Type 1 Diabetes: The Invisible Job No One Pays You For

A Diagnosis No One Hopes For

At age 10, my mom and I were told the thing that no parent wants to hear, and no child should have to understand: “You have type 1 diabetes.” My blood sugar levels were over 500 mg/dL at the time of my diagnosis. 

I had been having symptoms since the summer: 

• Frequent urination
• Increased thirst
• Exhaustion
• Unexplained irritability
• Excessive appetite

I spent a week in a hospital that January, hooked up to an IV that irritated my tiny arm, learning all about what my life would be from there on. I’ll never forget practicing injections on an orange. It was my first feeling of remorse and numbness that I can recall from such a young age.

Little did I realize that my character would be tested again after diagnosis. At 10, I didn’t realize that my diagnosis was the start of my story. It felt like the end.

Since then, I’ve navigated periods of quiet exhaustion that felt loud, isolation that felt never-ending, and a yearning for understanding that could never be truly met. Over the past 22 years, I’ve learned that T1D doesn’t just require you to be your own nurse and caretaker but also your own advocate. 

And that’s tiring.

Constant self-advocacy is a layer of burnout that the T1D community doesn’t talk about quite enough, but has a profound impact on day-to-day life.

What Self-Advocacy Actually Means

When you live with T1D, self-advocacy means speaking up during vulnerable moments, correcting misinformation, battling stigma and misconceptions, pushing back when healthcare decisions don’t meet your needs, and negotiating therapy that suits your real life.

When you’re living with this chronic illness, self-advocacy isn’t optional because silence usually carries consequences. Horror stories have circulated in the T1D community about this. 

From pregnant T1D women whose nurses didn’t know how to manage their insulin to primary care doctors who blamed the patient’s lifestyle for their diagnosis, to the prevalence of misdiagnoses in the older T1D community, simply because of age, weight, or culture.

The list goes on, and there’s a gross double standard.

If you advocate too much, you’re labeled as “difficult,” “dramatic,” or even “high maintenance.” But if you advocate too little, your needs go unmet, and dangerous consequences could ensue.

So, what’s a person with T1D to do? Keep pushing on. There isn’t another choice. You’d advocate for yourself, too, if you lived with this.

Self-advocacy isn’t something they teach you at the doctor’s office. It’s something you learn over time as you build connections within the diabetes community. It’s a skill and habit you have to build over the course of your journey. You get better with practice.

Self-advocacy shows up in all aspects of our lives with T1D.

Self-Advocacy at Work

At work, you may need to ask for accommodations, such as time to check your blood sugar, take your insulin, treat a low, etc. You may also have to decide whether to disclose your diagnosis. When safety is a concern, many people elect to tell at least one person at work, whether it’s HR or a trusted colleague.

Unfortunately, some jobs people cannot do because of personal and associated safety concerns.

At work, there’s a fear of being seen as unreliable or needy, along with the pressure to prove your competence. While you shouldn’t have to justify your body to keep your job, many people with T1D find themselves falling down this rabbit hole.

Self-advocacy isn’t a one-and-done process at work. It can quickly become an anxious cycle, even in spaces that are supposed to understand diabetes. 

Self-Advocacy at Work Even Exists in Diabetes Spaces

Because everyone experiences and manages it differently, you may still find yourself in uncomfortable self-advocacy situations, having to explain how you manage and what you need. It doesn’t have to match what someone else does. Still, that can be a point of contention without compassion.

Just because you’ve figured something out or it works for you, doesn’t mean someone else has, or it works for them.

More generally, if management or co-workers come and go, you may have to repeat yourself. If you change jobs, the same thing! Like most things in life, self-advocacy at work needs to be repeated to sink in and to gain the respect and understanding you deserve.

You’re not asking too much. You’re managing risk and improving survival odds.

Self-Advocacy in Relationships

As much as we love them, even our friends, family, and partners still affect our need to self-advocate. 

You may find yourself repeating the same explanations, reminding your partner why you need to stop in the middle of intimacy to treat a low, explaining to your parents why you were late to a function because you were navigating a low, or explaining to your friends why one restaurant would be easier for you all to go to than another.

You may find yourself trying to manage their emotions—another hidden layer of self-advocacy that people with T1D fall victim to.

You may try to manage your loved ones’ anxiety or misconceptions around your illness, or even find yourself minimizing comments like “you’re so strong” when you’re just trying to live. As much of a warrior as you are, you know that living with a chronic illness isn’t what makes you a good person alone. It’s how you show up with it that matters.

Advocacy in relationships is as much about boundaries as it is about education. With loved ones, it can sting a little deeper than with strangers or acquaintances. 

Self-Advocacy in Healthcare

Self-advocacy in healthcare might take the cake in life with T1D because it’s most directly correlated with our survival. 

The longer you live with T1D, the more you may find yourself making phone calls to insurance in tears, submitting prior authorization requests against looming migraines, going back and forth between appeals and denials, and spending hours of your life on hold.

Hasn’t T1D claimed enough of your time? 

Sadly, adequate care often depends on persistence in life with T1D, not medical need. Many people in the T1D community have to fight for the supplies they need just to survive, and that doesn’t even begin to cover the work of finding discount programs and cost-saving opportunities. 

It’s not just inconvenient to experience but can feel depleting or destabilizing. It’s like you can never catch your breath when you should be focusing on your numbers and overall well-being first. 

Navigating insurance and the healthcare system is more unpaid labor forced onto people with T1D.

The Emotional Toll of Self-Advocacy

These are just some of the ways self-advocacy shows up in life with T1D. The burnout, resentment, and decision fatigue associated with it are often overlooked but are key factors in our mental well-being, which in turn impacts our overall health.

It’s normal to want a break from explaining yourself when you’re living with this. It’s okay to grieve the life you once knew or dreamed of, where this wasn’t necessary. That’s also normal, and it’s heavy.

You’re Not Failing at Self Advocacy: You’re Carrying A Lot

If you ever find that you’re struggling to self-advocate, it doesn’t mean you’re failing yourself. It means you’re craving the breaks T1D doesn’t allow. That’s normal—you’re human. Self-advocacy isn’t about always being “on.” It’s about figuring out how to navigate systems and dynamics that weren’t built for life with chronic illness. It’s about balancing what needs your energy most on any given day.

You deserve more support in this life than you’re granted. You don’t have to be resilient all the time. 

While you may feel that your self-advocacy goes unnoticed or unappreciated, remember to give yourself credit and know you’re never alone. Millions of others are on this journey with you. Self-advocating sucks, but because we’re discussing it, we’re on the path to raising awareness and reducing the need for it.