Ninety-five percent of Americans have Type 2 diabetes, meaning their bodies do not use insulin properly. Daily management of both types requires engaging in life-altering measures, including monitoring meals, performing regular glucose checks, and maintaining a medication regimen. These drastic changes can lead to stress, anxiety, and burn-out which, in turn, further exacerbate the effect of diabetes on the body. In addition to disordered eating behavior, these psychological problems can worsen overall medical conditions.
I became very intrigued by the relationship between stress, anxiety, and depression and chronic diseases, and how integrated care can alleviate diabetes symptoms specifically. I took the opportunity to interview a former student that has managed Diabetes Type 1 for most of his life to get an even better understanding of managing diabetes and the impact on his overall mental health.
Antoine’s Story
“You’re Literally Paying to Stay Alive”
Antoine is a 24-year-old professional musician and native of Atlanta, GA. Growing up in Decatur, a suburb just 10 miles east of downtown, Antoine was diagnosed with Type 1 Diabetes age the age of 8. He developed a passion for music soon thereafter and became a student leader in the music program at Stephenson High School before receiving his formal music education in the wind ensemble and Marching 100 at the world-renowned Florida A&M University. He currently travels around the world performing in a variety of venues from local artisan lounges to major music festivals. I had the opportunity to interview Antoine to gain a better understanding of how diabetes has had an impact on his mental and emotional wellbeing.
VG: As a child, what was your understanding of your diagnosis and the impact that it would have once you became an adult?
Antoine: In January of 2002, I was 8 years old. I was sick on and off (diabetes onset is a gradual process) for about a month before the doctors figured out what was wrong. I’m the only person in myfamily I know of with type-1 diabetes. Type 2 is fairly common. From the moment of diagnosis, I was hospitalized for a week at Children’s Healthcare of Atlanta where I was taught what diabetes is and how to manage it.
As a child, I would say my level of understanding was pretty high. It involves a lot of math and I’m good at that. I don’t really remember [having any] depression or moments where I sat and asked: “Why me?” I just knew it was something that would change my life forever but I always tried to live it as normal as possible.
Being singled out of a group when you go eat or play (for instance: someone would always try to bring a diet soda around or ask me “if” I can have a slice of cake) and being constantly monitored by adults was probably the worst part. “Take care of yourself now so that when you’re an adult you can live a full life without complications from diabetes” was constantly preached to me as a kid.
VG: Managing diabetes requires extensive monitoring of sugar levels, food consumption, physical activity, etc. This can be challenging for anyone. With your health depending on these important actions, how difficult has it been to manage as an adult?
Antoine: For me, not difficult at all. I’ve sort of adopted the mentality “Do it or die.” It may sound dark at first, but that’s the approach I have with it. If I want to live the best life I can, I must always be on top of my health or the rest of my life will be a miserable one. I have many diabetic friends and while some of them are on top of it, most of them aren’t. From my training and experiences growing up, an A1C of 11 and taking injections without cleaning the site with alcohol was unheard of.
When I was younger, I thought there was only one way to do diabetes. I didn’t realize that what is normal for me, isn’t the norm. It is actually very difficult to manage and is becoming increasingly harder the less insurance (and money) you have. As a kid, I never saw these things becausemy parents and doctors guided me throughout adolescence. In my experience, being on an insulin pump since I was 13 (sort of like an artificial pancreas) has made life with diabetes a little easier as it eliminates the daily need for syringes and embarrassing trips to public restrooms to draw up and inject insulin.
For most people who are [unaware] to what exactly Type 1 diabetes is and how it works, a guy shooting up with a clear liquid in a syringe inside of a restroom may raise questions (and it always does)
VG: Have you ever experienced any bouts of depression, anxiety (related to hyperglycemia), and/or stress related to managing diabetes (that you mind sharing)? If so, provide a narrative to help the general public understand things that they may not be aware of.
Antoine: I try not to purposely allow my diabetes to affect my mental. However, when blood sugars are not on-target, they affect you. I’m normally a pretty mellow guy, but when blood sugars are elevated, irritableness, stress, and anxiety increase ten-fold. Hyperglycemia is such a terrible feeling, you become very anxious to feel better and that takes time – anywhere from 30 minutes to a few days in extreme cases.
The general public can’t differentiate between type 1 and type 2 diabetes. I guess that makes sense; I can’t tell you the difference between hepatitis A, B, & C, either. Lack of knowledge is ok, but not when people insensitively say “You have diabetes? You don’t look like you have diabetes. Were you not eating right? You should change your diet. etc.” People look at me (5”8’ and 160), don’t see an overweight, unhealthy looking fellow and get confused. It’s more annoying than anything, but if you’re an unsure type 1 diabetic who isn’t content with having a chronic illness that you basically wake up one random day with for no reason, it may be a little hurtful to ask those questions and to make those assumptions.
VG: Is there anything else that the general public may be completely unaware of?
Antoine: Another stress comes fromsomething that isn’t talked about enough in my opinion – the cost of diabetes. Why do we have to pay $35.00 (with good insurance) for a single vile of insulin that lasts two weeks?
Not to mention the cost of syringes and the very overly priced test strips (I’ve had some spells of not checking my blood sugar level when I feel 100% fine for the sole purpose of making test strips last as long as possible). You’re literally paying to stay alive. You’re not paying to feel better – you’re not paying to get better – you’re very literally paying to stay alive. It’s not Tylenol – insulin is as important to maintain life as water and oxygen.
For someone struggling with health insurance and finances, type 1 diabetes can be an anxiety nightmare or a death sentence. Unfortunately, every Type 1 diabetic knows that the fiber of their existence is in something they must purchase from a pharmacy for the rest of their life.
Antoine notes that his overall attitude towards lifestyle changes has been the most effective tool for managing Type 1. His biggest challenges come whenever his blood glucose (sugar) levels are elevated, thus leading to physical and emotional discomfort. Furthermore, the distress experienced by caretakers can have an impact on individuals with Diabetes. Over-protection can increase anxiety in both those affected by the disease and those responsible for their care.
Ultimately, behavior modification and an understanding that management of chronic illnesses (specifically diabetes) and psychological conditions go “hand-in-hand” and must be treated as much in order to decrease symptomology and pursue health equity.
Vaughn N. Gay, LPC, MAC, CAMS-II is a licensed professional counselor, master addiction counselor, and anger management specialist and has served as a practitioner in the field of mental health for almost 10 years.