Looking Back – 30 Years of T1 Diabetes

My 30 Years of Diabetes – Part 1:

I sit here at my kitchen table, reflecting on my last 30 years of life with Type 1 Diabetes (T1D). Thirty years ago today, I received my life-changing diagnosis. What have I learned? Am I happy with this life? After living with Type 1 Diabetes for so long, I can honestly share many things that I might not have wanted to (or could) in the early years. However, I can’t share EVERYTHING in a single blog post so stay tuned — throughout the coming days I will talk about some crazy stuff I’ve had to deal with with as a Type 1 Diabetic and my innermost thoughts that I’ve never really had the courage to share.

So, here we go!

Mistaken Identity: Type 1 vs Type 2 Diabetes

Before I get into my personal experiences over the last 3 decades, it’s important for me to draw a line between Type 1 and Type 2 Diabetes. They are not the same.

Through the years, I’ve lost count of the number of people who have said to me, “But you don’t look like a diabetic.” What is a diabetic supposed to look like? Can someone please tell me? A  month doesn’t go by in which someone doesn’t say, “I thought only fat people got diabetes.” Really? Because – only fat lazy people get diabetes right?

In fact, I think there is such a high level of ignorance in society about Diabetes (and other topics in general) that I shouldn’t be surprised. Novo Nordisk created a table (see image below) that draws some distinction between these two different classes of diabetes. There are others classes, such as Type 1.5 (commonly referred to as LADA or Latent Autoimmune Disease of Adults) and Gestational Diabetes, but let’s keep it simple today.

Misrepresentations by the Media

Because so much misrepresentation and misunderstandings exist, it’s only natural that society is equally confused about diabetes. Even, the media has made several big mistakes through the years. I just have to shake my head sometimes.

In a society where the prevalence of diabetes is on the rise, how can these mistakes happen? Well, it happens. Don’t believe everything you read online or see on TV. Check out this list from Wikipedia HERE that highlights movies that have referenced our friend, “Diabetes”. Diabetes.co.uk is one of many noteworthy blogs that have drawn attention to the problem of diabetic misrepresentations by the media – you can find some examples HERE.

Don’t blame yourself if you’re confused. Even Hollywood is confused.

Educate yourself, be an advocate for your own health AND don’t be afraid to ask questions (trust me, most diabetics are honored to share facts about their condition instead of confront the assumptions).

My Early T1D Days

I remember the day I was diagnosed with Type 1 Diabetes. Unlike many memories of youth, these memories are like cuts in stone.

I remember being strapped into a gurney, the ambulance siren, nurses, doctors, the strange beeps and hums from the medical equipment around me, and the feeling of my young skin being pierced with needles. The thick unquenchable brain fog… I didn’t really care that it was enveloping me. I was seven years old, and at that moment, I didn’t know I was dying.

And The Fog Lifted…

When the fog finally lifted, I remember the August sunshine trying to peek through the covered hospital window. Though faint, it burned my eyes. They were sore because I was sensitive to light because my blood sugar levels were so high. I remember Mom and Dad telling me I was okay. If I was okay, why did I have so many tubes attached to me? Why was there a nurse pricking my finger with a sharp lancet? Why did everyone look so worried?

Diagnosis: Diabetes

That was the day I was diagnosed with Type 1 diabetes. It began much like any other day, except that I never saw the golden August sun rise to greet the morning. I had begun to slip into a diabetic coma. At the time, I didn’t realize the significance this day would have on the rest of my life.

I didn’t realize the significance this day would have on the rest of my life.

After my diagnosis, I was scheduled for several follow-up appointments. I had appointments with a nutritionist, an eye doctor and my diabetic endocrinologist. At the time, I hated all of them. Actually, I refused to talk to them. I was a very shy 7 year old, but I was also angry. I blamed them for the new havoc in my life, yet it was my own body whose immune system attacked the insulin-producing beta cells in my pancreas and destroyed them. That almost sounds like science fiction! Nope, it’s reality for a Type 1 Diabetic.

A Cure on the Horizon?

I remember one of my first appointments with my endocrinologist and how he gently tried to reassure my parents that I would be ok and I would grow up big and strong if I took good care of myself and checked my blood sugar. He told my parents that a cure was on the horizon. I remember the conversation at our kitchen table that night, “Don’t worry Laura,” my mom said, “Dr. McMillan said it will be less than 10 years until the cure.” My parents were so grateful that I had been diagnosed at such an exciting time in Diabetes research and medicine. It would be ok. Their daughter would be ok. Their daughter wouldn’t have to live her ENTIRE life with diabetes. Diabetes was just a for now thing and the cure was on the way! Dr. McMillan said so.

Well, 30 years later, I still haven’t seen the cure.

Social Survival Through the Ages

Every Type 1 Diabetic has been there… some bathroom, some place… a needle + syringe and someone giving you a dirty look while you feeling compelled to say, “I’m not a drug addict – I’m a diabetic.”

I’m not a drug addict. I’m a diabetic.

For years I was totally embarrassed of my diabetes. I tried to hide it. I didn’t want ANYONE to know because I was completely ashamed. Compared with my peers, I was different – no one else was living with diabetes. My youth was a very lonely time. It may have appeared that I had friends and that I was ok, but inside, I felt very alone.

Halloween… trick or no treat?

Halloween was especially difficult for me. Looking back, I realize now (as an adult) just how much my community loved me and how un-alone I should have felt. To me, Halloween was BETTER than Christmas. I mean, what kid doesn’t love bags of chocolate and candy, given to them by adults? After my diabetic diagnosis, I was so excited to celebrate my first Halloween. Finally, I might just get some of my beloved chocolate; mom and dad had been keeping the sweets out of the house. Finally, I could rejoice and celebrate my chocolate love again!! Just for ONE night. I was excited.

My excitement soon diminished when we’d arrive at our neighbors homes: Shannon and I would say “Trick or Treat” and our neighbors would comment on our lovely homemade costumes. I remember tingling with excitement awaiting my treats. Finally – the chocolate I’ve been craving!! And then, it started. It was like my neighbors had been possessed by those hateful doctors, one after another. “Here Shannon, Happy Halloween… Oh Laura, I have a special treat for you!” I was excited until I realized what a special treat was. Oh my good god of diabetes. I have never seen so many freaking apples, cans of diet soda and crackers in my entire life. Looking back, my neighbors did exactly the right thing. Their love and compassion for my health was just something I didn’t understand at the time. I wish I had been more grateful.

Lessons of Self Control at an Early Age

Halloween was such a sad event for me that mom and dad eventually made my sister Shannon dump her awesome bag of candy on the floor and divide it with me. However, the rule was… ONE piece of chocolate. That’s it. Halloween 1986 was when the ruthless lesson of self-control began. I didn’t fully understand why I was being punished, but that’s how it felt, and yes – because of this, I hated my diabetes.

Reflections

The first few days, months and years were tough. I won’t lie. It was a time of growing up, fitting in, being obedient and learning. I’m grateful that my parents were strong supporters and stood beside me as I faced these newfound challenges. Diabetes isn’t something that simply affects the person. Diabetes affects the entire family. I’m sure my sister resented me for the added attention but I was actually envious of her.

I’ve begun to understand

Please note that as I’ve grown older I’ve begun to understand my diabetes and why it is actually a blessing. Really. Today’s post about my early days with diabetes may have had a few negative vibes – but, just imagine, what it was like for a seven year old – being told you have something called “diabetes” and that you need to inject yourself and stab your fingers multiple times each day while eating healthy food and being active. It isn’t exactly the happiest of memories.

My goal with my posts this week will hopefully expose you to what goes on inside the heart and mind of a young diabetic. My goal is to share the raw uncut version of life with diabetes and the good that comes from being diabetic because, this story really does have a happy ending. Really.

In my next post, I’ll share a few stories of my first few low blood sugars, what it’s like to leave home for the first time and eventually I’ll get into diabetic dating too. Stay tuned!

Comments? Questions? Post below!