Today is World Diabetes Awareness Day, so I thought I’d share my story. When I was a kid it was “a shame” because I was “so young”. As I grew older it was less tragic and more inconvenient. Diabetes had become so widespread by the time I was an adult that it was not only common but relegated to “nuisance” status by those who had never encountered it firsthand. When I wasn’t being lectured about my diet and lifestyle choices I was being sold ridiculous ideas about treatments and cures that would eliminate my dependency on insulin, from fad diets to a very specific routine that involved drinking hydrogen peroxide. Diabetes became an urban legend that crept into as many conversations as it could. Everyone had an aunt or a friend who had diabetes “real bad” and suffered immeasurably because of their own sad shortcomings. Everybody knew somebody, but nobody really knew much about Diabetes itself. I’m not here to educate. Most people who actually want to know anything about this disease will do some reading. It’s out there. I’m here to tell you what they don’t tell you in books. What happens to your life while Diabetes is doing what it does to your body.
By the time I was diagnosed at age 9 my mom had been a diabetic for over 15 years. As a kid she was given a pretty short expiration date, and how we dealt with diabetes in children was dismal and rare. We knew very few details about how blood sugar and body chemistry worked and even less about how systems in the body interact. We were shooting blind, and we were losing. My mom lost her sight just before I was born, and people had the nerve to condemn her for keeping the pregnancy that would do such a thing. Instead of giving up, she persevered. She learned braille, learned to take care of a newborn, and would eventually go one to be an advocate for people with disabilities and an education facilitator for other blind people.
For me there were few options when it came to routine, but my Diabetes was much different from my mother’s Diabetes. We were beginning to count carbs and categorize food. We knew that there were things other than food and exercise that affected one’s blood sugar, we just didn’t yet have a system for managing Diabetes that took into account a child’s changing body, other conditions, or fluctuating schedule. Instead we were heavily restricted and chastised for not being perfectly regimented. I went to camp for a few summers, but I came home in almost worse shape than I was beforehand. I made some good friends, but they all seemed to be getting it, and I just wasn’t. Around the time I began to take a dedicated interest in my own health I was patronized and treated like I was stupid, so I stopped caring for a long time. If no one was going to help me I certainly wasn’t going to waste any more effort with something that wasn’t working.
Right before my thirteenth birthday my mom died of complications from her Diabetes. The curse that had loomed over her since childhood had given her twice as long as she’d been promised. For me it meant the one person who understood my frustration when I felt like I just couldn’t get it right was gone, and my teenage year were full of doctors and educators and adults telling me why they thought I was failing. I was lectured instead of taught. I was reprimanded instead of being listened to. I felt like giving up. To this day I will walk out of a doctor’s office and never return the moment my mother’s life and death is used to scare me to health. Did I see what it did to her? Of course I did. Does it help to hold it in my face like a death sentence? Never, and I won’t tolerate it.
By the time I left for college I was floundering. I had researched newer insulins and better routines, but my medical team refused. My driving privileges had been revoked because that same team told the California DMV that I showed nothing but disregard for my own health and safety, and to this day I don’t have a driver’s license. Then I lost my health insurance. Say what you want about the Affordable Care Act, but I know what it’s like to dodge colds like the plague hoping you don’t end up in the hospital. I know what it’s like to get insulin in the mail. I know what it’s like to consider every ridiculous idea that comes to you, because I couldn’t even pay for my own health insurance with a pre-existing condition and the state wouldn’t give me any unless I was homeless and pregnant.
I was lucky to find a job with reasonable health care benefits. I was even more lucky to finally find an endocrinologist who would listen and work with me. Because of her I learned about inflammatory disorders, autoimmune issues, and insulin resistance. Because of her I found something that made me feel like maybe I wasn’t just waiting to die.
When I met my husband he had an insulin pump but little else by way of education. Having been diagnosed as an adult, he had been forced to put himself int he hospital before his doctors would even consider the idea that he might need insulin, a pretty common situation adults with Type 1 find themselves stuck in. In helping him I began to re-educate myself, and therein started my pump journey. It hasn’t made me perfect, but it has enriched my life exponentially. A few years later I would add a CGM, and it’s like a whole new life.
About six years ago my stepson, who was 2 at the time, was diagnosed, and his Diabetes gives me hope that he won’t have the childhood I did. While it won’t be easy for him, we have tried to make it just another thing that he does, not something he HAS to do that will breed resentment. While I know he will have his phases, his ups and downs, and his failures, we are trying to instill in him an open dialogue atmosphere as two adults who know what it’s like to try your hardest and still have a bad day or not try your hardest because you’re human and pull yourself back from it.
So here’s what the books don’t tell you about Diabetes:
1. Diabetes doesn’t ever come alone. It comes with a litany of other autoimmune and inflammatory diseases. Your blood sugar affects anything from your muscles to brain chemistry. Diabetics are prone to depression, vitamin deficiency, fibromyalgia, JRA, thyroid disease, heart disease, eye disease…you get the picture. We are constantly watching, constantly wondering, and constantly being brushed off by the medical world, because everything wrong with us is attributed to diabetes. Everything.
2. Diabetes never takes a day off. This should seem very obvious, but it’s not. There are some days you just don’t feel like counting as closely or planning the next 4,000 steps of your day. Much like a “cheating on my diet day” there are some days where you just accept that you’re going to feel like crap tomorrow and go to the Chinese Buffet. Believe it or not, it’s ok to be human.
3.Disclosure about Diabetes can sometimes be worse than coming out as queer. Believe me. I’d rather explain my girlfriend sometimes than my insulin pump.
4. Diabetes is expensive, even with prescription coverage. Co-pays, vitamins, and testing and pump supplies, even at 80%, are very expensive.
5. Diabetes means a lot of math and psychic ability. Seriously.
6. No one knows. Let me repeat that: No one knows. I could have all the complications. I could have none of the complications. I could have them completely aside from Diabetes. Things could be related that haven’t even been linked yet. No one knows, and I refuse to live my life concerned about hypotheses.
SO, today is Diabetes Awareness day. I don’t think there’s anyone who can read this who isn’t aware that Diabetes exists, but sometimes that awareness comes in the form of an obsolete pamphlet written in 1989. Hell, my work manual still uses the phrase “insulin reaction” to describe hypoglycemia. As we’ve picked up the cause for more fashionable diseases, Diabetes has become old hat to those who don’t live it every day, but it’s still costing us. It cost me my mother. It could someday cost me my husband and the only child I have, because it’s already cost me much hope of having children of my own. It cost me the freedom of a license for many years and the peace of mind to know I can change careers or start my own business. It cost my husband his military career. It cost my mom her sight and a huge chunk of her life. These are things no amount of logs or checkups can bring back.
Diabetes Awareness Day….for me it’s every day, but it’s no longer the Diabetes that it was 21 years ago. My hope for my stepson grows stronger every day, but it is defendant on us not forgetting that these forward steps don’t mean we’re on the easy road yet. We’ve still got a journey ahead of us. We’ve still got stories to tell.
Go now, eat the pie…..then bolus.