Hello friends. We want to share with you a powerful story of living with diabetes from a dear friend of MNU. Originally posted here and written by Michelle Boise, the subject graciously allowed us to give our community her deeply personal insight into this chronic disease with her courageous story. Thanks Jen!
Jennifer Stilson Fleece has had Type 1 for 30 years and recently joined the council at Beyond Type 1. She was diagnosed in the 80s at age 16 in Spokane, Washington and speaks to us about the isolation she experienced having the chronic condition. “I didn’t know another diabetic,” she says. “I didn’t feel like I connected with any of the diabetes educators either. They didn’t have the disease, so how could they really understand what comes emotionally and psychologically with diabetes — especially when you’re young and just trying to figure out who you are and how you’re going to deal with this for the rest of your life.”
Today she is Vice President of Music and Talent Relations at MTV where she oversees brand partnerships with artists for the channel. Prior to MTV she worked at the Late Show with David Letterman, The Jon Stewart Show and VH1. She was working with Nick Jonas’ team on the MTV’s Ultimate Fan Experience when she learned about Beyond Type 1 and realized she wanted to become involved with the Type 1 community, recalling what it was like to have Type 1 as a teenager. “Everyone in my school thought it was akin to cancer and people didn’t know what to say or how to react when I was diagnosed,” she says. “I retreated into myself, because I just wanted to be ‘normal.’ High school is hard enough. Throw in a disease that sets you apart from everyone else? Forget it. I carry a lot of regret about going into denial, but I did.”
She goes onto say that college wasn’t any better. Very few people even knew she had T1D. She would take shots but didn’t check her numbers frequently, if at all. Being in a sorority added pressure to fit in and further perpetuated the hiding of her condition. “After college, I moved to New York City and the denial continued as I was already so far down the path and caught up in my career. I didn’t have time (or make the time) to think about it,” she says. “There were many occasions I’d wake up in the morning and I’d really try to be a ‘good diabetic.’ I’d have the best of intentions, but inevitably, I would fall off the wagon and struggle.” She adds, “I still push myself toward acceptance and remind myself this isn’t a death sentence. I’ve led a great life that has afforded me so many amazing opportunities and diabetes has never held me back. But sometimes it’s easy to forget. We all have our weak and vulnerable moments.”
Recently, she’s had to undergo eye surgery for diabetic retinopathy. She speaks about the emotional difficulty of the surgery and the healing that followed. Despite this though, she claims there’s a silver lining. “It felt like it was a powerful message to embrace this, be positive and grateful for the advancements in treatment and, most importantly, that it’s never too late to start fresh.” And it was because of this surgery that she formally told her employer that she had Type 1. She says her boss was wonderfully supportive though, and she was given all the time she needed to recover. “Some days are better than others,” she says. “I’m still trying to figure it all out but letting colleagues know is a great start. Turns out, it wasn’t so scary after all; as a matter of fact, the world continued to spin on its axis!”
This was a big step considering that in the past her description of diabetes to a handful of people was compared to “having a zit on [her] face.” “I didn’t want a pity party,” she says. “There have been a couple occasions when I’ve been in a meeting or at a performance and I felt shaky and dizzy and I needed to treat my low. I could have asked for help, but I didn’t.” Her husband, Greg, on the other hand, has a deep understanding of her condition, sometimes sensing a low even before she does. “He stocks the fridge with OJ,” she says, “and on vacation he makes sure we have a room near a vending machine or he loads up our bags with peanut butter and candy (Starburst is pure magic). We’re on Dexcom Share together now, and when I’m HIGH, he’ll shoot me a text with a Snoop Dogg photo.” She laughs. “He’s my greatest supporter; it’s unreal sometimes.”
When I ask her what “facing diabetes” means for her, she tells me that being more vocal is the start of that journey. “It means accepting it to my core and being okay with whatever that means,” she says. “It also means taking care of myself and being diligent about testing but also trying to help others who face burnout or fatigue. I don’t want any kid to feel the isolation or fear I did.” She now wears an Omnipod with silly stickers given to her by her husband. “Before, I never wanted something attached to my body as a reminder of my diabetes, but these next decades are critical and I want to lead a healthy life,” she says. “You get to a certain point when you release your stubborn tendencies and denial in favor of your health. And everyone is on their own timeline when it comes to that. It just happened to take me a lot longer.”
She talks about her last A1C being 9.3 and the psychological implications of feeling like you’re failing coupled with the strong desire to sweep everything under the rug. “You beat yourself up,” she says. “You say, ‘I suck at this.’” But as she says this, you can hear in her voice a determination and a hopefulness. “I know that there will be a learning curve with not only the pump but all of the things that come along with my decision to share my story, but I’m ready for it. And hey, not having to hide in smelly bathroom stalls to test my blood sugar or take a shot is an added bonus I never expected to be so happy about!”
Read Jen’s first blog, “Confessions of a Bad Diabetic” on MNU.
For more information on Type 1 diabetes, visit beyondtype1.org.