From diatribe.org
By Christine Fallabel
Author Christine Fallabel, who has had type 1 diabetes since 2000, shares a powerful perspective on what she’s felt like living with the condition. Fallabel and others open up about their personal experiences and vulnerabilities of living with type 1 diabetes.
Many people with diabetes feel like tired heroes. Why? Because our lives are on show. We’re the brave warriors combating misinformation and diabetes jokes, and going to sleep only to wake up and do it all again. The psychological burden of being the only person with diabetes in the room can be heavy, hard, and inescapable.
We’re used to people telling us what to eat and what not to eat, to people pulling at pump tubes and heartstrings. We know the pendulum swing of hearing “It’s not too bad” to stories of distant cousins who lost their feet – sad tales from a war we never wanted to enter in the first place.
The burden of explaining is on us: carb ratios, life expectancy, the insulin pricing crisis, and how sugar can sometimes makes us feel sick, or sometimes a juice box or candy bar can save our lives.
The everyday impact of diabetes
Every decision in a day is directed by my diabetes. At age 12, my childhood was ruthlessly stolen from me. Gone were the carefree days of hopscotch and playing outdoors for hours without my parents knowing where I was. Seemingly overnight, all the fun and frivolity was replaced with multiple daily injections, talks about complications, and counting out Ritz crackers for my morning 10-gram carb snack.
The responsibility was (and is) heavy. When most people can make decisions on a whim based on wants and desires, we’re stuck in third gear calculating, measuring, and scheming to meet exacting standards. We’re thoughtful; we’re literally always teeming with thoughts.
We strive every day to fill the dreams and expectations of others and to prove that diabetes doesn’t hold us back. We rarely acknowledge that sometimes it just does. Our invisible condition is on constant display.
We’re a convenience and a medical miracle for others to marvel at (“Hey, I know someone with diabetes”) and a no-vote from many legislators. And while they get to go home to their families and eat dinner with their properly working pancreases, we test, measure, count, inject, and hope for better days.
Why we minimise living with diabetes
Living with diabetes can be overwhelming and we’re taught to minimise it. Dr. Justine Debelius, who has lived with type 1 diabetes most of her life, knows this first-hand.
“The worst moments for me are staying overnight in shared rooms,” Debelius said. “There is nothing quite like worrying you’re going to go low, then worrying you’re going to wake everyone else up, and then worrying that people will try and fuss at you.”
She explained that she’d rather not minimize a 3 a.m. low, but does it anyway so other people don’t worry or are able to sleep. “Dealing with them is more exhausting than anything my body can, will, or has thrown at me,” she said.
People with diabetes tend to shove our needs under the proverbial rug. We suffer through lows and smile through highs because the last thing we want to do is bring unwanted attention or focus on ourselves.
“Having type 1 diabetes is like speaking a whole new language,” said Corie from Denver, Colorado, who has lived with type 1 diabetes for the past 10 years. “Most people will never understand the daily ups and downs, the minute-to-minute calculations that rule your daily life.”
Corie was diagnosed at age 20, and even now as a 30-year-old, she explained she still doesn’t have the language to convey her life or lifestyle to anyone close to her. That effort is felt throughout our entire community; it reverberates like an earthquake into every action, thought, and minute of our day. Last minute run or hike? Not before activating a temporary basal setting on an insulin pump, packing low snacks, and making sure your blood sugar isn’t about to plummet or skyrocket.
Heather McClary Chase of Telluride, Colorado said she is always confronted by people who remark that she looks remarkably healthy, “for a diabetic.”
“The most exhausting part in interactions with people tends to be the ‘Can you eat that?’ conversations,” she said. “I know people mean well, generally, but my ability to kindly educate only goes so far.”
Inaccessibility to insulin
Another war we’re battling is the insulin pricing crisis. Gail DeVore, who lives in Denver, Colorado, is a long-time diabetes advocate who has lived with type 1 diabetes for 51 years and has seen the price of insulin skyrocket in real time.
Activists on Twitter, including herself, started using #insulin4all as the rallying cry for people with diabetes who are being priced out of living. But it shouldn’t have to be this way. Why is the burden on patients to clue everyone else in that the U.S. healthcare system is broken for people with chronic diseases? Why does that responsibility fall on us?
We raise our voices and demands, have educated and legislated, but only after many of us have died from rationing the same medication that people without diabetes produce naturally, instantly, and for free every minute of the day. Making people care with our words is also a big burden to bear.
The power of community
Those I’ve met through my 23 years living with type 1 diabetes are some of the kindest, most generous, thoughtful, and resourceful people I’ve ever met. Plus, they’re gritty as hell.
Maybe those attributes come from living a life of constant planning, explaining, defending, and destigmatizing. Of proving that we can and we can’t. And sometimes we don’t want to, but we often have to.
Jedidiah Jenkins wrote in his book, “Like Streams to the Ocean,” of a recent visit to Vermont, where the autumn leaves were especially bright and beautiful. He met a woman who explained that the leaves were brighter that season because of the summer drought. The stress put on the trees by that hardship brought out the brightest colours, and how lucky he was to see them.
She went on to explain that the harder the year, the brighter the leaves. I like to think that people with diabetes are the same. Despite all the hardship, burden, and despair that it brings, diabetes can also bring out our brightest colours, too.
https://diatribe.org/only-person-room-what-it%E2%80%99s-living-diabetes
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