I put out the word on episode 15 of my podcast... If anyone in the diabetes online community didn't have their own blog and wanted to participate in Diabetes Blog Week, I'd host their blog post here on Arden's Day. Almost immediately, Kelly Griffin emailed me to say that she wanted to contribute a post. Initially Kelly considered writing anonymously but late yesterday she decided to not just attribute her name, but also her face to her writing. Kelly may not have been completely "out of the shadows" when she wrote this blog post... but she certainly is now! Please help me welcome Kelly into the light... - Scott
Keep it to yourself...
Thank you, Scott Benner and Karen Graffeo, for giving me the opportunity to write about a topic that seems to define my life with type 1 diabetes. To give a brief history, I was diagnosed with type 1 diabetes about 13 years ago. It was a puzzle to my doctor at the time, who assumed because I was in my mid 20's, I must have type 2. It was actually the CDE (Certified Diabetes Educator) who determined that I was mostly likely a type 1 in a “honeymoon” phase. She turned out to be correct, and I quickly found an endocrinologist who helped me move to MDI.
That was a time of significant transition in my life. I had been a professional student since undergrad, and was about to move to New York City to pursue a performance based career. When I shared my diagnosis with some people in the industry, I was quickly told to keep it to myself. They cared about me, and worried I might be looked at differently, or miss opportunities because I would be perceived as ill or somehow incapable. I didn't question it. Be it right or wrong, that was the way it was, and I adhered to that. I worked very hard to make sure that no one knew about my type 1.
I spent my whole life studying and preparing for this career, and I couldn't let my diagnosis become an issue now.
Since diagnosis, I have been in pretty tight control of my diabetes, but at one visit I expressed frustration to my doctor about the amount of injections that I was giving each day, and that it was becoming harder to explain my trips to the restroom before every meal. For years, my endocrinologists have wanted me to be on a pump, but I refused because I couldn't image how in the world that would work in a quick costume change backstage. I could have several people helping me in and out of complicated clothing. Where would the pump go? How could I do this so that they wouldn't know?
Now that I think back on it, that was my first glimpse into the DOC (Diabetes Online Community). I found forums of people talking about this “tubeless” pump. I started looking into it, and thought that might just work. I could easily hide it under a camisole while in a stage production, and no one would ever know. So, I started pumping with the OmniPod about 8 years ago, and have been using it ever since.
Secrecy has its burdens.
The longer I live with T1D, the more I feel the need to talk about it with someone. I need community. When you are diagnosed as an adult, you never have the experience of anyone else taking care of you. I know this is naïve, but I sometimes envy hearing about people diagnosed as children. I wish that my family knew what I deal with on a daily basis, and how hard it can be to stay in control. I have been the only one in my world who knows what I am going through.
It was 13 years before I met another person with type 1. I actually saw an article about this woman in a local publication, and semi-stalked her on Facebook until we were able to meet for coffee. It was the most amazing experience to sit down with someone who pulled out a pump that was “alarming” during our meeting. I am not the only one? So, I'm not the only one who sits with one arm digging into my abdomen for 3 hours in a live theater performance trying to muffle the sound of my pod beeping away? I'm not the only one who tries to discreetly light up my Dexcom screen in a movie theater to check my numbers? I'm not the only one who sits in fear of my Dexcom vibrating during church every Sunday?
That meeting was so incredibly freeing, and it left me wanting more connection. I quickly delved into the DOC at that point. I found Scott Benner, Diabetic Danica, Kerri Sparling, and Cherise Shockley, to name just a few. Most of these people have no idea who I am, but I feel like I have community through their efforts, and I cannot express my gratitude enough. I am amazed at the strength I see in the DOC. The women, men, and children, who proudly display their pumps with or without tubing, check their blood sugars in public places, and post online without reservation or worry about what their professional colleagues might think. Those of you living boldly and out loud, inspire me.
I am choosing to walk out of the secrecy a little bit at a time. I'm not completely out of the shadows yet, but I'm working my way there. I see that I have to be bold if we're ever going to find a cure. I have to find a way of being comfortable speaking up. This is my first step, and I thank you for the opportunity.
What a wonderfully honest and brave post from Kelly - bravo!
Remember, anyone that wants to write for blog week and doesn't have an outlet for their words only needs to email me - I am happy to give your writing a home. - Scott