The T1D journey: top tips for an adult diagnosis

When the average person thinks about being an adult, they might think about going to college, getting a job, falling in love, starting a family, owning a home. Maybe, if we are especially practical, we also leave room for pondering some of the less glamorous realities of adulthood like paying bills, work stress, and aging.

One thing nobody includes in their vision of being an adult? Getting diagnosed with type 1 diabetes.

All of a sudden an organ you probably never noticed before stops working.

You have to test your blood sugar before you eat.

You have to think about what exactly you’re putting on your plate.

Once referred to as “juvenile diabetes,” it is now understood that T1D does not discriminate and onset can happen at any age. According to the CDC’s 2020 National Diabetes Statistics Report, 1.4 million adults (age 20 and older) have T1D.

Maybe you were misdiagnosed for a while before finally being prescribed insulin. Perhaps you were mistaken for having type 2 diabetes and were made to feel responsible for this outcome.

Whatever you’ve been through, it’s likely been a difficult journey.

Here are our top tips to get back to feeling like yourself again, for anyone who was diagnosed with T1D as an adult.

Priorities: Put yourself at the top of your list.

When you’re used to working crazy hours, caring for everyone in your household, or being the person who’s always on call for others, it can be hard to prioritize your own needs.

Not taking care of yourself isn’t healthy no matter what, and with T1D, neglecting yourself will definitely backfire. Recognize where you tend to overcommit to others and see how you can start to pull back to create space for your own well being.

• Start by writing out a list of everything you need to do for the day or week. Then look at what’s essential and what’s optional. See how you can cut your to-do list down to just your true responsibilities and create more room for taking care of your diabetes.
• If you are a parent who spends a lot of time attending to your children, is there a way for you to delegate some tasks to your partner or another support person? This doesn’t have to be forever, but can give you some time to revisit your own routine and build new habits. Explain how your needs have shifted since getting diagnosed with diabetes and why you could use some assistance in taking care of the kids. Getting help with one thing like carpool, homework, dinner, or bedtime would allow you to have a little more time for yourself.
• Speak about your T1D out loud to others to generate accountability. Simply letting the people you care about know about the challenges of your “new normal” with T1D will help you start to prioritize yourself. They will be more likely to check in with you which will encourage you to to check in with yourself.

Plans: Preparation is key.

It can be difficult to adjust to all the planning you need to do when you have T1D, especially if you are used to spontaneously meeting up with friends for dinner, grabbing drinks after work, or you appreciate flexibility in organizing your schedule. The good news is: Flexibility and spontaneity ARE possible with T1D!

• Be prepared for anything! Have extra supplies with you so that you are never stuck in a situation where you don’t have what you need. Choose a low snack that’s easy to pack and carry around (won’t melt or go bad). Carry extra syringes and insulin with you as well in case your pump malfunctions.
• Another important way to be prepared for anything is to get to know your body’s trends. When you know how your blood sugars respond to your normal routine, it gives you a baseline for trying new things. For example, if you know your walk home from work usually brings your blood sugar down a little, then you’ll be able to guess what impact a walk twice as long would have.
• Tracking new experiences also helps you plan ahead for the next time! If you go out for burgers and end up high in the middle of the night, you didn’t fail. It doesn’t mean you should never do that again. It just means you need to reassess the amount of insulin you gave and try it differently next time! Experience teaches us a lot when we are paying attention.  

Peace: Accepting your T1D diagnosis

If you were diagnosed with T1D as an adult, you’ve experienced a major life interruption! You might feel a sense of loss or grief for the life you used to live. This is normal AND it’s important to go through a process of accepting your diagnosis so that you can move forward. What are you doing to come to peace with your diagnosis?

• Do you feel like you are getting enough education from your endocrinologist? Don’t hesitate to bring specific questions and concerns to your appointment. Be your own advocate and seek other resources that will help you feel empowered.
• What additional support do you need outside of your endocrinologist and loved ones? Therapy or coaching are two tools to consider that would help you during this challenging adjustment.
• Connecting with the T1D community is another great way to embrace your diagnosis. Hearing other people’s stories and learning from their experiences takes away the loneliness and isolation of T1D.

T1D isn’t easy to manage no matter how old you were when you were diagnosed. As an adult, you have the additional burden of adjusting to it in the middle of a life you’ve been comfortable living for a while! Rearranging your priorities, adapting how you plan, and making peace with this change will help you feel like yourself again.

If you are looking for more ways to connect with other people living with type one diabetes, check out our Together T1D Facebook group. You can also sign up to receive our weekly newsletter full of T1D tips + real relatable guidance!

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