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Let me start by saying: I am not here to tell you an inspirational story. I’m just here to share my experience and how that one experience has shaped my views of living with type 1 diabetes (T1D). But before we start, I want to make it clear that I do not have T1D. I don’t have any type of diabetes — although I am no stranger to autoimmune diseases.
I don’t have diabetes but I do have…
In my professional life, I have worked in the research space for nearly six years. I began my career coordinating studies of Celiac Disease at Massachusetts General Hospital. For the past four years, I’ve managed the T1D Exchange Registry.
In my personal life, I have been diagnosed with my own autoimmune ailments: systemic lupus erythematosus (SLE or just ‘lupus’), Hashimoto’s thyroiditis, and Raynaud’s syndrome. Basically, my body is great at attacking itself. Even though I don’t think of my autoimmune conditions as being the same as T1D, I do have some firsthand appreciation for what it’s like to live with a chronic illness.
Over the years, I’ve learned a decent amount about day-to-day life with T1D. After all, between working in research and having several friends who are very open about their experiences with T1D, surely I could get through 24 hours wearing a device, right? But all it took was one event to help me realize that no amount of research experience or empathizing with my T1D friends could prepare me for what it actually feels like to be connected to a device every day.
Wearing an insulin pump for just one day
While attending the Friends for Life conference in Florida this past summer, I had the opportunity to try on an Omnipod for a 24-hour trial period. (Don’t worry, the pod was filled with saline — not insulin.)
After I consented to wear the device, an Omnipod representative and a Registered Nurse walked me through the process as they applied the Omnipod 5 ACE Pump (Pod) to the back of my arm. Instead of insulin, the pod contained 15 mg of saline which steadily dripped into the subcutaneous flesh (body fat) of my arm.
With the pod site established, I was free to go about my day! 24 hours would go by in the blink of an eye! Right? Wrong.
I only made it 12 hours
Every couple of hours, I jotted down my thoughts.
It’s in! I didn’t think I would be able to feel the saline go into my arm, so that’s a weird sensation, but okay. Also, ouch? I didn’t realize the back of my arm was so sensitive. I don’t know what I expected, but it wasn’t that. The saline is really cold — is that how it normally feels? But one hour down, 23 to go! I can do this easy-peasy.
How is something so small so inconvenient, and am I always this clumsy? I have successfully banged this pod on what seems like every door and wall within a mile radius. In the palm of my hand, it seemed so small, but on my skin, it felt like it took up so much space. I think all of the T1D pros at this event must know I am a pod newbie, possibly because I keep looking at the back of my arm. It’s like if I don’t check on it every five minutes, I think it will disappear or fall off. A young kid (Expert Level 1000 — seriously, he was a pro!) schooled me in all things pod-wearing. He also helped me put a fun sticker on, so I had that going for me.
I don’t think I fully considered how my clothing would interact with a device — a privilege of not having to wear one before. The sleeves on my dress are the perfect length to rub against the pod. And putting on a sweater? Impossible. I need an outfit change. I have a whole newfound respect for device users in the T1D community.
I’m in Florida. In July. The sweat is real, and the adhesive is not surviving the heat. The pod is beginning to peel up. If I could stop compulsively touching it, maybe it would last longer. It’s pulling up right at the sides, and I hadn’t realized how much the constant pulling of tiny arm hairs hurts.
After leaving the security of the conference area filled with people who are well aware of T1D, I realize how many strangers are staring at my arm. Isn’t it common courtesy not to stare? Don’t people know that’s rude? One woman with T1D later told me that you get used to the stares. And eventually, the devices just feel like an extension of yourself. That is remarkable to me, as I’m struggling with feeling uncomfortable with the confused looks and the foreignness of a device on my body.
Well, I failed. One misstep getting into an Uber was all it took for the sticker to rip off and the pod to rip from my skin. I know my constant touching of the device probably shortened its lifespan, but I didn’t expect it would be so soon. There it was: the pod dangling off my arm, hanging on for survival by a measly bit of tape. It feels like a physical representation of my failure. I take a deep breath before ripping the other half off.
Wearing this device was just a sliver of life with T1D
It was supposed to be one day. When I started, I had no doubt I would make it the full 24 hours. But I couldn’t even make it past hour 12. I was humbled by my experience in device wearing. When I further consider that being connected to a device is only the tiniest sliver of the daily management of T1D, I am faced with my naivety on how much I know about living with T1D.
November is National Diabetes Awareness Month. Instead of raising awareness about diabetes itself, I want to raise more awareness about you — the T1D community — and the under-recognized hardships you face each day in managing T1D. For all the advances in technology, better treatments, and strides the medical and research community has made — it is you who are the experts on what it is to live life with this disease.
I want to celebrate all of you: the self-teaching, multitasking, health-conquering, technology-wearing T1D magicians. You are amazing.
As a research community, I hope we can continue to humbly learn from your experiences to make dealing with all the daily challenges a little less challenging and to help you continue to live your best life with T1D.
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