Why Type 1s Need to Advocate for Type 2s
Over 460 million people around the world have diabetes. Still, people with Type 2 diabetes feel stigmatized by those with Type 1 within the community. Knowing the rifts that exist between the Type 1 and Type 2 communities, T1Ds like health coach Kelly Dawes are aiming to do their part to heal the divide. Read her perspective on why it’s important for Type 1s to advocate for people with Type 2 diabetes.
How long have you been living with Type 1 diabetes?
I was diagnosed in 1981 after going into diabetic ketoacidosis (DKA). I was 12 years old and hospitalized for weeks, my mom thought it was the flu. We knew nothing about diabetes, let alone Type 1. I learned how to inject insulin, animal insulin — people with diabetes still used pork and beef insulin then. I was told to monitor my blood sugars by peeing on a stick and looking at a range of colors. Meters were not available yet.
Still in the hospital, I had to attend a class for Type 1 Diabetes. Scolded, a nurse told me I’d be embarrassed at school if the ambulance showed up because I had a low blood sugar. There were many blame, shame, and fear tactics used back then. I’m disgusted when I still see it now.
I currently manage my diabetes with multiple daily injections. As a kid, it was 1 shot a day — not nearly enough coverage. I wore an insulin pump for years, but now I am back to injecting, and I am wearing a continuous glucose monitor. In the past, I would finger prick to check my blood sugars up to 10 times per day. The other way I manage my diabetes is through regular exercise. Both cardio and resistance training. I’ve been told by doctors that exercise is what kept me alive. When I was diagnosed, I was told I would live for 20 years. I rebelled by taking chances, doing things I was not supposed to do. I hated being given limitations so I pushed boundaries, one of which was boxing. Boxing helped stabilize my blood sugars and kept them in a decent range. I remember my first A1c in 1989, it was in the 6’s! Over the years I heard many stigmatizing comments towards people with Type 2. In reference to how Type 1 and Type 2 are different because T1Ds didn’t cause our disease. Also, Type 2’s have a chance to change their circumstances; there was always a shame factor involved.
As a person with Type 1 diabetes, why is it important to destigmatize Type 2 diabetes?
I’ve worked with people with diabetes since the ’90s. I relate well to other people with diabetes and I like to educate people. We have very similar struggles. When it comes to Type 2, they’ve gotten a bad rap for a long time. It reminds me of the nurse in the hospital who scolded me before I even did anything wrong. People say things as if they know what they are talking about or know what it feels like. The wrong info has been out for too long. There is evidence-based research out there now that shows diabetes can be caused by a multitude of factors and it’s not the fault of the person with Type 2.
We all deserve dignity and compassion. When someone has been diagnosed with arthritis, cancer, anxiety, do we respond with blame? Do you ask those people “What were you eating?” Or, do we show them compassion and kindness? I wish we could erase the stigma. It affects us all, every type of person with diabetes.
Tell us about your work with people with Type 2 diabetes and what you’ve learned working with this group of the diabetes community.
I worked for several years in the dialysis field and I became a registered boxer during this time. I spent a lot of time in the boxing gym after work. I loved exercise and the benefits that came with it so I became a personal trainer.
I earned my certification as a Diabetic Educator and also started a fitness product company. I learned so much in the medical field. Many of our dialysis patients had diabetes. It was an eye-opener for me. In fitness, a large number of clients are being diagnosed with conditions, most being prediabetes, and diabetes. They are reaching out for help. They want to start exercising. I teach with compassion and encouragement. I can’t wait to work with them, to sink my claws into them. We get each other like we speak the same “language.” When I share my story with them, they seem to relate. They also seem encouraged to start their exercise journey for health, but also to see someone who has lived with diabetes for almost 40 years and is still going strong. I learned that people are intimidated by gyms or by the idea of exercise. So I simplify it. You don’t need to lift heavy or sprint to reap the benefits. I love seeing the changes in people, it is empowering. I am drawn to people with diabetes. I want to help them feel better, inside and out. We are in this together.
How can the Type 1 and Type 2 communities come together?
Social media is a good source. I hope more T1Ds and T2Ds join together for blogs, podcasts, and similar things. Open-minded people working together for the same cause. Speaking about their journey and being accepting of the other’s. Education helps, and we need to educate everyone. Joining together and educating each other on “our version” of diabetes is a good direction. There is another important factor involved – age. We need to merge age groups. Social media has a lot of young voices. Sharing, learning, collaborating. It would be great to see a bigger variety of ages and experiences. There are many people with diabetes over the age of 50 and 60. I would like to see more of this age group addressed and included in social media, interviews, and websites.
We’re one community because we have more in common than not. The similarities would be frustration. Also, both groups struggle with depression and anxiety. Trying to manage crazy blood sugars can make anyone anxious. The what if’s: being afraid of dying, living without a limb, going blind. We share struggles with the “blame game” and the “diabetic police.” Being asked what we ate or if we took our meds when our blood sugars run high, as if it’s our own fault. We share the cost of this disease: financially, mentally, and physically.
Diabetes technology is rapidly evolving. I strongly believe that every Type 2 should have access to CGMs and insulin pumps, yet this isn’t the case. Jumping through hoops, having to get pre-authorizations to prove medical necessity, outrageous and unaffordable co-pays stand in the way of people with diabetes having access to the tools needed to manage their disease. Sadly, the same can be said for insulin. Our disease is expensive. It costs more in the long run if diabetes is not well managed. To manage it well, we need the medications and technology regardless if someone is Type 1 or Type 2. There are Type 2s who manage well with a blood sugar meter and metformin, but there are others who require more. If someone is diagnosed as a diabetic, they should absolutely have access to an endocrinologist, a diabetes care and education specialist, and a registered dietician. They should also have access to the tools available. The technology should be available to all people with diabetes, as there has been enough research and clinical trials to prove the benefits.