Tag: symptoms

What It's Really Like To Have An Invisible Illness

What It’s REALLY Like To Have An Invisible Illness


It never occurred to me that one day I would wake up sick and never get better.

But here I am.

I have a chronic illness known as type 1 diabetes, that significantly impairs normal activities of daily living. An invisible illness that shows no outward signs, and to the rest of the world – I don’t look sick.

My invisible illness can easily be hidden, as I look healthy like everyone else. A smile can easily disguise any pain or distress that I’ve experienced that day. My clothing can hide the medical devices I need to stay alive.

I never let my invisible illness stand in my way. I’ve adapted and I know how to care for myself. I manage the best I can. Most of the time I just feel like I’m on autopilot as if I’m in “control”. Nobody can tell what I deal with behind closed doors.

It’s when days boil over, I look pale and disorientated, and reaching for sugar nearby. That’s when someone asks “are you alright”? That’s when I say “yes, I’m okay – I’m fixing my blood sugar, it’s low“.

“I hope you get better soon” –

I hear the sound of deep concern and empathy in their voice – I do. I’m sure I would say the exact same thing if I were them. However, as days here and there are better than others. I don’t get better.

Photo Credit: Ashlyn Mills

“Have you tried [insert herbal remedy or diet]?” –

As much as I appreciate others desire to help, there is unfortunately NO magic potion. In fact, I have had to adjust and make huge lifestyle changes. But no amount of healthy eating, exercise, or herbal remedy will ever eliminate the need for insulin – or cure my diabetes.

“Isn’t it caused by [insert myth]?” –

No, it’s not caused by something that I did. It’s not caused by sugar, lack of exercise, or from being overweight. It’s upsetting feeling blamed for having an illness that I couldn’t have prevented. Diabetes, and so many other invisible illnesses are placed into a isolated bubble of “what we could have done differently” to avoid this. When it could literally happen to anyone.

“My aunt has that and she’s doing just fine” –

I’m happy for anyone who is doing well managing. But reality is – every chronic illness is different for everyone. With type 1 diabetes especially, it often gets confused with type 2 diabetes and its treatment. It’s confusing and irrelevant to talk about how one person with an illness is doing compared to another. With any invisible illness, we all have different body chemistry and hormones. And with diabetes – different sensitivities to insulin.

 

“Well you’re lucky, it could be a lot worse” –

This is when the guilt kicks in. Yes I’m lucky I’m alive, but everyday is still a life threatening battle. Where no two days are the same. But no matter the good or bad days that I have, I just have to keep going. Have faith, and hope for a cure in the future. Until then, just make everyday count and live beyond this illness.

I’m trying –

It may take more for me to complete the same tasks others do, but I do it anyways. I may not have it all together, but I never give up. Some days I don’t know how I’m going to get through, but I always persevere. I have an invisible illness, and even though my symptoms may not be visible, it’s still there.


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How's God's Plan Helped Save My Daughter From Going Into DKA

How God’s Plan For Me Helped Save My Daughter From Going Into DKA

By: Jamie Smith

Most stories of diagnosis of Type 1 diabetes begin with a critically ill child and a diagnosis of DKA. Not my little girl, Mia. But to properly tell the story, I must take you back to 2001.

Long before she was ever even dreamed of. My son was born premature and his life was saved by Karen, a critical care transport nurse. Like most parents, I made deal after deal with God in exchange for my son’s life. I watched him fight while on a ventilator and heard God tell me to become a nurse. I listened.

I decided that I wanted to give back in honor of Karen and to honor the deal God had made with me. Fast forward 11 years, I was working as a critical care transport nurse. My daughter had just turned 2 years old. I noticed that she seemed to always want her sippy cup. Then she began waking up in the mornings completely soaked with urine. Her diaper would be full, pajamas soaked, crib soaked. I tried decreasing her fluids in the evening, but she was so thirsty.

How God's Plan For Me Helped Save My Daughter From Going Into DKA

Early one morning, about a week after these symptoms had begun, I was getting ready to leave for a 24hr shift on the critical care ambulance when my nurse brain finally clicked: check her sugar. I happened to have a glucometer at home, so I checked her – she was 203. Hmmm… So I called my endocrinologist (I had Graves’ disease at the time) and told him what was going on with Mia. He reassured me, said it wasn’t high enough to be diagnostic, she could just have an ear infection and to check her again the next morning when I got home from work.

The next morning, I rushed home and Mia was still sleeping. Good, I thought, this will be a fasting blood sugar and it’ll tell me more. She was 436. I packed her bag, packed my bag, and we headed to our local ER. I called the transport company to give them a heads up about Mia’s inevitable transfer to Nationwide Children’s Hospital, I called the ER and let them know we were coming. I hadn’t even changed out of my uniform. I held my listless daughter on my lap and watched as they stuck an IV; she never even so much as whimpered. Her sugar came back at 462, but she was not acidotic.

In the meantime, the critical care transport company I worked for had been called on another run. Nationwide Children’s said they could send their critical care truck, but it would likely be 5-6 hours. The endocrinologist from Children’s asked the ER doc if he thought I’d be willing to ride in a regular medic truck as the nurse thus making it a critical care truck. He said yes, absolutely she will (I forgot to mention that I used to work as a nurse in this ER and knew the staff very well.)

So that’s what I did. It came full circle. The deal I had made with God about giving back and becoming a nurse had helped to keep my daughter from becoming critically ill with DKA. The endocrinologist at Nationwide Children’s gave me a hug and told me if I wouldn’t have caught it when I did, she would’ve been in DKA within the next 24 hours.

How God's Plan For Me Helped Save My Daughter From Going Into DKA

My daughter was diagnosed with Type 1 diabetes at 2 years old. Today, she is an extremely smart kindergartener who is in the accelerated reader program. She wears an Omnipod and a Dexcom. She doesn’t let it slow her down and she has even made a YouTube video teaching others how to check their blood sugar. Her best friend is another little Type 1, Mady. She is an inspiration to so many and is loved by everyone who meets her.