I Don’t Want To Feel Invisible With Type 1 Diabetes Anymore

From the moment I was diagnosed with Type 1 Diabetes, my whole life changed. In more ways, than I could have ever imagined.

I had to discover myself in a whole new light; a different lens shall you say. While the days continue to pass and change, so does my diabetes.

But the more I try to adapt to living with this disease, the more I realize that I have to adapt to the world around me. The world that is unaware or doesn’t understand Type 1 Diabetes.

I could walk in a room with a smile on my face, but deep down I could be struggling with my diabetes that day. No one would ever know unless I spoke openly about it. But even then most people pay no mind to it. I feel invisible with diabetes. While I’m present, this huge part of my life is not seen. It can’t be explained, understood, seen, or felt.

Diabetes is like living in a prison confined by social stigma and misconceptions.

I’ve experienced and dealt with many life-threatening situations. It’s made me face reality and realize how fragile life is and how easily it can be taken away.

There’s no perfection with this disease. It’s just a human fighting to survive every day. While diabetes is constant, the variables presented every day is not.

Diabetes is like Einstein’s insanity quote about expecting different results. But instead, diabetes doing the same thing over and over again and expecting the same results.

I hear “if you change your diet, exercise, or lose weight your diabetes will be in better control”. With all good intentions put forth, Type 1 Diabetes can’t be simplified.

“At least your alive and it’s not cancer”. “If you eat so and so I hear it will help your disease”. “There’s a cure out there for it”.

Instead of finding some compassion and empathy, there’s judgement and scrutiny. For a disease that I never asked for. One that leaves me in tears, where I beg on certain days for things to go right, where I don’t have to think so much and fear the unknown.

I don’t want to feel invisible with Type 1 Diabetes anymore. 

I want others to understand how complicated Type 1 Diabetes truly is. That as manageable it can be, it’s just as deadly. Insulin is not a cure, and it only keeps us alive until there is a cure. That we need others help and support in the strive for a cure.

My voice matters, my feelings matters, and a cure for Type 1 Diabetes matters.

The Truth Behind My Encounter With Diabetic Ketoacidosis

The Truth Behind My Encounter

With Diabetic Ketoacidosis:

(A day like any other, can turn into a day you’ll never forget)

With diabetes comes the good and the bad. When it’s good, it can be REALLY good. But when it’s bad…it can be life-threatening.

I’ve certainly had my share of bad days. Trying to battle the high and the lows, and trying to stay as close to normal without losing my sanity.

With having diabetes I’ve experienced many symptoms. But one day came symptoms like no other…

chills - nausea - vomiting - back pain - weakness - blurred vision

… and lots of ketones

Yes, you’ve guessed it! I had DKA (Diabetic Ketoacidosis)

This was years ago, after a night of drinking with friends. Wanting to live a free, independent young adult life. Knowing, yet not knowing how destructive being the slightest bit careless could affect my diabetes.

I just felt terrible. To the point where I questioned where to take insulin or not. I thought to myself … Well I don’t really plan on eating today, and I don’t want to worry about dropping “low”. I thought I was saving myself from having to fix my blood sugar.

So I missed my morning dose…

(Boy, was that a mistake - NEVER - would I do this again)

I didn’t know at the time that insulin is needed (with or without food). Even on sick days! Without enough insulin in my body, my body can’t receive the glucose necessary for energy.

I kept close eyes on my blood sugar for a few hours that day, which was only in the mid 200’s. I thought that due to the fact I wasn’t eating, that my blood sugar would come down eventually anyways.

But the symptoms progressed. I couldn’t keep anything down … not even water. To be honest, DKA never came to mind. Never had it since being diagnosed, and was most recently been keeping my blood sugars in better control. I finally got to the point where I had to go to the emergency room. I knew something was off. I’ve never felt this sick in my entire life.

Upon getting there, the doctors ran several tests. My boyfriend met me there, very frantic and confused about what was going on. The test came back that confirmed that I had Diabetic Ketoacidosis (DKA), which showed that the chemistry in my body was thrown off.

I’ve never been admitted for DKA before. So I didn’t know what to expect. I was sent up to the ICU (Intensive Care Unit). This was serious. I was told that I was lucky I caught it early on.

This comes as such a surprise, because I had tighter control over my blood sugars and diabetes than years previous. At this time, I was averaging an A1C of a 6.5-7. This just goes to show you how quickly things can turn sour with diabetes. You’re never “out of the woods” with diabetes. Each day is different from the last.

Diabetes is so unpredictable, demanding, and can be life-threatening. 

Upon being placed in the ICU, I received an IV and was on an insulin drip. My body was so weak, I needed help when using the restroom. Diabetic Ketoacidosis completely disabled my bodily functions.

While I could have avoided this, and have made better decisions. I did learn from this experience. How I could prevent this from happening in the future. Knowing my limits and being more cautious.

It’s unfortunate that I had to learn the hard way. I had to be reminded of the severity of this disease. While I can still live a normal life, there’s sacrifices to be made, and extra work to be done.

Like they say “what doesn’t kill you makes you stronger“. I’m just glad I’m here to share my insight and experience.

Diabetes tests your will power and your ability to rise above it all. I’ve learned that diabetes doesn’t take sick days. Diabetes doesn’t care about your plans, how your feeling, or what you’d rather be doing. It’s always going to be there, morning and night.

I am thankful and appreciative for St. Joseph’s Hospital, for donating and covering my hospital stay when I had no insurance. For that hospital, those doctors, and nurses helped me recover and return to full functioning health.

The truth is…while diabetes has opened my eyes to a world full of challenges…it’s made me the strong person I am today. So for that I’m grateful.

Why Managing Diabetes Is a Full-Time Job:

I don’t think ‘we‘ as diabetics give ourselves half the credit that we should.

After all.. managing diabetes is a full-time job.

Having diabetes is like running a marathon—where there isn’t a finish line.

Some days you’re keeping up to pace, and other days you’re falling behind.

It’s an around the clock job. No days off. No vacation.

You can’t forget about it and come back to it later. (Even if we wish we could).

There are days where diabetes gets unintentionally placed on the back burner.

It get’s mentally exhausting and we go through periods of feeling burnt out.

Maybe it would be easier if managing diabetes was all that we had to do.

But it’s not.

Then comes life.

Having to go to work—raise a family—go to school—and the list goes on

It’s not all about “managing diabetes“.

It’s managing life on top of it all.

We tend to be hard on ourselves.

We forget that we’re only human—We’re imperfect.

We’re not always going to have the “perfect blood sugar“.

Or eat the healthiest meal.

Or exercise every single day (as we believe we should).

We don’t get a paycheck.

We get an evaluation test called an A1C.

Sometimes this test doesn’t justify all the blood, sweat, and tears we put into this disease.

7 days a week—365 days a year

We feel a lot of pressure to do well.

For our health—For our loved ones—and for our future

Sometimes we think “what do we have to show for it?”

“When will this all pay off?”

That answer is ‘today‘

Through all the frustration, grief, and exhaustion we experience.

We have today.

We may have one of the hardest full-time jobs.

But we have control over diabetes.

Diabetes doesn’t control us.