THE BLOG
08/21/2015 01:16 pm ET Updated Aug 20, 2016

Type 1 Diabetes Betrayal

I thought this blog, which is written from my personal standpoint of living with Type 1 diabetes for 27 years, was going to be difficult to write. But it wasn't.

Because I'm an example of an adult successfully flying solo with Type 1 diabetes, and I work in the diabetes industry, AND I have been given this huge platform to express what it's like to live with Type 1 diabetes, much is expected of me. Always. Every time. And to tell you the truth, I'm exhausted by the pressure of it all and recently faced a diabetes burnout month unlike anything I've experienced in my 27 years with Type 1.

Yes, I reached out to the diabetes online community and as per usual, they were supportive and caring, but I've heard it all before, as have they. I received many words of encouragement and camaraderie that helped me remember that I'm not alone. But this time, my issue was deep and words couldn't help me out of the pit of despair I felt myself sinking into. Not about my life in general at all, only that I have to live my beautiful life with Type 1 diabetes and everything that goes along with it. And to me, it's looking more and more like I will live with this condition for the rest of my life. So I decided to try and get a true sense of how I feel about dealing with and managing, a chronic, random, life long condition with no cure in sight.

First of all, I discovered that I feel a deep sense of betrayal. In general, I'm an eternal optimist, sometimes annoyingly so and because of that, I feel betrayed by the diabetes medical researchers. Betrayed because from day one, I've been told to hang in there for five more years Peg, we will cure you! (Here buy this new blood glucose meter.) Just five more years, Peg. (Here, buy this new insulin pump! You'll love it! It's all shiny!) Be patient, stay informed, and have trust that you won't take this damn disease to your grave. (In the meantime, look how small these new needles are! You should buy some.) I never wanted to be left behind so I did everything I could to stay informed and healthy until they cured me. But now, I don't know anymore. It's been 5 x 6 more years for me and zippo. Smaller blood glucose meters, shorter insulin needles, better insulin pumps, etc. is great but it's not a cure. Not by a long shot. #someonecureme

I also feel betrayed by the general medical community at large and the fact that so many of them still don't know the difference between Type 1 diabetes and Type 2 diabetes. Really? Well news flash, I don't trust you with my care. My biggest fear is being hospitalized and having a nurse come at me with an insulin injection that is 10 times more than I need because some non-diabetes doctor on call told them to treat my blood sugar of 170. Everyone is different but for me personally, (disclaimer -- this is the case for me only and nobody else) 1 unit of insulin brings me down about 75-100 points. Ten units would either kill me or send me into a coma. Get it? I'm Type 1 NOT Type 2. Do you understand the difference yet? If you don't, then stay the hell away from me. And while we're at it, stop holding me to diabetes standards that have nothing to do with Type 1 diabetes. Got it? That's as if I were to come to you with a broken left foot and you treat and put a cast on my right foot. See how ridiculous that is? See how irrelevant and non-productive that would be? My advice, educate yourself on the difference pronto.

I've also noticed what I believe is an intrusive job application trend at various companies. They are asking job candidates to identify if they have a disability and one of the conditions listed every time is diabetes. With deep respect to those folks who live well with a disability, I won't identify as such because I don't see myself that way. But, am I? Should I change my view? Am I in denial? Right now, I'm fighting back against that perception but is it in my best interest? And here is what else came up... I don't want to be viewed as being diabetes-flawed in any way. Is that my ego talking? I really don't think so. I think it's more of a defensive attitude because I work so hard every single day to stay healthy and in control and I resent the idea that someone might think I'm sick in spite of all my hard work. And being a person with Type 1 diabetes, many of us look completely healthy and normal (whatever that it) a lot of the time and then we can look like a person with a medical condition when our numbers suddenly take us down. And so, I realized that I hide behind that anonymous dynamic. And that anonymity is the one and only thing that I fully appreciate about living with this particular condition.

Case in point, a few years ago, I was asked to be a bicycle rider in a Type 1 diabetes fund raiser/bike ride for the cure event and I was all in. Until I found out that all the people with diabetes had to wear a red vest. Now, I completely and totally understand (and agree with) the concept that this was a necessary safety guideline for those Type 1 riders in order to quickly identify and help those that might need emergency assistance as exercise can sometimes bring our bloodsugars down fast. But here I was thinking, I don't need a vest! I don't want strangers to know, without even talking to me, that I have Type 1 diabetes. It was a completely selfish and probably dangerous outlook and attitude I know, so save your scolding. However, because of that stupid vest, I stayed home. I knew that if I rode, I needed that vest, but I couldn't do it. For me to put myself on blast that I had Type 1 was so foreign to me. Ironic, I know... look what I'm doing right now. Anyway, looking back, I'm sorry I did that. Kinda. Well, no I'm not sorry. Anyway...

I'm working my way through this funk the best I can because frankly, I have no other choice. I will not give in. I will not change my perception of my condition. I will not let ignorance of the medical difference between Type 1 and Type 2 affect my health.

One more thing. Save your emails and negative comments about how I'm not setting a good example of living well with Type 1 diabetes. I've been doing that and trying my best to stay healthy until the cure for over 27 years. I just think you should know that living well with Type 1 diabetes and being mad as hell about it often go hand in hand.

Disclaimer: The opinions expressed above are my personal opinions only and do not represent the views of my clients or employer -- Peg Abernathy