16 Years Later, Here’s What My Childhood with T1D Taught Me
When I was first diagnosed with type 1 diabetes, I remember being sent to the hospital for five days. One of the first questions I asked my mom while I was there was, “Can we get Dairy Queen when this is all over?”
That was back in 2004.
My mom’s response to my question seemed to confirm a childhood fear — I’d never be able to have ice cream again. (My favorite food.)
At that point in time, I was told by my doctors that I wouldn’t be able to have sweets and needed to follow a very strict diet in order to live a good life with the disease. I was told I would have to prick my blood at least three or four times a day in order to determine the right amount of insulin to give myself for every meal, which was going to keep me alive from here forward.
This was incredibly hard to process as a child. I didn’t really know what it meant or what was next.
The staff at the hospital showed me what administering insulin was like on an orange with a syringe full of saline. After showing me, they asked me if I would be willing to try the same thing on my own body. I refused, not out of fear, but out of anger and mourning for my “normal” life. I didn’t want to accept this “new normal” yet. I felt sad.
My Grandpa Jack visited me during this time and at that particular session, he offered to be the guinea pig for me. (My hero.) The nurse thanked him but declined the offer. She implied that it only mattered if I made the effort.
When I got home from the hospital at the end of this five-day period, I had all of the stuffed animals and toys the pediatric unit gifted me during my stay. I felt a victim for a short while, but soon turned things around and took control. I thought that if I had to be stabbed by a needle, I wanted to be the one to do it. I remember telling my mom this as I sat on my bed and she began to lower her hand to do it. I stopped her and declared it should be me.
Much like I learned to tie my shoes in a day because my kindergarten teacher decided it was the time I needed to, I did the same with my insulin injections, making myself my own primary caretaker and relinquishing the day-to-day management responsibility from my parents.
I was 10 years old.
What I learned about how to treat my body well
At first, I was a devotee to my newly assigned diet. I remember over the course of the first few years of my disease, I stuck to mostly apples and other fruits as treats. I steered clear of most sweets in order to maintain good blood sugar levels, with my management method of finger pricks and insulin injections. I was using long syringes and Humalog at the time for meals, Lantus at bedtime.
It wasn’t until I started seeing a certified diabetes educator (CDE) named Jane that my parents and I began to understand that the “low sugar” or “no sugar” treats full of artificial sweeteners weren’t a good compromise for people with type 1 diabetes. They were often more processed, unnatural and just as uniquely taxing on the body. (Some artificial sweeteners over the years have been linked to certain cancers, for example.) It became my understanding that the body doesn’t know how to process these artificial ingredients nearly as well as whole foods and natural ingredients.
Jane looked in horror at my mom when she asked if I could have the Skinny Cow ice cream bars instead of regular ice cream. She reaffirmed to us both that I was better off having one scoop of regular ice cream instead of artificially—sweetened desserts like that.
As a kid, hearing this gave me some hope. Ice cream, here I come! Better yet —Dairy Queen, here I come!
After meeting with Jane more over the years before she moved out of the practice into retirement, I began to learn that I could, in fact, eat much of what “the other kids” were eating. I just had to learn about how my body would react to it. I had to learn how to manage everything I ate with insulin meticulously. Carefully.
I had to know how to listen to what my body needed. I was given more of a nutrition lesson by having type 1 diabetes than my schooling over the years ever provided. (That’s a whole other post’s-worth of thought.)
Let me be perfectly clear with you — people with type 1 diabetes can eat anything people without it can. The only thing they can’t eat is poison.
As silly as that may sound, I remember many friends’ birthday parties over the years “accommodating” me with angel food cake, strawberry shortcake, or other “healthier” alternatives so that I got to enjoy the festivities with everyone else. While the intention of everyone who made this effort for me along my journey was good, it only made me feel worse as a kid.
I felt singled out. I felt abnormal. I felt like other kids could never relate to me. I felt like a burden. I felt like I wanted to leave each of these parties. I felt embarrassed.
Why didn’t they understand?
Of course, these feelings had other contributing factors, but type 1 diabetes played a large part. I didn’t know how to explain what I was going through to other kids. Sometimes, I didn’t even know how to explain it to my parents or sister.
Would they ever understand? Did they understand?
Dear God, today I hope they never have to understand it for themselves.
It was hard. I didn’t want to talk about it more than I had to. But, I wish I would’ve learned and accepted my condition sooner. I wish I would’ve been more vocal and willing to let people in.
What I learned about empathy
I remember shortly after being diagnosed, I was in gym class and suffering a low or high (I can’t remember now). Regardless, I was definitely not myself. I remember having a fit of rage and throwing a basketball aggressively at a wall. My gym teacher removed me from the situation. I was barely a year into type 1 diabetes when this happened.
I crossed my arms and stomped in the direction she pointed out.
She told me to go shoot hoops in the corner by myself. I told her I had diabetes and needed to see the nurse. She didn’t believe me. She didn’t call anyone. She didn’t let me go. She wasn’t informed, and I definitely suffered that day because of it.
I don’t remember my schools ever having a large part in my management, even when I was in elementary school.
With type 1 diabetes, I felt very alone for most of my childhood, no matter how many friends I had or people that loved me. I felt like no one understood or wanted to. I felt like a burden.
Now I know that I didn’t know how to talk about it. I didn’t know how to ask for support or what I needed. I didn’t realize I was deciding how people would react to me before I let them. I didn’t know how to be the friend I needed for myself.
How could I ask others for what I needed when I didn’t know what that was?
Diabetes can be a very isolating condition. To people who don’t know you have it, it remains invisible unless you’re suffering that day around them from a high or low blood sugar level. Anyone dealing with the constant challenge of diabetes deserves to be supported and given the empathy they need to properly manage it.
With empathy comes understanding. And with understanding comes the ability to be vocal about what you care about.
What I want you to know
When it comes to type 1 diabetes, I have faced many challenges that I have just touched the surface of in this post. What I want young people with type 1 diabetes (T1D) to know is that they can ask for support, whatever forms they need, whether it be to help with day-to-day injections, help from their teachers about how to talk about the disease, help from their parents about letting their teachers or friends parents’ know what type 1 diabetes requires and what their role is in helping you, and so on…
You don’t have to be the only one managing it. Everyone in your circle should be able to talk about it and help support you along your journey. It’s okay to ask for this type of support from those whom you love.
There is no loss of power in asking for help. There should be no shame or embarrassment in telling people about who you are. Knowing and accepting yourself are true gifts in life. Knowing when to ask for help is a strength. It shows that you are powerful. It shows that you recognize the values of love, support and teamwork.
Let me restate — no one is in the T1D battle alone — at least, you don’t have to be.
Whatever lessons or challenges you face as a parent of someone with T1D, a loved one of someone with T1D, someone managing T1D, or just someone who wants to know more about why their co-worker sometimes beeps in the middle of meetings, ask questions. Ask what your role is. Ask how you can help support someone with T1D. Be an advocate for those whom you love with T1D.
Make efforts to be aware. Be vocal. Share information. Raise awareness. Children with type 1 diabetes will benefit greatly from strong communicators. And they need to know how to communicate themselves. Help to equip them with these tools early in life so they can live a better life with the condition sooner.
Keep talking about it. The more you share, the better you’ll feel. (I’d argue this applies to all things in life.) Don’t let silence overshadow your journey with this condition. Let people in, let your feelings out and let information about T1D spread like wildfire.
And enjoy your regular scoop of ice cream with the appropriate insulin dose to match. Ice cream isn’t a problem for people with type 1 diabetes. It’s the lack of communication surrounding the condition that impacts so many kids’ development.
Talk about T1D. Just talk. (You’ll be so glad you did.)