Type 1 Diabetes: The Invisible Disease
By Guest Blogger Jen Seeba
Maybe you can’t see it, but I can. This picture makes me nauseous.
I remember having to get her flower girl’s dress taken in to accommodate her thin frame. Her mood swings and dark circles under her eyes that night at her uncle’s wedding. She just had too much sugar and excitement, I thought. Little did I know those countless bottled Cokes she guzzled were quenching her insatiable thirst and driving her blood sugar up to God knows how high.
I remember hearing her wake up in the middle of the night to go to the bathroom. Growth spurt, I thought. She’s just not sleeping well through it.
I remember my mind racing the morning I woke her up and her entire bed was soaked. My girl who potty trained in a month and never had overnight accidents.
I remember seeing the knots in her spine as I helped her get her dance leotard on. She’s just going through a growth spurt, I thought.
I remember talking myself out of a diagnosis, things like that don’t happen to us.
I remember the look on the nurse’s face when her blood sugar didn’t register on the glucometer because it was too high.
I remember driving to the hospital in a daze, sick to my stomach, not able to stop the tears. I had seen kids come into the hospital with diabetic ketoacidosis (DKA). It was a medical emergency, with potentially fatal consequences.
I remember relief washing over my entire body when they came in and told us that there were no ketones. We were lucky.
Our whole lives changed that day, almost 5 years ago. Since then, every day is full of assessments and calculations, beeps and alarms, planning and worry. Things I didn’t have to think about 5 years ago are the backbone of my day. They will be the backbone of her day for her lifetime, unless we find a cure.
I remember them sitting me down in the hospital, and assuring me with the way things were going, there would be a cure in 5 years. And here we are, with advances in technology and steps toward a cure….but no cure. Don’t get me wrong, we are grateful for any step forward. And those advances in tech are helpful and make life easier. But for anyone who owns a smartphone or computer, or uses Facebook or Instagram…you know tech isn’t perfect. Things malfunction or break and you get irritated. Now imagine that Facebook outage as your insulin pump or continuous glucose monitor…the technology your body depends on to normalize itself. We lose signals frequently, pumps get dislodged, and we have to act fast to fix the error or do things manually to keep our loves healthy. Decline can happen fast.
People then and now come out of the woodwork. I didn’t know they had type 1 diabetes. They work hard to be normal. An invisible disease that takes so much attention and effort, it’s draining. If they tell you it is easy, they are lying. It is just their normal. I am not sure if my 12 year old, who was diagnosed at 7, really remembers life before it. Someday she won’t.
I cringe when the pharmaceutical advertisements come on and my 12 year old daughter tries to look like she doesn’t hear that the number one cause of chronic kidney disease is diabetes. When she comes home and tells me some kid did a presentation on blindness and everyone turned around and looked at her when they mentioned diabetes as a cause. People get excited when a CGM pops up on a new Disney animated film, or a famous model walks down the runway wearing an insulin pump….but I get disheartened and sad. I don’t want those things to be normal. I want them to be gone. I want to live in a world where NO ONE has to worry about access to insulin, about paying for all this expensive tech, about sleeping, about eating, about exercise, about anything related to type 1 diabetes.
Make it stop. Make it nonexistent. Find a cure.
What can you do?
Know the signs and symptoms, spread awareness to save lives. Support a local or national cause.
Together, we can do this.
“November is National Diabetes Awareness Month (NDAM)! During the month of November, people all over the country team up to spread awareness about diabetes and highlight the urgent need to accelerate life-changing breakthroughs to cure, prevent and treat type 1 diabetes (T1D) and its complications. The need for awareness and education on T1D is more important than ever. Who better than the T1D community to make sure that this disease is properly recognized in November and throughout the year?
Bringing attention to diabetes throughout the month not only helps to bring more understanding to a very misunderstood disease but it can also help to bring in more funding for essential research and support for important legislative issues facing the T1D community.” – From the Juvenile Diabetes Research Foundation website.
~ See Jen’s original post about juvenile diabetes HERE.
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