Finding Hope After a Diabetes Diagnosis
Learning you have any chronic illness can be overwhelming and difficult to accept. Finding meaningful support can help you cope with a diabetes diagnosis.
The cascade of emotions a person might feel after receiving a diabetes diagnosis is normal — and can last weeks, months, even years.
For some, these emotions can contribute to depression, which is two to three times more likely to occur in people with diabetes. For others, there is some processing and contemplation, but everyone handles it differently based on their circumstances and personality. For example, someone who learns they must begin daily shots or other significant treatments might have more difficulty accepting their new diagnosis.
“Being diagnosed with a chronic illness is not easy information to digest,” said Dr. Susan B. Trachman, a psychiatrist who specializes in helping people make sense of unexplained medical symptoms that haven’t been assigned a diagnosis. “Patients may struggle with their identity and self-esteem. Patients with chronic illness must find new ways of coping, as well as make lifestyle changes to manage their diagnosis.”
She said that the betrayal of one’s own body can lead to common reactions like guilt and denial, though some people respond with acceptance. Several research studies, she said, liken having a chronic condition to the grieving process.
Whether the diabetes diagnosis is a complete surprise or the final result after a long process of navigating symptoms, most people with diabetes feel a variety of emotions when they find out about their diagnosis. Some might even compare this to the grieving process after a death. Dr. Kubler-Ross originally identified stages of grief people often endure after a death, and since then, others have used those stages to describe grieving processes after other significant events, such as being diagnosed with a chronic illness or going through a divorce.
Here are some of the stages of grief people with diabetes might go through after receiving the diagnosis and in the years to follow.
Shock and denial
When Krishna Kaliannan (now the founder of Catalina Crunch, a low-sugar, high-protein snack and cereal line) was diagnosed with type 1 diabetes at age 18, he remembered being “shocked.”
“I was an athlete in great shape, and wrongly associated diabetes with people who were overweight and older,” he said.
Rachel Kohls, a nurse and diabetes care and education specialist at Texas Diabetes and Endocrinology in Austin, said many of her patients experience this emotion first.
“Some are in denial and disbelief, maybe because they don’t have any diabetes in their family. Some are scared and become emotional,” she said. “However, I would say most of my patients are overwhelmed at first.”
This stage might last a while, or might be just a few fleeting moments where they are shocked by the news. Trachman gives some examples of thoughts related to denial she’s seen people experience:
“Diabetes is no big deal; there are worse things I could have.”
“But I feel fine!”
“Why bother to care for it? I’ve got to die of something someday.”
“Sometimes, denial can be a healthy defense mechanism,” Kohls said. “It can allow the patient to digest the information and, with time, come to terms with the diagnosis.”
She explained that our minds defend against painful feelings related to the new reality. But when the denial continues for a while, it can lead to poorer health than for those who move past it. “[People in denial] are more likely to forgo a [diabetes-friendly] diet, exercise, and other beneficial recommendations to manage their disease,” she said.
Kohls added that people in denial might not follow up with appointments as well. “I do have a select few that are still in denial months after diagnosis and many that develop disease fatigue years later,” she said.
Kaliannan said that quickly after denial, he became “red-in-the-face angry.”
“When the diabetes educator asked me to stop eating a long list of delicious foods—all the sugary stuff I loved—I was incensed she had the gall to tell me what I could and couldn’t eat,” he said. “I actually decided out of spite to keep eating all the sugary stuff I knew I wasn’t supposed to eat,” which he said he quickly found out wasn’t a sustainable way to live.
Kohls said, “They may think [diabetes] is a death sentence and don’t know what it means their life will look like down the road. They may not want to have to take medicine.”
Sometimes anger is associated with feeling overwhelmed, which comes with diabetes education and the need to make subsequent appointments.
“Imagine being told you have a chronic lifelong condition that is known to cause multiple complications,” Kohls said, “and all you get is a 30-minute initial appointment with your endocrine provider—or even less time with a primary care provider—to answer all your questions about pathophysiology, diet, exercise, medication, impact on your life, work, relationship, financial burden, etc.”
“I’d do anything to turn back time” or “Please God…”. These are common thought processes from people post-diagnosis who are in the bargaining stage, in which they often feel guilt or regret.
“It is important at this stage to remind the patient that sometimes a diagnosis is not the result of ‘having done some things wrong.’ Some diseases are inherited and have nothing to do with poor lifestyle changes,” Kohls said.
This can especially be true with the misconceptions about type 2 diabetes being caused by excess weight or poor food and lifestyle choices. This stage is also where reassurance from a medical team is essential. “It is useful to remind the patient that [diabetes] is a very treatable disease, and with appropriate behavior modification and medication, a [full and healthy] life is achievable,” she added.
A high-quality and supportive medical team, and a personal support system through family and friends, are what Trachman calls “protective factors,” and they play a major role in how a person perceives their diagnosis. Protective factors are conditions or supports that help someone navigate a difficult event, such as a diagnosis, and can also affect how a person moves through the stages of grief and how deeply these emotions impact the person, or not.
“Those seen as most supportive were most helpful in a positive reaction and acceptance of their diagnosis,” she said.
When Robby Barbaro, co-founder of Mastering Diabetes, was diagnosed at 12 years old with type 1 diabetes, he said, “I do remember being quite sad in the hospital and crying about the whole situation.”
People in this stage post-diagnosis often have thoughts, according to Trachman, like:
“I’m so sad.
”What’s the point?”
“I miss how life was before diabetes.”
She notes that navigating this emotion post-diagnosis is quite different from clinical depression. In fact, working through these feelings might even be a sign of progress.
“It demonstrates the person understands the certainty of the diagnosis, which is essential for resolution and progression. There can be a sense of hopelessness, but, like grief, it usually will pass,” she said.
But if it doesn’t, mental health interventions should be considered, and the diabetes medical team should watch for that need.
Acceptance, hope, and even gratitude
Once a person has moved to the mindset that “I can take control and manage this,” and “It’s going to be okay,” they are in acceptance. “Acceptance indicates the patient has come to terms with the diagnosis rather than [seeing it as] an [intruder] to be dreaded or battled against,” Trachman explained.
Some people reach this stage more quickly than others. And for some, they may never feel this way. Barbaro said he was quick to move toward acceptance because his big brother had been diagnosed almost a decade before him, so he’d watched his family navigate the details and challenges.
“I don't remember going through many struggles or different stages. I think I moved into a state of acceptance quite rapidly,” Barbaro said. Around six years later, he said, he moved into a mindset of gratitude for the opportunities his diagnosis led to.
“It was the catalyst that led me to learn everything I could about health and well-being. I believe I am healthier because of type 1 being a catalyst,” he said. “If I didn't have this motivation to be as healthy and insulin-sensitive as possible, I'd likely be eating junk food and creating other chronic diseases in my body, and statistically speaking, I'd be eating myself into a substantial chance of being impacted by our nation's number one killer, heart disease.”
Now a diabetes coach and author of New York Times bestseller “Mastering Diabetes,” Barbaro said that the diagnosis was the beginning of his path and purpose in life. But his support system was essential in that path. “I think I've been blessed to be surrounded by people who don't play the victim card and choose to make the most of whatever is dealt,” he said.
But acceptance doesn’t always mean you have to like your condition. “Emotions around diabetes never go away completely though,” Kaliannan said. “For example, every now and then, I’ll complain in my head about how it takes me twice as long as my wife to get ready for bed because I have to take insulin…and test my blood sugar.”
Tips for navigating the stages of grief
In addition to finding a meaningful support system at home and through your medical team, Trachman has a few tips for anyone working through post-diagnosis emotions, regardless of your stage:
Accessing information so you know your options for support and treatment and what to expect can help you feel more in control
Exercising daily isn’t just good for glucose management but also for your mood
Setting a regular sleep schedule to control inflammation, which is involved in many chronic conditions including diabetes
Using a 10 minute meditation app, as meditation has been associated with improvements in dealing with difficult emotions (Trachman likes HeadSpace)
Seeking social connections (not to be confused with social media), as strong social support is a protective factor
Finally, at any point during the emotional recovery process, reach out to your medical team if you are experiencing difficulty navigating feelings, or if you suspect you might have a mental health condition.