When I was first diagnosed with type one diabetes at 13 years old, neither I nor my parents knew anything about the condition. It was 2008. Few resources talked about the nuanced ways diabetes affects you and your loved ones’ lives, and access to those resources was almost non-existent.

After my diagnosis, my parents and I were thrust into classes that taught us most of the practical knowledge we needed to know: how to inject insulin, calorie count and notice signs of high and low blood sugars, etc. They were helpful and taught me skills that I still employ today. But there was so much I wasn’t taught about the realities of being diabetic and how the condition would affect me physically and especially emotionally as I grew up with the condition.

It’s been almost fifteen years since doctors confirmed that I have T1D, and there’s so much I’m still learning about the condition, especially how it affects me emotionally. I’ve struggled with anxiety for probably longer than I remember. As a chronic overthinker, I, like many around the world, lay awake at night consumed with worry and stress.

For a while, I thought the sole reason for my anxiety was my parents’ tumultuous divorce. But it turns out my diabetes was and remains a major source of my anxiety, and I’m not the only diabetic who struggles with it. 

Research shows there is a strong link between anxiety and diabetes. One study found that Americans with diabetes are 20 percent more likely to be diagnosed with anxiety than those without diabetes. This was found to be particularly prevalent among young adults living with the disease.

Why? Well, that’s a complicated question.

“With both types of diabetes, anxiety can come into play in different ways,” Dr. Lloyda Williamson, professor and chair of the Department of Psychiatry and Behavioral Sciences at Meharry Medical College, explains. “When their blood sugar goes up (or down) in a cycle it can cause an individual to feel more anxious. For those with low blood sugar, feeling weak can make them anxious versus those with higher blood sugar levels often feel more physical symptoms.”

Scientifically, studies have shown that stress can cause high blood sugars. According to the University of California San Francisco’s Diabetes Education Online, when you’re stressed, your body prepares itself by making sure it has enough sugar or energy if needed. Insulin levels fall, but if you have diabetes and don’t make insulin, that doesn’t happen. Glucagon and epinephrine (adrenaline) levels rise as more glucose is released from your liver. Simultaneously, growth hormone and cortisol levels rise, which causes body fat and muscle to be less sensitive to insulin, ultimately resulting in more glucose in the bloodstream.

That makes a lot of sense in my case. Whenever I’m stressed, my blood sugars skyrocket and keeping them down is a real challenge. Alina Tillman, who’s had T1D for 21 years, eloquently described what it feels like to try to manage diabetes, stress and anxiety. 

“Diabetes and anxiety have a sort of seesaw relationship,” she tells Blavity. “If one or the other isn’t managed correctly, they can really throw off regulation of either condition. Anxiety makes my blood sugars drop, stress makes blood sugars increase and high blood sugars worsen stress. It’s tough juggling all three, but I feel my best when all three are all well managed.”

Just thinking about how to manage your diabetes can be overwhelming, as there’s so much fear that’s a part of living with diabetes. There’s fear about the past. Most people living with diabetes have gone through periods where they struggled with managing their diabetes (I know I have), and the fear of how those periods have compromised your body and may shorten your life is real.

There’s fear about the present. As Tiana Cooks, who’s lived with diabetes for eight years, tells me, it’s the “what ifs” that are all-consuming. What if I run out of my insulin medication and don’t have access to more? What if this amount of insulin isn’t enough to compensate for my meal? What if my blood sugar drops in the middle of this meeting? The list of questions goes on for what feels like an eternity.

And then, there’s fear about the future. That’s where my anxiety peaks. I wonder whether I’ll lose my sight or a foot later in life, or what pregnancy will be like.

For people living with diabetes who are fortunate enough to have health insurance, there’s the fear of losing their coverage. Insulin and other medications used for diabetes management can cost hundreds of dollars a month with health insurance. Without it, it’s thousands. People living with diabetes who can’t afford that either don’t treat their condition, use counterfeit medications or ration their insulin. All of which can kill them. And does.

Over the last few years, the amount of people with diabetes who’ve died because of the high cost of insulin has risen astronomically. In 2017, 26-year-old Alec Smith died because he couldn’t afford the $1,300 monthly cost of his insulin. Jesimya David Scherer, 21, worked two jobs to help pay for his insulin. It wasn’t enough. He died of diabetic ketoacidosis, a serious diabetes complication that is a result of your body not having enough insulin. Their lives, and way too many others, ended because insulin is inaccessible in this country.

Those stories and fears run through our minds all day, every day. It’s easy to get lost in those thoughts and go through extreme anxiety. Add the anxiety and stress of being Black in America, and the stigmas about mental health in our community — it’s easy to feel alone.

“Diabetes management is stressful because it’s 24/7,” Phyllisa Deroze, who’s been a person living with diabetes for 11 years, shares. “It doesn’t stop. I can’t think of two consecutive hours where I haven’t thought about diabetes since my diagnosis. That weight is heavy and can cause stress at any given moment.”

Deroze says her blood sugar seems to always drop at the worst times, which stresses her out. “This past winter, I traveled to NYC to go ice skating at Rockefeller Center with my husband and daughter, and just before it was our time to enter the rink, my blood sugar dropped,” she recounts.

Preparation is key for Deroze to keep her anxiety at bay.  

“I make sure that I am always prepared, and it helps reassure me that I am safe or will be safe at all times,” she said. “I also find relief in talking with others who have diabetes and understand what it is like to carry the weight of it silently each and every day.”

For Cooks, taking a moment to breathe and talking with other people with diabetes helps her release stress and anxiety.

“Taking time to breathe is helpful,” she tells Blavity. “Whether that be outside, working out or journaling. Sometimes it is nice to take a moment to pause. But I have learned that it is okay to ask for help when my anxiety gets bad. I recently started seeing a therapist, and it has been incredibly helpful in managing my anxiety and stress.”

Dr. Williamson echoed Cooks’ stress management tactic. 

“If there are additional emotions experienced in diabetes management, it’s important to let a primary care provider know to see if there are additional care avenues to seek through a mental health provider,” Dr. Williamson said. “Every individual should know they are not alone in their experiences and management of diabetes.”

As for me, well, I’m still trying to figure that out. Writing articles like this that capture the complicated reality of living with diabetes helps. Having a little faith in my body does, too. But knowing that I’m not alone and that there’s a community of people who see me and my struggles, is the most helpful of all.