The Emotional Journey of a Diabetes Diagnosis

The Emotional Journey of a Diabetes Diagnosis

Read time: 5 minutes

  • Diabetes may be a physical chronic condition, but the emotional toll it can take is just as real as its effects on your body.
  • Whether they’re a result of perfectionist tendencies, healthcare system challenges, or even just everyday stressors, burnout and distress are part of the emotional journey of diabetes management.
  • To stay strong throughout the journey, it’s important to not only find people who support you and your health goals, but to also actively support yourself along the way.

Picture this: You’re one week away from your 32nd birthday, and you want to be excited about your upcoming party, but all you feel is fatigued and run-down. You also can’t seem to drink enough water to quench your thirst, and you’re concerned about how rapidly you’re losing weight lately. Then, on the day of your birthday party, you realize you can’t keep your cake or celebratory drinks down, and your exhaustion is worse than ever. After a few tests at the doctor’s office, you discover that you have type 1 diabetes—and you suddenly find yourself overwhelmed by a rollercoaster of emotions: shock, denial, anger, guilt, anxiety. What now?

Navigating a New Normal with Diabetes

A type 1 diabetes diagnosis means your body is incapable of producing insulin to regulate your blood sugar, requiring you to take insulin injections to keep your levels stable.

While it’s not uncommon to experience a “honeymoon phase” in the immediate days and weeks following your diagnosis—meaning a few remaining beta cells in your pancreas continue producing some insulin for a temporary period, seemingly suggesting you don’t need to dose it yourself—this time is usually one of adjustment and acceptance as you get used to new medication needs, doctor appointments, and numerous changes to your day-to-day routine.

All of these sudden changes to your lifestyle can take an emotional toll in what’s known as diabetes distress, or the feeling of being overwhelmed by the relentless, chronic nature of diabetes, from daily self-management and the possibility of long-term complications to the stigma and discrimination you might face from both loved ones and the healthcare system.

Diabetes distress can fluctuate over time, perhaps peaking soon after diagnosis, when you make certain changes to your treatment regimen, or even during otherwise stressful times of your life. It can also manifest in several different ways:

  • Powerlessness: a broad sense of feeling discouraged about your health—No matter how hard I try to manage my diabetes, it will never be good enough.
  • Management distress: disappointment with your self-care efforts—I don’t give my diabetes as much attention as I probably should.
  • Hypoglycemic distress: fear of low blood sugar incidents—I can’t ever be safe from the possibility of a low blood sugar event.
  • Negative social perception distress: concerns about possible negative judgments from others—I have to hide my diabetes from other people.
  • Eating distress: concerns that your eating is out of control—Thoughts about eating and food control my life.
  • Physician distress: disappointment with your current healthcare professionals—I don’t get the help I really need from my diabetes doctor.
  • Friend/family distress: a perception that there’s too much focus on diabetes amongst your loved ones—My family and friends make a bigger deal out of my diabetes than they should.

To help you figure out your own level of diabetes distress, use these online diabetes distress assessment scales.

Regardless of what it might look like for you, diabetes distress can have a real impact on your health, including your glycemic control, self-care habits, quality of life, and your risk of diabetes-related complications. And, if left unaddressed, diabetes distress can increase the risk of more serious mental health concerns, such as depression, anxiety, and eating disorders.

When Diabetes Burnout Strikes

Even once you’re “used to” life with diabetes, you can still go through emotional ups and downs with the condition.

When work, parenting, or other responsibilities weigh heavily on you, you might start developing a habit of neglecting to eat until you’re physically shaking with low blood sugar. Or perhaps you’ve never quite confronted your phobia of needles, and when your insulin prescription runs out, you tend to procrastinate getting a refill. Emotionally, you might be overwhelmed by a sense of perfectionism, failure, self-doubt, loneliness, detachment, or an overall loss of motivation.

All of these experiences are possible manifestations of burnout, a chronic state characterized by physical, mental, and emotional exhaustion that happens when ongoing stress diminishes your energetic resources. Much like diabetes distress, unmanaged diabetes burnout can lead to several other health issues down the road, including long-term diabetes-related complications and depression.

Finding Support After a Diabetes Diagnosis

The key to navigating the emotional journey of a diabetes diagnosis is to have a solid support system—including not just the people around you (from caring loved ones to a thoughtful healthcare team), but also support for yourself.

In part, that means practicing self-compassion by setting realistic expectations for yourself in terms of your diabetes management and health goals. It also means practicing positive (or, at the very least, neutral) self-talk instead of berating yourself for every “mistake” you make in managing your health. Let yourself mourn the changes to your life; start a morning ritual that brings you comfort and joy; make a mood board of what you want your life to look like; find ways to reward yourself when you do succeed.

To help you cement these self-care practices into your day-to-day, you might find it useful to work with a therapist. The American Diabetes Association (ADA)’s Mental Health Provider Directory and your primary care doctor are both great places to start, or you can look for professionals in your area using resources like Psychology Today and the American Psychological Association (APA)’s Psychologist Locator.

Some possible evidence-based approaches to explore with your therapist include:

  • Cognitive behavioral therapy (CBT): challenging negative thought patterns as a means of changing behavioral patterns.
  • Motivational interviewing: a communication method that guides you to think about your own reasons for why you may want to change or stick to a certain behavior.
  • Problem-solving therapy: a CBT approach that’s specifically designed to help you cope with stressful or negative life experience.
  • Coping skills training: increases your ability to manage various uncomfortable or stressful situations, from phobias to everyday anxieties.
  • Behavioral family systems therapy (BFST): a family-focused approach that helps improve communication and problem-solving within the family.
  • Acceptance and commitment therapy (ACT): disrupts negative thoughts and emotions with acceptance of all feelings as appropriate responses to different experiences, and commitment to changing reactions and behaviors within your control

In terms of social support, remember the importance of community and what it can do to bolster your health, whether you cultivate it within your extended family club or even extracurriculars like cooking classes or book clubs. To find peers who can commiserate with you specifically about the day-to-day experiences of diabetes management, check out resources from the Association of Diabetes Care and Education Specialists (ADCES).

To join One Drop’s community, become a One Drop Premium member and start your self-care journey today.
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One Drop Team
Jul 13, 2022

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