Newly Diagnosed with Type 1 Diabetes? 3 Tips from a T1D Therapist Who Gets It!

Erika Forsyth Counseling

I was diagnosed with type 1 diabetes while away at summer camp when I was 12. I remember returning home from a week-long stay at the hospital after having severe DKA (diabetic ketoacidosis) and nearly going into a diabetic coma. Our house was filled with flowers, balloons, and “get well soon” cards. I remember thinking, what does it mean to “get well soon” after being diagnosed with a chronic illness that nearly killed me? Does it mean, “I hope you regain the 30 pounds you lost over the past few months and feel energetic again?”  Does it mean, “I hope you’re able to sleep through the night without waking up to pee, drink water, and do it all over again in 30 minutes?”  Or does it mean, “I’m not sure what type 1 diabetes is, but my grandmother’s aunt seemed to do fine once she had a diagnosis”? I landed on this: most people are unaware of what T1D is, and they’re just trying to send their love, support, and prayers as we grieve this new “thing” in our lives.

As the balloons deflated, the flowers wilted, and the cards were thrown out, my real grieving began. No one really understood what it was like to be diagnosed with T1D and how complicated it all felt. During those days, keeping diabetes management and my emotional turmoil private was relatively simple; routine finger pricks and insulin shots were the norm, and discussions about mental health were rarely broached. I would hear things like, “Go test your blood sugar”, “Did you take your insulin?” and “It looks like you’re feeling better!”

On the outside, no one could tell I was living with a life-threatening, life-altering chronic disease. On the inside, I hated diabetes and did not know what to do with that anger besides attempting to ignore it (the management and my emotions) as much as possible.

Most of the time, I felt overwhelmed by the strong desire for people to know how hard it was to live with T1D and simultaneously yearned to be a normal kid again.

My family did their best to maintain a positive mindset and encouraged both myself and my younger brother (who was diagnosed two years later) to do the things we wanted to do. They did not want diabetes to become a roadblock to sports, academics, relationships, and our aspirations. While I am thankful for their positive attitudes and support, I remember finding it challenging to express any other emotions besides acceptance. I don’t blame my parents, I just did not know how to process it all.

After my diagnosis, my parents encouraged me to attend diabetes camp. I emphatically said, “Not a chance!”  I was not ready to face that part of my identity. It felt “easier” to avoid all things diabetes. However, I didn’t realize how isolated and lonely I felt living with TID until I started volunteering at the JDRF office in San Francisco in my early 20s. What a joy and gift it was to witness, listen, and share experiences of living with T1D that only other T1Ds truly understood. We could guess carbs together for our Friday tradition of cobb salads and cookies. We could cry and laugh about the many esoteric things we experience as people living with T1D. And not surprisingly, as my feelings of isolation decreased, my diabetes management improved.

The great irony in my life is that I went from a teen who “held it all in” to a therapist who finds purpose and passion sitting across from someone (a youth, teen, adult, or caregiver) in the same season of life. Whether you’re newly diagnosed or have been living with diabetes for years, it’s challenging – I get it. Here are three lessons I learned along the way that may be helpful in your journey:

1. Grieve in Your Own Way and in Your Own Time

As a teen, I was not ready to process all of what it meant to live with diabetes. And that’s okay. As a young adult in therapy, I discovered the gift of being able to say, “I’m tough and I’m struggling.” Yes, I can do hard things and sometimes it feels hard to achieve them. Wherever you are in your journey, it’s okay to cry, scream, be angry, sad, and disappointed. Grieve the loss of not being able to eat without thinking about your blood sugar, counting carbs, and considering ALL of the other variables. Grieve the new burden of worrying about having all of your medical supplies, finding (and keeping) good health insurance, managing doctor’s appointments, and getting frequent lab work. Diabetes interrupts our lives constantly. One idea my therapist suggested to me was to write a “Dear Diabetes” letter, revealing all of the hidden anger and sadness I had suppressed for years. It’s pretty powerful – give it a try! But if you find yourself stuck, scared, or unsure how to grieve, please seek help. It’s a process, and there is hope.

2. Seek Community

One of the best ways to receive the validation most of us so strongly need is from others who get it. Many people will attempt to validate the pain and struggle you face upon diagnosis, but their comments may feel hurtful (perhaps unintentionally, but painful nonetheless). Learning how to create emotional boundaries around these types of comments or questions can help protect your heart. Having prepared mantras to tell yourself or statements to inform others can be beneficial. And during this process, when you are ready, it can be helpful to surround yourself with people who understand the nuances of diabetes. Not only can you learn management tips, but you can also find strength in this supportive community. You know that feeling you get when you see someone wearing a CGM, pump, or inject themselves “out in the wild?” It’s restorative. I’m reminded I’m not alone in this journey. Decreasing isolation heals that pain. Finding community (online or in person) amongst other people living with diabetes breeds opportunities to grieve together, encourage one another, and restore hope that life can go on and be good!

3. Practice Self-Compassion

When newly diagnosed, it’s easy to become overwhelmed with countless tasks, variables, and management goals. The pressure you may experience, whether applied internally or externally, can feel suffocating. It’s impossible to manage your numbers perfectly all of the time. It’s impossible to understand and apply all of the known and unknown variables when trying to bolus correctly. Give yourself permission to learn over time. Diabetes is a “thinking disease” because we’re always thinking about something related to our diabetes, especially in the beginning. Regardless of your age at diagnosis, there are nuances and challenges that only you have experienced. Practice self-compassion. Speak to yourself the way you would speak to your best friend, child, or partner when they are suffering. Practice kindness and patience as you adapt to living with diabetes.

If your diabetes diagnosis feels confusing or complicated, you’re not alone. Please reach out to the diabetes community, your endocrinologist, or a mental health provider to grieve, grow, and heal. How you think and feel about your diabetes right now does not have to remain that way. There is hope for change.

To learn more and connect with Erika, please check out her website here or email her at


Additional Resources:

5 Steps to Reframe Negative Thoughts about Diabetes

The Top Five Emotional Obstacles in Controlling Diabetes

This Diabetes Awareness Month, Don’t Forget about the Things You Do RIGHT!

This Year (and Every Year), Celebrate Your Victories and Embrace Imperfection

A Volleyball Named Wilson and Diabetes Isolation

  1. Avatar

    I am a 58 year survivor of Type 1 diabetes. It’s been a rough road to travel but I am not a quitter. I was Diagnosed in February 1968. I was 12 years old at the time and a seventh grader.

    The best advice I could give is accept the diagnosis and work hard to control it so it doesn’t control you!

    Be resilient!

  2. Avatar

    I was diagnosed with T1D when I was 9 years old and have lived with it for 64 years! No problems as of yet! I believe in exercising daily and careful food choices are key!

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