What coming out taught me about living with T1D and the path to mindfulnes.
By Peter Friedfeld
I’d like to tell you a bit about my journey. First, you have to understand something about me: as a lifelong hypochondriac, I always ‘thought’ I was sick. So imagine my surprise being diagnosed as a person with diabetes, not once, but twice. The first time was in 2014, right after my 55th birthday when I was diagnosed as Type 2. Then two years later in 2016 I was re-diagnosed as a Type 1.
I’ll never forget sitting in the office of my new Endocrinologist when he leaned over his desk and said those words that I feared. “You are a Type 1 Diabetic.”
As he pulled out two boxes he said:
“You inject yourself with this every morning, and you inject yourself with this at every meal.”
— I asked, “For how long?”, thinking he’d say for a week, a month… And looked me in the eye and said ...“for the rest your life!” That’s when the gravity of being diagnosed with Type 1 began to sink in.
What I eventually came to understand is that taking my daily injections would be the easiest part of managing this disease.
My New Normal
In those early days, I was scared to be alone at night and not sure if I would wake up in the morning. After two years of finger pricks, I finally started to use technology (reluctantly) to help better manage my blood glucose. I remember my first night wearing my CGM sensor —which would wake me up if I went low overnight. I explained to my husband Patrick that we were in this together, and when my sensor goes off, I may need his help, especially if I’m experiencing a low, scared that I would sleep thru my alarm. Sure enough, that first night, my sensor went off and I hear Patrick wake up and say, “ALEXA OFF!” and go back to sleep.
But in all seriousness, my husband has been incredible, and he is just one of the many people whose support has helped me successfully manage living with Type 1 diabetes.
I struggled those first few weeks after diagnosis. I would go out with friends, unable to tell them the truth about my diagnosis, and hiding my new diagnosis. I felt isolated, alone, scared, that I had no future, no ‘normal’ life ahead of me.
But these feelings were somewhat familiar, reminding me of a time, 35 years earlier, when I was struggling to come out as a gay kid.
This feeling of isolation —that once I ‘disclose’ who I am I will forever be ‘labeled ’ by others. I didn’t want to be thought of as Type 1, just as I didn’t want to be thought of as gay. However, my coming out back in the 80’s taught me some powerful lessons that I would use on my new diabetic journey.
Learning from the past life challenges
Coming out was a real struggle for me, much of which had to do with my own insecurities and hiding who I was. The secrecy had taken its toll. I was filled with anxiety, unsure of myself, and uncertain of my future. I knew I needed to reach out to find other people ‘just like me’.
In 1987, I left the sheltered world I grew up in on Long Island and moved to NYC , to what was then the heartbeat of gay life in NYC, at the intersection of Christopher and Bleecker Street.
In finding community, I felt an instant connection, the sense of belonging and acceptance was empowering. I had no idea that this process of ‘finding community’ would provide the building blocks that would get me through a life altering diagnosis decades later.
The 80s were a unique time in the struggle for LGBT rights (Q was not part of the acronym then). It was before the internet, before Instagram and Facebook, everything happened IRL. We found collective strength in ‘community’ that we created out of necessity . It was a time when gay culture and awareness was just beginning to evolve in a more public way. I was also living in ground zero of the AIDS crisis in America—where our community literally had to fight for our lives. As our friends and loved ones died, we shifted from connection to action. And it was in those very dark days, I learned there was strength in numbers, that organizing began on the streets and there was power in the ballot box. We could change the world by being open with who we are, by educating our friends and family, to engage and not isolate. In the process, I learned how to be an Advocate – and that I could help raise awareness only by becoming visible first.
Ultimately, through my connection with others and in finding my own voice, I learned to be proud of myself and comfortable in my own skin. The only limitation I had was the one I created for myself. While it took me me a while to find my voice, it was not something I did alone—many were part of my journey.
Finding myself again
25 years later, being faced with a new challenge of my T1D diagnosis—I drew on the strength of the lessons I learned, and eventually it became clear to me that I would need to come out once again. I knew I needed to find my T1D community, and embrace being a person living with diabetes.
Diabetes is often referred to as an invisible disease. I hear, “...but you don’t look sick”, just like I heard, “but you don’t look gay”.
I started searching online —and I read an article about Yoga and Type 1, written by a health coach Lauren Bongiorno . Lauren helped me understand that I could live a happy and healthy life and take control of managing my disease.
Lauren connected me to Erik Douds, a global adventurer who was biking and hiking around the world. I realized if Erik was able to bike 3000 miles across America, I should be able to manage to safely bike around my hometown.
Both Erik and Lauren and so many others taught me how important it is to be able to take care of myself—and to have the confidence to be able to do that. They all had my back and they opened my eyes to the power of the T1D community. A community that has since connected me to so many -- proud T1Ds and allies.
In early 2020 , during the scary and difficult days of COVID-19, I felt this same sense of isolation and disconnection that I experienced earlier in my life. I was anxious, uneasy, and unsure of my future . Once again , my past experiences would help me pave a new path. I found an online class on ‘Meditation and mindfulness for Type One Diabetics’ offered by Sam Tullman. Through this class , I began to understand the profound impact these practices could have on all aspects of my life. I began a weekly, then daily sitting practice with a Sangha, a community of individuals coming together for a common purpose.
At the core of our mindfulness practice, we cultivate compassion, non-judgement, curiosity and acceptance, a beautiful way to engage in today’s world. Viewing life through this lens, it’s easy to realize the importance of embracing and celebrating each person’s uniqueness. When I consider ‘Pride’, these words resonate deeply with me–compassion towards oneself, refraining from judgement and accepting of ourselves and who we love . My mindfulness practice feels like a new chapter being written , informed by prior experiences, leading to new understanding and connection in a profound way.
My story is only one story
Today, 1.25 million people in America are living with Type 1 Diabetes, and every day an additional 100 people are diagnosed —at least 40,000 people per year —it’s a staggering number of lives that are changed forever.
When it comes to advocacy and education today, I lean on those early years coming out as a gay kid. Only by being visible can I affect the change I seek. I am passionate about talking to others about living with Type 1 diabetes, , proudly wearing my CMG and identifying myself as a T1D. (Yes, I have many self-identifying T-shirts—T1D Pride is my favorite!). I love connecting, learning, and sharing—and being part of a community that is stronger than any individual voice.
For so many, our lives are filled with frustration, burden, and struggle. We need insulin every day just to stay alive. Insulin is a life-sustaining drug, but it is not a cure. We need a cure. And until that day comes, we need to help each other live the best life possible. It is our responsibility, to ourselves and to the community we created and are part of.
As for my husband Patrick—when we exchanged our vows, we said “for better or worse”. Well, my goal is to somehow make this experience part of the ‘better’. His support since day one has been unconditional. He lives each day as the life of a Type 1 partner—watching over me, working with me, making sure I am safe and loved.
Finally, I recall asking my asking my doctor a question that many of us asked when we’re faced with a chronic illness or life-changing disease “why me?” My doctor said, “Peter, it’s just your thing.”
At that moment, I thought I was alone and isolated in my battle with my new LADA diagnosis. But the reality was once I learned to open myself up to others and to embrace community— a lesson I learned so many years earlier, it was no longer ‘my thing’. Today, 10 years into my new life, I choose to make it a positive experience: to support those who struggle, to allow myself to be supported, to learn, to help create and foster community, and to live a life with ease, and share with others on this journey.
