Diabetes And… The Impact of Stigmas on Mental Health
Editor’s Note: In November 2020, Beyond Type 1 and our friends at Insulet, makers of the Omnipod Insulin Management and Delivery System, hosted an online conversation around the many things we live with beyond and alongside diabetes. You can still join in the conversation online by reading others’ and posting your own #DiabetesAnd experiences using the hashtag #DiabetesAnd.
Below, we hear from Ebbe Silva, the founder of XLBiking.com (available in English, Swedish, and Portuguese) who lives with type 2 diabetes, about his experiences with #DiabetesAnd stigmas. This piece is also published on Beyond Type 2, but Ebbe’s perspective brings something to learn for everyone in the diabetes community.
My diagnosis story
My eye doctor saved my life. I’ve always worn glasses and was usually happy when the time came to change to a new frame, but during a routine eye exam, my prescription change was drastic. “Are you diabetic?” the doctor asked. The question was surprising. My answer: “not that I know of!”
While now I am a family counselor, my previous work had me flying across the globe several times a year. Different time zones, cultures and food habits made it difficult for me to stick to a consistent diet. Sure, blame the work, right? Not so fast! I had made that the perfect excuse for comfort eating! It was sort of an unwritten contract with myself—I never liked smoking or indulging in too much alcohol, so I’d eat instead! Plus, I love cooking! I learned later that with type 2 diabetes, food and eating themselves are not the problem. It was just how I did it!
“I suggest you get yourself checked for diabetes,” said the doc, waking me up to reality. A few months later I got the diagnosis—type 2 diabetes. According to my primary care doctor, I had been with diabetes for a long time, but completely unaware. Luckily, I didn’t smoke nor drank in excess and, when at home, I did walk quite a bit for exercise. I like goals, and the diagnosis gave me just that—a concrete target to hit! Life will be different from now on, I thought, and that became true in many ways.
Dealing with the stigmas of a new diagnosis
Here in Sweden there is still a fair amount of the old worldview that type 2 diabetes is said to be the disease of the “fat and lazy.” Beyond the general population believing this, when it comes to health treatment, some doctors don’t consider family history, genetic predisposition, other possible causes, or lingering and underlying diseases. Instead, many simply state, “You’re fat and that’s a disease that costs much to the government—lose weight!”
Friends start looking at you differently, and one even risks losing a job as did a 24 year old Swedish young lady years ago, when a potential employer at an interview said, “I can already tell that you’re going to be absent a lot. Your being overweight will cause you to be sitting around eating candy… You have the right qualifications, but…”
Because of the assumptions and stigmas I was facing, I struggled in silence, and that did not help me. I had to find something I was passionate about so that I would stick to it and keep my blood sugar levels healthy. The answer came with two wheels and a lot of fun! The simple bicycle!
Little did I know that the cycling culture and the cycling industry are amongst the harshest ones towards overweight people and folks with diabetes. I was venturing into the realm of the supremely fit and lean types. How dare I disturb their peace with my voluminous body in clothing only they should wear? I thought to myself, “It’s on!” Everyone has the right to ride a bicycle on their own terms and it shouldn’t be up to a certain group of “Velominati” to decide who does it right or wrong.
Making my own way in bicycling
I then decided to share my journey of cycling as an overweight person with diabetes on social media, and XL Biking was born! Well, 5XL biking to be precise, which was my t-shirt size at the time.
Soon others joined in and we began inspiring and motivating each other online. As the group grew, we noticed that more people from different walks of life were feeling left out and mistreated by the cycling community and cycling industry. Folks from the LGBTQ community, people in the Autism Spectrum, women constantly bullied in cycling clubs due to body shape and weight and many others.
I decided then to change the meaning of our name. XL Biking now means that our group is Extra Large so it fits everyone! Our logo was then created, the big letters reflect size and modernity, the blue background is a homage to Aspergers Syndrome (two of my children are in the spectrum), the lively colors of the word “biking” stand for diversity, tolerance, respect and love. Finally, the logos round shape is just like us: round! A simple touch to say that we have kept humor and most importantly: We are not militant with the negative, but active with the positive!
Life with diabetes is always challenging, but now somehow it was also cool! I’ve found encouragement in the countless messages we receive from other people with diabetes that could relate to our daily struggles! Words of support, acceptance, motivation, love and cycling joy were streaming in, and helped me a lot with my mental health! I had suffered from depression for quite a while, but suddenly found myself encouraging others too! Looking at the glucose monitor was no longer a burden, it became a tool! Even my fluctuating weight wasn’t keeping me down, we came with challenges in the community and put together a team! This year we cycled all the distances of Sweden’s greatest amateur cycling event: the Vätternrundan—and, I got my first cycling medal!
The memories of the stigma, the prejudice, people shouting at me for being fat on a bike, the bullying and the laughter that caused me to want to disappear from the face of the Earth are still there. I still must do a great deal of mental gymnastics before I leave the house to go biking. Sometimes a tear or two still tread the known path down my cheeks. But some of them land on a smile these days.
Diabetes and cycling have showed me the way to a new life, a life of possibilities! Living an active life has nothing to do with body shape, size, diabetes, or the like. It is rather an active conscious choice everyone has the right to make! I and XL Biking are here to help society understand that and to motivate and Inspire others to do it! The simple fact that I’m sitting here today sharing this with you is the impossible made possible—Just believe!
Ready to share your #DiabetesAnd story? Join in the conversation online by reading other’s and posting your own #DiabetesAnd experiences using the hashtag #DiabetesAnd