Being Diabetic, Being Human
Type 1 diabetes has effected me everyday of my life for almost the past 18 years. I've written a lot about it since then, the first time being when I wrote a "book" in the fifth grade about what my type 1 diabetes diagnosis was like.
The book was an assignment from our fifth grade teacher, Mrs. Klukas.
As I grow, my memory fades, but there are certain moments of my life that have stuck with me.
I vividly remember my type 1 diabetes diagnosis...
I remember laying down in that hospital room where the nurses stuck an IV in me to begin to regulate my blood glucose levels. I remember the salisbury steak, mashed potatoes, green beans, and sugar-free Jell-O they served me. I remember the doctors' faces. I remember sitting with my Grandpa Jack, mom, and dad, as the hospital staff taught me how to use a syringe on an orange.
I remember my Grandpa Jack volunteering to do it for me and offering to buy me an insulin pump later in my life. (My hero.)
I remember not liking this experience at the hospital. I remember wondering if I was going to get a treat of Dairy Queen ice cream after this was all over. I didn't know that for everyday after that, my life wouldn't go back to the way it was. It would be something new.
Though, admittedly, I remember liking the attention and nurturing I received there at 10-years-old. I didn't mind the gifts of Rufus the Bear, Barbie dolls, and type 1 diabetes children's books.
I remember when I found out I had type 1 diabetes prior to transitioning to the hospital...
I remember sitting in the patient room with my mom at a primary care provider's office, not knowing my life was about to change. I was feeling irritable, unlike myself, and I had lost a significant amount of weight for a 10-year-old. I remember the doctor coming in with a strange look on her face and telling my mom that I had type 1 diabetes. I remember my mom crying.
I remember not knowing what this all meant... I remember asking her why she was crying. I remember my dad and sister coming to pick us up. I recall my sister asking my parents, "Is Julia going to die?" I looked to them for the answer. Was I?
"No," they answered.
What a relief.
I remember crying in my fourth-grade teacher's room when I finally returned to my new normal.
I was mourning the loss of an old life, and attempting to embrace a new one, attempting to shape a new one.
At almost 28-years-old, I now know that type 1 diabetes isn't a death sentence. It doesn't have to be.
Despite the day-to-day difficulties and how debilitating it may feel at times, you can still live a happy, healthy, whole life with it.
There were many times in the past that I resented it. (There are times I still do.)
The Dangers of Self-Consciousness and Type 1 Diabetes as a Teen
I remember a particular time in my life, in my teens, where I really resented the disease. I stopped taking insulin for a week of my life and no one noticed.
I now know it was a sort of cry for help (mental/emotional help) that I wasn't getting from anyone in my life at the time. When you don't know you need something, you don't know how to ask for it. I don't blame anyone for it. (What good would that do?)
I struggled to talk to anyone about type 1 diabetes as a teen, as I was being conditioned to believe I should hide it around others. I was not nearly as open then as I am today - if I was at all.
I don't share this story often (or at all), but I think it's important to tell at this time in my life as to prevent others from doing the same.
That stunt could've been extremely dangerous for me. My A1C was bad the next time I was at my nurse practitioner's office for a checkup as a consequence of this self-sabotage. I remember being accused of lying about my blood sugar levels, which I documented at that time instead of pulling up my blood glucose level (BGL) log via a CGM. (I'd yet to get one.)
Of course, I was lying about the numbers I wrote down, but I denied it...
The accusatory tone didn't help. I recall this moment a lot in my life too. I wish that the nurse practitioner would've said something like, "Julia, you're not in trouble. We want to help you, but if you aren't honest with me about your blood sugar levels, I can't do that. Can we talk about what's going on? Would it help if you and I could just talk between us?"
I think, on many occasions as a child, type 1 diabetes made me feel like I had to be perfect all the time, and if I wasn't, I was a bad person. If I didn't have control, I was a bad kid - a bad type 1 diabetic. I was worried about being a burden to my parents - financially and emotionally.
I put a lot of pressure on myself to be 100%, 100% of the time.
Perhaps opening up that conversation with a tone of support would've aided me better as a teen and helped me overcome this mental stage of self-consciousness sooner in my life. Perhaps letting go of that idea of needing to be perfect would've served me.
At 17-years-old, I was self-conscious about my weight, as many teens are. On top of needing more mental/emotional support to properly manage my type 1 diabetes, I thought myself less valuable and attractive after gaining weight due to puberty and giving in to my friends telling me I could eat whatever I wanted. (That was not the case.)
As a high school freshman, roughly two years before that incident, I was stick skinny. My friends admired me for it - they told me as much. I thought they only liked me because of it for a long time. When I gained weight two years later, I was treated differently and was told (in a patronizing tone) that I was "proportional" instead of "beautiful."
I remember asking a close friend if I gained weight and her looking at me in a disappointed way confirming, "Yes, I noticed." I remember another person who was close to me who told me I looked "solid" at the time, in a condescending tone, after I asked them if they thought I was thin.
Needless to say, as a teen I believe my stock to go down after being told this by my loved ones.
This is a bit of a detour into a string of problematic women's body image issues I've faced throughout my life, but they overlapped with some issues I was facing in my type 1 diabetes management as a teen.
As our bodies change and as we age, our type 1 diabetes and management of it tends to change too.
Knowing how to accept our changing bodies and learning to nurture them is a gift - one that I didn't have at that time in my life. I hope today's teens are more aware and accepting. I hope they have that gift. I hope in sharing my story and how much I wish I would've loved myself more as a teen, I can help you love yourself better today.
You don't deserve this level of self-sabotage. You deserve to be the friend you don't have right now, but desperately need. You deserve to find her. You deserve to believe in your worth and know that it extends far beyond the surface.
I am ashamed to admit that part of the reason I stopped taking insulin that week, on top of needing more mental/emotional support to handle the day-to-day burdens and burnout of T1D, was thinking that if I stopped taking insulin, I'd lose weight.
I was wrong - I'd lose my health. I was so wrong, and I beg you to never do this to yourself.
I was extremely nauseous and dizzy that week, and unable to perform daily functions with ease as I had before. Our bodies need nourishment. Our type 1 diabetes bodies need insulin. There is nothing wrong with gaining weight, growing, and changing.
NOTHING. Believe this, please.
This story is not uncommon. I've spoken to some women with type 1 diabetes online before about it, and they have echoed my experience. Though it's not uncommon, it should be.
Health and happiness matter most. Unrealistic body images shouldn't matter (or exist). Real beauty is much deeper than our outward appearance.
I never did this to myself again, and I hope you can say the same or forgive yourself for it if you have.
Beauty is in all shapes, sizes, and souls.
If I could go back and tell 17-year-old me, hug 17-year-old me, I'd let her know that everything will be okay, that therapy will help her tremendously at 23-years-old, and that she will be mentally stronger than she could ever anticipate being now, that she will evolve into a new version of herself that she needs.
I can't go back, but if you're struggling - I hope you hear this now.
Today, I weigh the most I ever have. I am not "fat." I am not "skinny." (Those terms are so toxic!) I am healthy, and most importantly - happier than I've ever been.
18 Years In, I'm a New Type 1 Diabetic (a New Julia)
Type 1 diabetes doesn't get easier over the years, but managing it gets better. We live by trial and error. The more we experience it, the better we get at managing it - physically, mentally, emotionally, and spiritually.
When it comes to having type 1 diabetes, it's easy to feel like we're alien compared to our classmates, family members, peers, partners, and co-workers. But, we're not.
As many people with type 1 diabetes will say - this is just what we're dealing with. Everyone has something. We're all human. It's how we manage our problems that counts. If type 1 diabetes weren't our problem, we'd be dealing with something else. We can't compare problems.
At almost 28-years-old, less than two months away from my 18th diaversary when my diabetes will be old enough to be considered an adult, and close to World Diabetes Day on November 14, 2021, I know I'm not perfect at managing this disease and I'm okay with that.
I know where my true value lies. I have come so far in my personal evolution as a person. Type 1 diabetes may be a large part of that story, but it's not the only part. I have grown past the overwhelming resentment and mourning I once felt sporadically throughout my childhood and teenage years.
I have learned that life isn't about trying.
It isn't about doing.
It's about being - being present with ourselves, with others, with our passions, and with the experience of being human.
I once read that humanity (or being alive) is an improbability. As strange as it may sound, this statement gave me great relief and joy.
I could spend a lot of my days feeling upset that I am dealing with a chronic illness, but I don't. I find the laughter. I find the joy. I am being grateful. Don't get me wrong - some days are easier than others (I'm not Mary Poppins), but if being alive is an improbability and type 1 diabetes is the problem I've been dealt in this improbability, I will accept it. I will embrace it. I choose to be my most authentic, present, and grateful self as much as possible with as much patience, kindness, and compassion for my journey as possible.
Whether life is rare or common, it is a gift.
Some days, being myself may mean watching Netflix on my favorite chair in my living room; other days, it may mean working on the next book in my (anticipated) children's book series, "Rosie Becomes a Warrior." Most days, it probably means I am hiking with my boyfriend on many of the great trails near us.
Rest is just as important as productivity. We need both types of days in life. Both are valuable types of days.
Whether you're managing type 1 diabetes or not, I think that's what living a meaningful life really comes down to - finding compassion and gratitude in our days, living them with fullness and awareness of the gift that is life.
I know how hokey and disgusting that sounds, believe me, but at my core, I stand by it.
I hope as my type 1 diabetes journey continues, I can continue to help serve and empower others by sharing about my experience, what I've learned, and how you can overcome your own moments of mourning, self-consciousness, and doubt to live the life you've always dreamed.
Type 1 diabetes isn't a nightmare. It's not a death sentence. It's empowerment to evolve to a higher level of person, if you let it be. True strength lies in your ability to embrace and face your biggest challenges with kindness and unwavering loyalty.
Be loyal to yourself. Be kind to yourself. You will never regret a day of it.
Having type 1 diabetes shouldn't alienate you from being the human you've always dreamt of being.
You got this - you've got yourself. Support is never far away.
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