worried, and scared, and how these feelings are totally normal.
But what’s not normal is if you have so many worries that you feel overwhelmed and are unable to cope with everyday life. This is called anxiety.
Also, if you feel so sad that you can’t do the things you want to do, or have trouble getting out of bed in the morning, you might have depression.
You can get help for anxiety and depression. If you think it’s anxiety or depression, tell someone you trust, like your parents or healthcare team. Any of these guys will get you the support you need to make you feel better.
Sasha: Hey, that sounds like good advice, Sammy.
Sammy: Yeah, I agree.
Axon: I think that’s enough traveling through the past, let’s get back to the present.
Sasha: Whoa, that was crazy! To think I was upset about not getting to ride a rollercoaster, when, Sammy, your whole life is a rollercoaster!
Sammy: Yeah, it can be, and I’m sorry it sometimes makes your life hard too!
Axon: Growing up is hard; growing up with an illness can be even harder.
There’s nothing easy about having a chronic illness, but I do have a few more tips that can help.
Share your thoughts and feelings with people you trust.
Learning all that you can about your condition can help you deal with problems.
Find out what helps you to relax. Try different things like going for a walk, drawing, listening to music, or writing about your feelings.
Connect with other people with your chronic illness at a summer camp, a support group, or online.
Remember you’re doing a difficult job so it’s okay to ask for help.
Be proud of yourself! You’ve already got this far!
Axon: Uh oh, I’ve gotta go! I’m getting a call for another Meducation emergency!
Sammy: That’s okay, I think I better have a rest now anyway.
Sasha: Thanks Axon!
Sammy: And thank you, Sasha, for everything.
Sasha: Anytime, little brother!
Narrator: A few weeks later at Fun Land...
Sasha: I think we’re making new memories!
Sammy: Yeah, awesome memories!
Axon: Yes, awesome--terrifying--slightly nauseating memories!
Rebecca: Thanks for listening! We'll be adding new episodes all the time. We also take requests, so if you have a great topic, let us know! Who knows, we may even interview you! Visit us at JumoHealth.com.
In My Words is produced in New York City and distributed worldwide.
In My Words - A Jumo production.