yoocan - Victoria Burns - My Invisible Fear: Living with Type-1 Diabetes

My Invisible Fear: Living with Type-1 Diabetes


Victoria Burns

Introduction & Diagnosis

Type 1 diabetes (T1D) chronic autoimmune disease, a largely invisible disability that requires 24/7 attention. Everything affects your blood sugar: food, sleep, exercise, temperature, menstrual cycle, stress, medication, infections, you name it. T1D is a very expensive disease to manage. Luckily where I live in Canada, people with T1D are eligible for the disability tax credit; but eligibility criteria are tightening, and insulin, our life-sustaining therapy, is not accessible to all.

When I was diagnosed, I had just turned 30. The year preceding my diagnosis was filled with a number of good and bad stressors. I started my Ph.D. in social work, got married, bought a fixer-upper condo, and adopted a puppy. I was also sexually assaulted on Labour day weekend. Two weeks later, I started getting symptoms of T1D. I spent the first semester walking around campus with pants a few sizes too big, frequent yeast infections, constant thirst, and urination. I was eventually hospitalized and sent home the next day with a shiny insulin pen and a glucose monitor – and so my bumpy journey living with T1D began.

Surviving Diabetes Burnout

I’m currently on medical leave and long-term disability for diabetes-related complications. This photo was taken in August 2018 in Rome; my favorite place in the world. What doesn’t show in this photo, is that I was also deep into diabetes burnout. Diabetes burnout is a real phenomenon. It is when you get tired of managing your diabetes and give up trying to treat it, often stopping all medication – which when it comes to insulin omission is deadly. Diabetes burnout is when you make efforts and things don’t get better; you make efforts and nothing is changing; you make efforts and things get worse. My diabetes burnout led to a deep pit of despair, loss of hope, and suicidal thoughts. On one particularly dark day, something brought me to text my endocrinologist - and my journey towards recovery began. She recommended at least a year off work to get my body back on track. That was a hard pill to swallow for this workaholic, but I had run out of ideas and decided it was time to put my health first. The past 9 months have been a gestational period for me – literally a rebirth. It has given me the time to accept my T1D diagnosis and reconfigure how I am going to return to work while respecting my disability.

Moving through Fear

I recently attended my first “Diabetes Camp”, i.e., Canada’s Virtual Slipstream put on by @connectedinmotion.  It was a fantastic jam-packed weekend. One session that stood out was on diabetes distress and burnout. The session was led by Dr. Tricia Tang, and we all had the opportunity to share our biggest diabetes-related related fears. I shared that the complication I fear most is retinopathy. As you can tell from my photo, I wear BIG GLASSES! On the one hand, I have a growing collection of funky frames because I love fashion & design. On the other hand, the thicker frames are better at handling my coke bottle lenses!  Dr. Tang pointed out that it makes sense I fear to lose my eyesight most because I’m an academic; a large part of my identity is tied up in reading and writing. It would be like a pianist losing the use of their hands.  Even though this fear lurks at the back of my mind, it does not overwhelm me. This is, largely, because I have faith that things will work out. That said, I also know that faith without work is dead! I am responsible (i.e., able to respond) to take daily actions that keep my fears in check. In practice, this looks like getting enough sleep, practicing intuitive eating/gentle nutrition, praying and meditating, practicing gratitude, yoga, keeping a routine, jogging, getting outside, reaching out to others, using a Dexcom, and taking my insulin and other medications as prescribed.

Making Meaning out of my Experience

Ultimately, I am sharing my story to raise awareness, educate, and combat diabetes stigma. When I was diagnosed, nobody asked me about the state of my mental health. More emphasis is needed on mental health and the mind-body connection, particularly the relationship between toxic stress/trauma and autoimmune diseases. 

Greater education is needed about the burden of living with T1D, a largely invisible illness. People are still shocked when I tell them I have T1D. Depending on the person, I’m either too old, too young, too thin, or too healthy-looking to have the disease.  My hope is that my story helps to demystify some of the assumptions about T1D—it does not discriminate and can happen to anyone, regardless of lifestyle, health status, or age.

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