Lyfestories

The Unmatched Courage That Comes From Chronic Disease

A little over a year ago, after resisting the idea for almost a decade, I finally started working with a type one diabetes (T1D) focused non-profit. T1D was already 100% of my life and I hadn’t wanted it to become even more, but after almost two decades with the disease, I gave into the fact that it was my purpose to make an impact in the lives of other people living with T1D. The first few weeks almost broke me down. Every day, I heard stories of people dying from missed diagnoses, from complications, from lack of access to insulin. I had to learn how to never become numb to it, but forge ahead anyway. The work was too important.

Last summer, after absolutely hating the idea of writing a book about living with chronic illness – I didn’t want to be seen as a sick person – I wrote it (it publishes this September!). I realized that I could use my voice to give hope to others, but I was terrified to never be able to get away from people knowing I had a chronic illness. I put myself out there anyway and ended up writing about the superpowers we gain by living with chronic disease. I became the lucky one here – it has been both rewarding and immensely humbling to be able to connect in such a deep way to people who are managing so much. The chronic illness community is indomitable.

Over the years, as constant debates about healthcare, ever-increasing costs of insulin, and clashes with health insurance have become more and more common, all I’ve wanted to do is turn away and not deal with it, but it’s just not a choice.

I have too much to say, too much knowledge of the industry and the system, and too much ability to affect change to be quiet.

I studied federal healthcare policy at Georgia State University and managed to fundamentally change the structure of the healthcare plan of a Fortune 500 company when I caught that it wasn’t going to work for any of its 15,000 employees who lived with chronic conditions. It has been important to me to get involved with the policy that affects us all, and I have become quite the thorn in my local representatives’ side. We can all affect change with our voices.

Like us all, it was what I have been through that gifted me my passion. My T1D story started on Thanksgiving Day when I was ten years old; I ended up in the intensive care unit of Seattle Children’s Hospital. In the months leading up to the holidays, I had lost nearly thirty pounds on a 5’4” frame that didn’t have the weight to lose; multiple doctors told my mom I was doing it on purpose to somehow better fit in with my peers. I have flashes of memories from that time – trying and failing to eat a single scrambled egg but downing 2-liters of Sprite daily. Barely being able to walk up the hill to my school’s gym. Lots of lying around in bed.

At about four o’clock in the morning on Thanksgiving day, my mom tried, unsuccessfully, to wake me up. My family carried me to our old, boxy Jeep Cherokee and tried to put me in the back seat, but I couldn’t sit up on my own. My entire body hurt. So they put me in the way back, the place I always begged to sit but wasn’t allowed to because of the lack of seatbelts, and we pelted down the highway toward the closest hospital, Overlake Medical Center.

Moments after I was carried into the emergency room, a nurse came over to check on me. She smelled my sweet breath, which should have been a dead giveaway to all the doctors who said these health issues were my own doing. She instantly diagnosed me with T1D.

After being somewhat stabilized in the emergency room, I was put into an ambulance and taken to Seattle Children’s Hospital, where I spent two days in the intensive care unit, then another two as an inpatient, learning what had happened to my body, how to check my blood sugar levels, and how to give myself insulin shots, of which I quickly found out I was absolutely terrified.

I practiced giving shots on an orange first, then on my teddy bear. When my next step was to practice on my mom, to give her a shot of saline, I completely broke down. I could do everything else. I could prick my fingers. I could learn to count carbohydrates. I could skip regular soda. At ten, when everything was an adventure, I could adjust to this new life. But I could not hurt my mom, and I could not hurt myself. The nurses tried to explain that this was the only way to keep myself alive and healthy, but all I saw was my purposely shoving a sharp object under my skin and it broke me.

For the first year after diagnosis, my mom still gave me my shots. Gadgets and technology have since made my life easier, but to this day, if my routine changes, if I have to use a new type of needle, if my insulin pump infusion sets change design, you will find me in a puddle of tears, trying to give myself a pep talk that it’s not going to be so bad. It’s never the pain – the needles don’t hurt that much. But the little bruises and scars they leave are tiny reminders that this is never going away; They are visual cues that at the end of the day, shoving these needles into my stomach, backside, thighs, and arms – it isn’t normal. Needles are and will always be a part of my everyday existence. I remain scared of them. I use them anyway.

It got me thinking – how much in my life has probably been affected by that every day practice of bravery? How many other situations have there been where I was scared of the THING but I did the THING anyway, because that was what I was in the practice of doing? I was a blunt, headstrong little kid, but as I’ve grown up, how much has T1D taught me to barrel ahead even more so than I ever could have done without it?

I can confidently say that I am often terrified.

All the time. I take on projects and jobs and life hurdles that no one in their right mind should take on all at once. But T1D taught me how to be brave, how much I can handle, and beyond that, it taught me how to use my voice to fight for what I believe in. I had to learn how to be an advocate for myself, and I’ve been able to turn that into knowing how to be an advocate for others.

Having a chronic illness is not a great thing. There’s no spin there. But the courage we take from it is unmatched, and for that I feel lucky. This disease has forged me into the person I was meant to become – one who can affect change, use my voice to change other people’s lives, and fight for what I know is right.

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