- By Victoria Frances Burns
I recently completed a three-day diabetes skills training that I was not so subtly encouraged to attend by my endocrinologist. It’s my second time around. My most recent hemoglobin A1Cs provided the evidence that my self-care management needed a serious tune up. As a post-doctoral research fellow, I had a busy year travelling to and from several academic conferences and interviewing for a tenure-track position. Adjusting to new time zones, eating different foods, and changing routines is challenging for anyone—especially for a person newly diagnosed with type 1 diabetes (T1D).
A few weeks prior to being admitted to the emergency room with blood sugars of 33 mmol/L (600 mg/dL), I had celebrated my 30th birthday. Up until that point, I had managed to sail through life with no major health problems beyond the common cold and a couple of bouts of bronchitis. When I tell people about the sudden onset of the disease, many suggest that I must have had it for years and not known about it. Luckily, I know this was not the case. Six months prior to my diagnosis, I had a routine blood test done and my fasting blood sugar was normal (4 mmoL/L or 72 mg/dL). What happened? There are many theories about the etiology of T1D but nothing definitive. Diabetes is an ancient, albeit baffling, complex, and powerful disease that affects every organ in the body. Each person I meet with T1D has a unique understanding of their experience. Here is mine.
I was diagnosed with T1D December 16th, 2011. The year preceding my diagnosis was filled with a number of good and bad stressors. I got married to my husband in my home town on the East Coast of Canada. We decided to get married December 31st as we had met at a New Year’s Eve party five years prior in France, my husband’s native country. That May, we had a second wedding in France, bought our first home—a third floor fixer-upper built at the turn of the 20th century. Amidst living in dust, we decided it would be a good time to adopt a two month old puppy. In between the puppy training and home renovations, I had cobbled together three research assistant jobs to help make ends meet.
That Fall, I was starting my PhD in social work. Labour Day long weekend I decided to have a last night out with a girlfriend before classes started. What began as a lighthearted evening ended traumatically—I was sexually assaulted by a stranger. Filled with many forms of fear, guilt, and shame, I didn’t report the assault to the police. I didn’t tell many people besides my husband, a few close friends, and the doctor I saw to do a pregnancy test and screen for any sexually transmitted infections (STIs). Starting school that week felt surreal. I recall being late for my first class as I was rushing from an appointment at the university health clinic. The three-month waiting period between the assault and confirmation of whether I had contracted any STIs was excruciating. I buried myself in my doctoral work.
A couple of weeks after the assault, I started to notice my body was changing. I was getting yeast infections which I never suffered from before. I would go and get an over the counter remedy, it would go away for a week, and then come back. I consulted with my mother (a registered nurse) about the infections and she asked me if I was eating more sugar than usual. I was. I had taken a pregnancy test as I was having cravings for very starchy and fatty foods. The test came back negative. The strange thing was that despite my frequent carbohydrate binges, I was rapidly losing weight. Walking around campus with pants a few sizes too big, I had lost 15 pounds in three weeks. I was worried the yeast infections were somehow related to something I may have contracted during the assault.
I made an appointment with my gynecologist. She reassured me the weight loss and yeast infections were likely stress related to starting my PhD. I didn’t believe her and knew my body well enough to know that these extreme changes were not “just stress.” Increasingly anxious, I got a referral from my family doctor to get some bloodwork done. Two weeks later, I got a call from my family doctor who started the conversation by telling me he thought there was a mistake. My fasting blood sugar was 16 mmol/L (288 mg/dL)—four times as high as indicated on my test results taken six months prior (4 mmol/L (72 mg/dL)). I agreed that it must be a mistake and rushed to the pharmacy to do an over the counter blood sugar test. The pharmacist, a young woman around my age, brought me to the private consultation room in the back. I saw her eyes widen when she read the number, 23mmol/L (414 mg/dL). I recall her words, “this is not normal, there is something really wrong.”
I went home in a panic and immediately scheduled a follow-up with my family doctor who was only available two days later. During those two days, I was obsessively Googling about every disorder and disease associated with high blood sugars. I knew very little about T1D and believed many common assumptions—notably that T1D only happened to children. Being a bit of a hypochondriac, my mind started to go to the worst case scenario. A friend of mine had died a few years prior of pancreatic cancer at age 28—I couldn’t shake the idea that something similar was happening to me.
When I met with my family doctor, he looked perplexed as he went over my blood work. He put me on 500 mg of metformin (commonly prescribed for type 2 diabetes [T2D]) twice per day and instructed me to wait and see if my blood sugars went down. They didn’t budge. The next day, after breakfast, my blood sugars went up to 33 mmol/L (600 mg/dL) and I went directly to the emergency room. I was admitted right away and hooked up to an IV. My parents were coincidentally visiting that weekend from the East Coast for the Christmas holidays. My dad walked into the emergency room and said, “What is a healthy girl like you doing in here?” I was having the same puzzling thoughts. It felt surreal lying on the gurney in a hospital gown with IVs hooked up to me. I didn’t feel that ill. I wasn’t in any pain. I was a bit tired, but nothing out of the ordinary for a first year doctoral student.
After a night of constant pricking, prodding, and repeating the same story over and over to a number of medical residents, I was wheeled into the hallway of the emergency room—my new home for the night. When I finally met with the endocrinologist, it was pretty clear to her that I had T1D, but she said I had to wait for some final blood work to make sure. My A1Cs were 14.5. She was shocked that I managed to function in school the past three months with blood sugars consistently over 30 mmol/L (540 mg/dL). The next day, wearing my blue hospital gown, an orderly wheeled me through the hospital’s corridors to the diabetes clinic. I met briefly with a nurse who showed me how to use a glucometer. She set me up with two different types of insulin and instructed me on what to do if I were to go too low. I felt overwhelmed. I wanted to get an ultrasound or MRI just to make sure there wasn’t anything else going on with my pancreas besides the diabetes. The doctors didn’t think this was necessary and discharged me that same day.
When I got home I knew my life was no longer going to be the same. The next year involved many appointments with various health care professionals to try and get things “under control.” I paid out of pocket to get an ultrasound and MRI for my peace of mind – and they didn’t find anything. All of my STI tests also came back negative—thank God.
A week after I was discharged from the hospital my husband and I were scheduled to leave for an all-inclusive holiday in Cuba for a postponed honeymoon (we had to cancel the year prior after our wedding as my husband had the stomach flu). My doctor reassured me that I would be able to go if I was able to get my sugars “under control” over that next week. I was scared to travel. I didn’t know how my new exogenous insulin-dependent body would react to heat, exercise, alcohol, and different foods. I ended up getting the green light from my endocrinologist, bit the bullet and boarded the plane—letter from my doctor taped in my passport, cooler, and insulin supplies in tow. I felt somewhat reassured going to Cuba, after all they are known for having excellent health care. Making this international trip was symbolic for me. From that point on I decided I wasn’t going to miss out on life because of T1D. That being said, it’s been an emotional roller coaster. No matter how prepared or studious I am, T1D is a game of uncertainty with lots of trial and error.
For the first six months following my diagnosis, I followed my diabetes program like a true academic. I’m a rule follower, but no matter what I did I couldn’t seem to get my numbers right. I quickly learned that I am extremely sensitive to insulin—what is often called brittle diabetes. One unit off would take me into unsafe highs and lows. An avid runner since my early teens, I kept having dangerous lows and had a hard time accepting the idea of constantly eating sugar to survive a 30 minute run. Out of pure frustration, I gave up running. I’d eat a normal dinner, take the required insulin injection, feel full, and need to eat again two hours later as my blood sugars were too low to make it through the night. I started to put on weight and was getting more and more frustrated, angry, and depressed. I blamed myself for not being able to control my blood sugars. No matter how hard I tried, I felt like a failure.
Trudging through the stages of grief
One of the most memorable conversations I had in the early days of my diagnosis was with my family doctor. He was the first person to normalize the frustration, anger, and sadness I was feeling. He went as far as to refer to what I was feeling as grief. The coupling of grief and diabetes seemed strange to me—but he was right. Kubler Ross (1969) famously conceptualized a five-stage model of grief in her book On Death and Dying to explain the complex emotions experienced by survivors of an intimate’s death: denial, anger, bargaining, depression, and acceptance. Over the last five years I had gone through all five stages—and not in a linear fashion.
Despite all of the books I had read and general knowledge I had accumulated about diabetes, the denial of my disease snuck up on me. I began justifying things I knew I shouldn’t be eating. I would try to get my blood sugars under control the week before my follow-up appointment with my endocrinologist so when she scrolled through my glucometer, I wouldn’t look too bad. When people would ask how my diabetes was going, I would respond “pretty good”- even though I had started to purposely keep my sugars high to avoid the burden of checking constantly, bottoming out, or gaining weight. I am not proud of these self-sabotaging behaviours. Thankfully I reached the point where I knew it was time to be honest with myself and others about what was going on—which leads me back to my decision to take three days off of work to attend a diabetes skills training for the second time around. I did not attend the training to learn how to count carbohydrates or make smarter choices at restaurants. My motivation was on a deeper, more emotional level.
At the skills training, the other four members were at least 20 years older and all had T2D. I found it interesting that they were struggling with many of the same emotions that I was experiencing. Similar to me, they didn’t want to burden their families and friends with what they were feeling—after all, as many people would say to me “it’s only diabetes; it could be a lot worse.” Connecting with other people living with diabetes is important to me; not only does it break my isolation, it also normalizes and validates my experience. Today, I know that all I have is a daily reprieve from negative symptoms – whether it’s the highs where I feel starving and in a fog, or the dangerous lows, where I am overtaken by ravenous hunger and my body shakes. Thankfully, these extremes are less frequent than when I was first diagnosed, and a big part of my progress is honesty and acceptance.
Despite all of the ups and downs, I managed to complete my doctorate degree ahead of schedule. With some careful planning, I have reintroduced running into my routine which is medicine for my mind and body. I am training for a 10km marathon and raising money for Team Diabetes Canada. Through my research and connections, I learned it is sometimes suggested that T1D can be triggered by emotional and physical trauma. At the beginning, every insulin injection was a painful reminder of the assault. Acknowledging the link between trauma and T1D makes sense to me and has helped me heal.
In addition to connecting with other people living with diabetes, writing is an important tool and integral part of my treatment plan. It has allowed me to move towards acceptance of my diabetes. About three months after my diagnosis, I wrote the poem included below that is titled “My Invisible Fear.” At the time, I was obviously stuck somewhere between the shock and anger phase of grief. For me, writing is epistemic in the sense that the act of writing itself leads to a better understanding of what I am experiencing. By naming my feelings, and seeing them in black and white, I have been able to move through a lot of my pain.
Combatting stigma and moving towards acceptance
My dietician encouraged me to write this article to educate and combat stigma related to diabetes. As a social worker, stigma is not a foreign concept, but I tend to couple stigma with other issues, such as mental illness, addiction, or sexual orientation—not diabetes. Stigma is fuelled by the myriad of misguided assumptions, judgments, and general ignorance concerning diabetes. People are still shocked when I tell them I have T1D, as they tend to conflate T1D and T2D. Depending on the person, I’m too old, too young, too thin, or too healthy looking to have the disease. The truth of the matter is that stigma is rampant when it comes to diabetes. Stigma keeps people in denial, and when it comes to diabetes, denial is a life and death matter.
From my experience, knowledge alone does not lead to better diabetes control. There is a strong emotional component. I’ve had to work through accepting people’s reactions when I tell them I was diagnosed with T1D at age 30. Their reactions used to trigger many negative emotions. I’m not quite sure what I wanted people to say. I now realize that the problem is not other people’s reactions, but me not being able to accept my disease. True, meaningful acceptance requires rigorous honesty and taking daily actions. It’s been a process accepting my T1D identity and the everyday changes that come along with managing the disease—my new mantra is “progress, not perfection.”
My hope is that my story helps to demystify some of the assumptions about diabetes—whether it’s T1D or T2D, diabetes does not discriminate and can happen to anyone, regardless of lifestyle, health status, or age. People living with diabetes need to feel they have the permission to experience the array of emotions associated with the disease. Related to this, more research and resources need to be put in place beyond biomedical approaches so people living with diabetes have access to psychosocial support and safe spaces to be honest and tell their stories.
The bottom line is that diabetes management comes down to self-care. No matter how sophisticated insulin pumps, pharmaceuticals, or glucometers become, if a person is stuck in denial, they will not have optimal health. My experience has taught me that the key to living with diabetes is crossing the river of denial, letting go of the “why me,” connecting with others, practicing self-love, and imperfectly moving towards acceptance—one meal at a time.
Type 1 Diabetes: My Invisible Fear
People act surprised when I tell them
How is it possible you have Type 1 diabetes?
Aren’t you too old?
You look so fit!
You were so healthy!
You don’t look sick!
Other people tell me to think of it as a “gift”
An excuse to embrace eating healthier
I already did
An excuse to embrace less rigorous ways to exercise, like yoga
I miss being able to run
They tell me that I will learn to live with it
That I will get used to it
That I should not consider it as a disability
That eventually I will forget it is even part of my life
That I am “normal”
I don’t feel normal
What do they know?
I resent it everyday
I didn’t ask for this gift
I thought I did everything to avoid it
But the joke’s on me
Worst of all is that people don’t understand
They tell me “it could be worse”
Of course, it can always be worse
I invite them to walk in my shoes for a day
To embrace my needles
To embrace my counting
To embrace my exhaustion
To embrace my irritability
To embrace my uncertainty
To embrace my frustration
To embrace my isolation
To embrace my resentment
To embrace my fear
- Kubler-Ross, E. On death and dying. New York: Macmillan; 1969.
Originaly published in PLAID By Victoria Frances Burns