Welcome, to the first Dead Pancreas Anxiety post.
How are YOU doing today?
I’m okay – not great, not terrible. Just chilling in the grey zone as I typically do.
But seriously, how are you?
I genuinely want to know.
My name is Rebecca, but feel free to call me Reba. Nowadays most people do. So, please, let’s get cozy with each other. Let’s be pals.
Or, in the very least, let’s be comrades in chronic illness.
I have been writing and blogging for several years. You may have done some reading over at A Soul is a Resilient Thing – that’s where I first got my feet wet in the blogosphere. There I mostly post(ed) my musings on life and observations of human beings; then, I dabbled in Diabetes posts and, more recently, my difficulties with my mental health.
And while I had a very positive experience blogging there, I still felt there was something missing. A lack of focus, perhaps…
My want has always been to help people. And, it appears, that happens most successfully when I write. And when I employ my super skill: honesty.
Along with my desire to help others has burned the desire to be more involved in the T1D Community. When I was diagnosed, just over twenty years ago. My T1D diagnosis came when I was on the edge of young adulthood and I spent my early days with folks much (MUCH) older than myself, with T2D.
To say that my first introduction to the Diabetes World left me confused and bewildered would be an understatement at best.
I contacted various Diabetes groups, both locally and nationally, looking for a way to be a part of something. Looking for a foot in the door, I even shared with them my super-awesome familial connection to the discovery of insulin: Frederick Banting (yes, THE Banting!) is my cousin. But those attempts never birthed anything.
My only Diabuddy, for many, many years, was my T2D Nana.
I felt both destined and obligated to go it alone. So I did.
Prior to my T1D diagnosis, I received my first mental illness diagnosis: Dysthymia. The term is not commonly used anymore. The modern term is Persistent Depressive Disorder or PDD. And it is why, should you know me, I often refer to my emotional state as the grey zone. I linger there, never truly entering the darkness but far from the edge of light.
My PDD diagnosis came in my mid-teens, two years before my T1D diagnosis. So my teenage years were brimming with fun. <Enter sarcastic eye roll HERE.>
In my early twenties, while living with my then boyfriend now husband, I suffered a pretty serious mental breakdown. Some may call it Diabetes Burnout but it wasn’t just about that. There was more to it. Much, much more.
Drugged up and exhausted by multiple therapy sessions with multiple doctors and therapists, I was diagnosed with Body Dysmorphia, Social Anxiety Disorder and Geralized Anxiety Disorder. Quite the gift basket, eh?
When I re-entered the T1D Community in my mid-twenties there was some turbulence. That’s somewhat incorrect. There was enough of a disturbance that I ran fast and far away from all things T1D for another decade.
My honesty is not always welcomed, you see. And in that case it was really, really unwelcome. I had found and joined an online Diabetes forum. But it was full of a lot of anger and negativity. So I posted something sharing all the things I, as a T1D, found positive about my diagnosis, things I was thankful for – the backlash from that post was alarming.
And, trust me, I get it. T1D can fucking suck the bag sometimes. But that’s the key word: sometimes. It doesn’t always suck. And it can show us things, like our own strength and endurance. I’ve been at the T1D game a long time. I’ve been to hell and back, and I still think the list of positives is longer than that of the negatives.
People attacked me with their keyboards from behind their monitors. Their comments hurtful, hateful even, and I was left feeling alone once again.
I dipped my toe in the online waters about a decade later. And had a much more positive experience. Even made my first-ever T1 Diabuddy. A meeting, and friendship, that has been a catalyst for so many things. Like this gal registering to attend an adult camp for T1Ds.
Slipstream 2018 was a massive step (leaps and bounds really) outside my comfort zone. I was enticed by the prospect of meeting others like me. But my excitement was nearly overshadowed by mental health hurdles. My anxiety nearly stopped me from attending.
The experience was as overwhelming as it was wonderfully life-changing. That weekend is what I consider my real introduction to all things T1D.
The Diabetes Domain
I had no idea how many shops, IG accounts, blogs, online newsletters, YouTube channels, groups, etc. there were out there, and while it was fantastically eye-opening, I could not help but be disappointed (bitter might be a better word) on all that I had been missing out on for nearly two whole fucking decades.
On top of that borderline bitterness was that lingering feeling that I was still out of place. As I clicked through the various groups and sites, familiarizing myself with the advocates and faces of T1D, I noticed some things…
- most of the top influencers were (at least) a decade younger than me, and most of them were picture perfect;
- many of the sites were heavily focused on diet/exercise or fashion or selling products/paraphernalia;
And that just didn’t do it for me. The people, sites and groups I came across were very difficult for me to relate to, beyond our shared T1D diagnosis.
I feel the need to say this: all of those people, all of those sites, and all of those groups are important. We all have our gifts to share. And those folks advocate in their own way. I happily and wholeheartedly support a number of fellow T1Ds who have platforms and approaches very different from my own.
BUT, I also wanted (and deserved) a place to home. A place for a T1D who may be a little longer in the tooth, who may not be society’s version of perfect or who needs the focus to be on mental health.
And that is how we have ended up here with Dead Pancreas Anxiety. Because I refuse to believe that I am the only one who wants that. I refuse to believe that I am the only misfit Diabetic, that I am the only one with T1D and mental illness. I refuse to believe and accept that I am alone.
So, believe me when I say, I am genuinely curious to know how you are today.
I hope that, in the very least, you are feeling less alone.