It was Dec. 16, 4:20 p.m., 1988 and the reason I know this date/time so specifically is from the time code on my old video recorder. As a young wife, my husband was filming me, as I was being silly and hanging up ornaments on our Christmas tree. In the faded VHS video, you hear the phone ring. My husband then films me as I go towards the phone and pick up the receiver. At that point, he turns the camera off. And the reason that I write of this event here is because that was the call from my doctor telling me that I have Type 1 diabetes. That was the phone call that changed everything and I have it on tape, documented forever. The ultimate reality show clip no doubt.
I've always been different. Not just a little different, but a lot different. I'm aggressive and passive, loud and quiet, passionate and extremely curious. (Not unlike Type 1 diabetes I might add.) I'm a strong, sassy woman who has no problem with ruffling feathers, blazing a trail and generally eliciting either admiration or shock from those in my circle and I like it that way.
Years ago as a young diabetes sales representative, I was once asked to be a part of a team that was formed with the purpose of designing a diabetes field sales lap top computer program. This was a huge honor; even the President of the company was a part of this big corporate initiative. When I got to the meeting, I was the only woman in the room, (not uncommon for me in my early career) and I participated enthusiastically, asking lots of techie questions and contributing programing ideas along with everyone else. After the meeting, the President of the company came up to me, pointed his finger in my face and told me that I was noisy. I wonder if he would have said that to me if I were a man? Funny thing, later that year, I won a big sales award and he had to sign a large bonus check made out to me, shake my hand, give me a plaque, take a picture with me AND sit next to me at the awards dinner. I never stopped smiling. Later, I was nicknamed The Converterator because of my negotiation and sales abilities. Which brings me to the point of this article and a group of people that I have named, the Diabetes Converterators: Diabetes folks who push their own treatment modality onto other Diabetes folks.
My personal experience with the Diabetes Converterators began very early into my diagnosis of Type 1 when I went to work for a small diabetes company in Los Angeles. Most of the people who worked there had Type 1 themselves or had a close family member who did. Every single one of the people in my department wore an insulin pump except me. Insulin pump therapy, at the time, was a newer consumer medical device that delivered insulin to the body around the clock and on demand via a small cannula under the skin. It was quite innovative and it led to the awesome smart pumps on the market today.
Yet I was scared of it. There was no robust Internet to do research about the technology or how best to use it for my personal lifestyle. And so, I kept putting off getting one for myself and as a consequence, every day I had to endure being bombarded by my well-meaning colleagues and friends about why I wasn't on an insulin pump?? Why, Peg? What's your problem Peg?? WHY? WHEN? WHY? In short, I was pretty much bullied into trying it. And since one of my colleagues told me that the pump was her cure, I was finally convinced. I wanted a cure too. So I made the call and ordered my first insulin pump and went all in.
Big mistake.
The problem was, I simply wasn't psychologically prepared to go on an insulin pump with the limited support resources and knowledge about pump therapy in general at the time. (This is vastly different in today's world.) It just wasn't the right timing for me. Even the huge Los Angeles earthquake where I lost access to my insulin for a time, and was grateful to have my pump attached to my body, did nothing to convince me that pump therapy was the right thing for my lifestyle. After the massive earthquake, I remember standing in my front yard in the middle of chaotic hell when I glanced down at my pump. For a moment I was grateful that I had it, that I didn't have to try to rummage through the house to find my insulin in my destroyed kitchen. But after that fleeting moment of gratitude, all I could think of was, stupid diabetes. Crazy, I know, but true.
And so, I hated that pump and everything that went along with it. The pump was certainly not my cure. The pump was a constant reminder of my condition and it irritated the hell out of me because, on some level, I think I was seriously of the mindset that someday, this would all go away and the nightmare of Type 1 would be deemed a mistake. Remember, it was early into my diagnosis and I still continued to hold out for a cure. After all, I kept being told that a real cure was only five years away. (Sound familiar, fellow Type 1s? Yeah, right. Whatever.)
During that time, I remember speaking at an event where I introduced the concept of insulin pump therapy to an audience of Certified Diabetes Educators. My enthusiasm was evident by my passionate delivery of the program. But honestly, I felt like a phony, because deep down, I hated my own pump. Even though I agreed with and promoted its value for others, for me personally, at the time, I hated it. And so, eventually I went off the pump and went back on shots for four years, which was also utterly dreadful. I was mad, burnt out and trapped by my decisions. I hated the pump and I hated the shots. I was miserable.
However, after four years, a new pump that fit my lifestyle came on the market. I tentatively went back on pump therapy, but this time I was fully prepared, supported and informed. And now, it is a hugely successful part of my personal treatment modality and it is a device that I would never want to live without. I am extremely enthusiastic and passionate about pump therapy, so much so that one day, I recognized that I was slowly becoming one of them, a Diabetes Converterator.
My wake up call was when I talked a Type 1 friend into trying the kind of insulin pump that I was using. Due to my enthusiasm and relentless encouragement, she reluctantly agreed to try the new pump for three weeks. The end result was that, after those three weeks, she told me that the very thing that I liked about my pump was the very thing she disliked about it. She looked miserable and kept apologizing for failing with the new pump. And then it hit me. I felt terrible and sorry that I had put her in this position. She didn't owe me any explanation or apology at all. It's one thing to inform someone about something new or something that you feel might really help them and I'm all for that. But after telling one of my diabetes tribe about something new or showing enthusiasm for how it has helped me and/or might help them, that is where I stop. I'll admit that it's sometimes hard to stop, especially when you just know that this is what they need. But seriously, when a person is bullied into trying something that they are resisting, it can have the opposite effect. We each deserve the right to make our own diabetes treatment decisions based on our personal lifestyle, medical history, support system and of course, our healthcare team. So I apologized to my friend and vowed to hang up my Diabetes Converterator hat forever. Actually, I burned it.
As I said earlier, I wear and LOVE my insulin pump, and I also rely on my beloved Continuous Glucose Monitor. (Yes, I wrote beloved -- slow it down Miss Converterator!) I use diabetes apps and accessories. I follow innovative device and support websites and stay on top of all technologies and treatment options and I'm an enormous and enthusiastic proponent of this...for me. Even though I will openly share my personal experience with medical devices, I will not join the Diabetes Converterator army and broad stroke and marginalize my fellow diabetes tribe members by inundating them with my big fat opinion. We are not a collective whole; rather, we are individuals whose diabetes experience is as unique as a fingerprint.
Working in diabetes and having this blogging outlet, I am often times, approached by Diabetes Converterators who, through good intentions, try to ram their diabetes opinions and treatment options down my throat or even shame me into trying something that I know is not a good fit for me. Recently, I've been seriously besieged by well-meaning but aggressive Diabetes Converterators who are advocating a certain treatment option. Have you heard of it? they continually ask. (Yes, of course) Why don't you use it? (Not that its any of your business, but it's contraindicated in my personal medical condition -- surprise!) and on and on and on and on.
I won't accept diabetes bullying from a doctor or a corporate agenda so why would I accept being bullied into someone else's treatment modality by one of my own diabetes tribe members? Being continually confronted by a Diabetes Converterator can cause undue stress, self-doubt and judgment, which can cause even more pressure than we already have and which most of us fight on a daily basis. We simply do not need this from our peers. I can still remember how I felt when I would see the look of disgust, distain and judgment from my colleagues all those years ago as they bullied me into getting on an insulin pump when I wasn't ready. I felt betrayed by my own tribe, actually. And I felt that they didn't trust my own judgment about how best to take care of myself. #diabetesfail
All I know is what works for me personally. Living with and dealing with diabetes is hard enough. We don't need an army of our peers coming after us with guns blazing. So, back off.
Love you. Mean it.
- Peg