What is it like growing up with Type 1 Diabetes? And how do you cope with diabetes in adulthood?
We spoke to expert Kelly Hamann, Endocrinology Charge Nurse, Diabetes Nurse Specialist, CDE and Type 1 Diabetes warrior, about her experiences living with diabetes and providing medical care to others with the condition.
Kelly has some invaluable lived experience, professional expertise and deep compassion for those living with diabetes. Her insights are so helpful – thank you Kelly!
Can you share your story about your diabetes diagnosis and growing up with Type 1 Diabetes? How old were you? How did you learn? How did it feel?
I was fourteen years old and had experienced significant weight loss in a very short period. My bedroom and bathroom were directly upstairs from my parents’ and my mom often heard the toilet flushing at night. As a result, she presumed I was binging and purging because my appetite was enormous but I appeared to be wasting away.
She took me to our flight surgeon (military primary care doctor) and I was in tears within a few minutes. I told her I was eating and drinking all of the time as well as waking several times a night to go to the bathroom.
The doctor elected to check a random glucose on a hunch I may have diabetes. As it turned out, she was right.
Before the lab results were back, my mom returned me to school. A few hours later – when the results were back – she came back to retrieve me. She told me I needed to take a helicopter to the children’s hospital an hour and a half away.
I asked her what was wrong with me and she wouldn’t say, so I refused to go in the helicopter. We fought a bit and she eventually drove me to the children’s hospital. I walked up to the pediatric intensive care unit carrying a pillow and backpack and the nurses all looked at me in shock. Unbeknownst to me, I was in diabetic ketoacidosis, a potentially life-threatening condition, and they were shocked to see me looking so relatively well. I’ve always been stubborn (more so when experiencing hypos!).
Education started right away — I had an IV placed by a nursing student and I vividly remember my first Accu-Chek. I remember walking down the hallway to the payphone bank and making a call to my best friend. I didn’t know what to say, so when she picked up I just said “I’m in the hospital, I have diabetes” and she came to visit the next morning.
I felt confused and overwhelmed. Diabetes looked a lot different in the 90’s: Humalog was a brand-new drug to replace regular insulin and basal insulin did not exist. The early years were NPH (the cloudy insulin!) and Humalog based on a sliding scale and fixed exchange meals.
What were your biggest challenges growing up with Type 1 Diabetes?
Learning how to normalize the role of diabetes in my day-to-day life.
You go through peaks and valleys when you are first learning to manage your diabetes, especially as an adolescent. Sometimes it’s cool, sometimes you pretend it doesn’t exist.
I have a great support in my father who really helped me learn to care for myself and keep me accountable in a supportive way. He prepared my lunch every day and wrote the carb counts in Sharpie on the outside of the bag. He woke up early to cut cantaloupe and scramble eggs for my breakfast so I was steady through the unpredictable morning lows of NPH.
Those who took NPH in the 90’s will know you HAVE to have a mid-morning snack when taking NPH. My classmates were always jealous that I got to eat during third period but I absolutely hated having to force-feed myself that extra meal.
Was it your experience with Type 1 Diabetes that inspired you to become a nurse?
I would say my experience with diabetes definitely shaped my desire to go into healthcare but ultimately my grandmother’s influence guided me to nursing. She worked as a pediatric nurse in the 50’s and 60’s. Her stories, in combination with spending a few summers working in a hospital, really cemented in me that nursing rather than medicine was where I wanted to be as a practitioner.
I remember the interactions with wonderful nurses I had as an adolescent diagnosed with diabetes, my first diabetes educator, Ken, and my diabetes pediatric nurse practitioner, Susan.
I love helping people and soon realized I have a special knack for helping people with diabetes. So that is how I landed where I am today.
Did you ever experience burnout with Type 1 Diabetes? If so, how did you overcome that?
Yes, I had a period immediately following college where I was less attentive to my diabetes.
I wasn’t out of control but I was far from the place where I currently am with my diabetes management.
I think burnout is a very normal thing. Healthcare providers are now doing a better job screening for people withType 1 Diabetes and referring them to mental health providers.
Diabetes distress is a professional research interest of mine and I am happy to see it routinely integrated into holistic diabetes care.
What are your “go to” favorites for managing your Type 1 Diabetes?
I live and die by my Dexcom. In the past I’ve been a pump user on and off but these days I stick to multiple daily injections. With the information that the Dexcom gives me, I’ve been maintaining great blood sugars using this low-er fi technique.
I’m a big advocate for technology use in treating diabetes when appropriate. A big part of my job is helping people with diabetes explore what type of diabetes management best fits their needs.
As far as go-to foods, I always keep apple juice boxes on hand to treat lows; they are at home, in the glove compartment of my car, at work and on the bedside table. I find the juice boxes keep me more honest and help to control portions when I am experiencing hypoglycemia.
What do you think is the most difficult thing about having Type 1 Diabetes?
I think fear of low blood sugar is my biggest worry living with T1 in the day to day.
I always do my best to be prepared but sometimes despite the best planning you find yourself without an emergency source of glucose.
I recently took a vacation to the western isles in Scotland and spent most of the time hiking and climbing in remote areas without phone reception. One of my biggest fears was being incapacitated by hypoglycemia and having no one to help.
I managed the whole trip without incident and made some amazing hikes, all while maintaining tolerable blood sugars. It gave me a lot of confidence to know that I could still undertake those kind of remote hikes while living with diabetes.
I think the other fear that hits a person with Type 1 Diabetes is avoiding complications like vision loss and kidney damage – these are always in the back of your head.
Having been a Type 1 and worked in healthcare in the US and now here in Dubai, do you find there are many differences in diabetes attitudes due to location, culture or accessibility of supplies?
I find that there are certainly differences, but for the most part the people with diabetes that I meet in Dubai could easily be the same as the people with diabetes I’ve met in the US.
There is a smaller range of products available for the treatment of diabetes in the UAE but I don’t find it inadequate.
I do think there is a very large gap in specialized nursing staff to care for people with diabetes here – I’ve not met another practitioner like myself since being here. I have met a few dieticians who are CDEs, but the scope of the dieticians’ practice limits them significantly in the practical delivery of diabetes care.
I hope this changes in the future in the UAE as specialized nursing staff can help fill a lot of gaps in the multidisciplinary care of people with diabetes.
What advice would you give to a young person or adult who has just received a Type 1 Diabetes diagnosis?
I think it’s really important to get in touch with other people living with T1 diabetes. Twenty years ago, this meant diabetes camp! These days it is much easier to network electronically.
There are Facebook groups as well as web-based communities available now to share stories and network with other people who are navigating life with diabetes.
This also speaks to the mental health elements of living with diabetes. Connections can be very therapeutic, especially during stressful times such as diabetes and pregnancy.
What advice do you have for parents of young children who are growing up with Type 1 Diabetes?
It’s going to be okay! Not just for parents but for anyone who enters our consultation room and feels unsure about their diabetes.
I find myself constantly telling people living with diabetes that we will figure out what works together. I’m often able to share personal experiences – including my failures – which seems to help develop the trusting relationship we have.
Having lived with this condition for 20 years and worked with it for 8 has given me so many opportunities to help others navigate life with diabetes.
What are your experiences of growing up with diabetes, or parenting a child who’s growing up with diabetes?
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5 Essentials for Managing Type 1 Diabetes at School
Relieve some of the anxiety you feel whenever your child with Type 1 Diabetes heads to school for the day.
You'll find tips on educating the teacher and nurse, making emergency snack boxes, traveling on the school bus and more.