This Is What It’s Like To Be Young And Chronically Ill


Rachel Garlinghouse/Instagram

We were parents of two kids, ages two and under, and we finally secured a sitter for a much-needed date night. My husband made reservations at a well-known Italian restaurant in St. Louis. We arrived, ordered wine, pasta, and pizza. As I sipped my wine, I began feeling more and more disoriented. The dim candle light was too bright, the conversations from neighboring tables seemed to grow muffled while clanging dishes reverberated, and I was excessively thirsty. This wasn’t an alcohol-induced buzz.

I pulled my glucose test kit out of my purse and checked my blood sugar in my lap at the table. 300. I figured after administering a correction bolus of insulin, my sugar would come down, but it didn’t. Instead, it just kept going up, a higher number appearing on the screen each time I tested. Our date night was ruined. I couldn’t eat the pizza I’d custom ordered. Instead, I just guzzled water, feeling defeated. Once again, my disease had ruined an otherwise perfect evening.

I’m a type 1 diabetic, diagnosed when I was twenty-four. My body no longer produces insulin, so I have to inject it using syringes, pre-filled insulin pens, or an insulin pump. I also have to count every carbohydrate I eat, monitor my exercise and sleep, and go to the doctor multiple times a year. Type 1 diabetics are at risk of kidney, heart, skin, sexual malfunction, and all sorts of other issues if we don’t keep our blood sugar in check. Type 1 diabetes is considered an autoimmune, chronic, and invisible illness.

Type 1 is 24/7/365, and as if that’s not enough, I’m also a breast cancer survivor. I was recently diagnosed with a second autoimmune, chronic illness: lupus. Yeah, I’m just a whole lot of fun. I’m only 38 years old, and I sometimes feel like I’m 86. Being young and sick means I have to do a lot of things others do not.

I can’t ever forget my medical supplies.

I carry a backpack as a purse—and not one of those teeny designer ones. Stylish, I know. But I need some serious space for all the medical supplies I have to carry with me at all times—just in case. I have a glucose meter, a juice box (in case my blood sugar drops too low), a vial of insulin, insulin pens (in case my insulin pump stops working), a backup four-piece pump set, and much more. There’s been plenty of times I was out and about and one of the working pieces that I need to stay alive decided to be a jerk and quit on me.

I cancel half my plans.

I never know how I’m going to feel on any given day or even hour. Thus, I often cancel plans. It’s not impossible, but not usually safe, for me to just “suck it up” and power through feeling ill. Yes, this can be incredibly disheartening, but luckily, my friends and family are supportive and flexible. I’ve had to miss birthday parties, holiday gatherings, baby showers, and all sorts of events because my diseases decided to act up that day.

I lose sleep.

My husband can attest that sometimes we’ll be peacefully sleeping in the middle of the night or getting ready to go to bed, and my continuous glucose monitor will start beeping loudly. It indicates if my blood sugar is too high or too low. A low blood sugar means I need to have some juice before I can get shut eye. Unfortunately, a low blood sugar means I’m sweaty and shaky. Once my blood sugar rises, I’m cold and exhausted. The sleep disruption game is no joke. Furthermore, if I don’t get good sleep, I tend to feel significantly worse the next day—a total domino effect.

I’m late.

I’m a person who values punctuality, but unfortunately, I’m often late. If my blood sugar is too low, I can’t drive. I have to guzzle some apple juice and wait until my blood sugar is stable in order to get behind the wheel, for example. I know the safety risk is never worth it, so I stop, handle my situation, and then do my best to move forward with plans.

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A C C E P T A N C E I had a message the other day asking how I cope with accepting that my bladder doesn’t work anymore. I didn’t have a big moment of realisation but more a series of mini moments over time. This picture was one of my first bladder procedures and it’s crazy to think how much my mindset has changed since then [I’ve also really improved my hospital selfie game]. When I first started instillations 3 years ago I was hoping it would help heal my bladder. Compared to today, I had my instillation knowing it won’t fix anything, instead a way of supporting my bladder. The journey from then to now has been full of procedures, catheters, frustration and tears. Somewhere along the way I realised I was no longer hoping to heal, but instead to manage my loss of function. It doesn’t mean I’ve lost hope, I still hope I can continue finding small changes to my care plan to manage my pain and catheter better. I know there are some options ahead, all that involve decisions about big surgerys but they may improve my quality of life. Maybe one day they’ll invent bionic sphinctors and build new bladders that work. But until then, I have accepted I’ll never pee normally again..well I think I have, it’s an ongoing process 💭 #urologyawareness #fowlerssyndrome

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Illnesses are more of a threat.

Though I’m not considered to have compromised immunity, an illness, including COVID-19, strep, a cold, a UTI, or influenza can wreak havoc on my blood sugars. Illness causes blood sugars to go up. Too high for too long can quickly spiral into a medical emergency. Illness alone is no fun, but pair it with autoimmune disease and you have a recipe for disaster. During sick seasons, or right now during the pandemic, I have to strictly follow the precautions.

I can be doing everything I should and still have bad days, or even weeks. Despite eating healthy, exercising, trying to get a full night’s sleep, meditating, and saying “no” often, I have unpredictably hard times that can ruin my best laid plans. A faulty insulin pump set, too much activity that morning, making one dietary slip the day before, and I can come crashing down. Being young and sick takes a lot of resilience and strength, as well as patience and forgiving myself. I know I’m lucky to be alive, and I try my best to honor my time, even when it’s difficult.

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