This was me (on the left) ten years ago. Before I knew my pancreas was no longer working. I look at myself now and I can see the disease. I can see how thin I was. At the time, I figured I was losing weight because I had been hiking and carrying a large pack all summer. This was the end of the season, and the couple and I had spent three days hiking to Little Yosemite Valley as a base camp for a one day summit of Half Dome. This picture was taken at Wawona Point where we had left the cars parked.
A friend (who has Lyme’s Disease, has restricted her gluten intake, and seen a drastic reduction in her body’s inflammation) said to me yesterday, “I can tell when I look at someone that they have inflammation and are swollen, just like I bet you can see if someone is diabetic.”
I love my friend. But I wanted to slap her for saying, and believing, something so incredibly stupid. Instead, I sighed and chose a response that wasn’t as snarky as my first impulse (“Yeah, right, because we all wear a bright fucking neon D across our foreheads”)– I said, “I can’t tell if someone is diabetic unless I see them pull out a pancreas from their pocket.”
Simple, right? Sometimes it amazes me, and strikes me silent, when people share their
deep ignorance of diabetes. I have personally only met FIVE other people in my life who I know are Type 1, and only two were on a pump. I randomly met the two people on pumps at a coffee shop and a bar here in Eugene during the past two years. They both were incredibly gratifying encounters. I dated a man a few years before I was diagnosed and I knew he was Type 1, but I never saw him take a shot. In fact, I only saw him check his blood once when we were stuck in traffic on a long road trip. I knew he carried his glucometer with him (I didn’t know that was what it was called) because he carried it in an old leather cigar case he had found, and I simply knew he always had that case with him. In the six months I dated him I never learned anything more about his diabetes. It never occurred to me that it meant anything.
I forgive my friend. She has no need to understand diabetes to the depth that I am required to. Her ignorance is my fault for not asking her to become more aware and educated when talking to me about my disease. I’ve done some cursory reading on the internet about her disease, and I ask her questions, but mostly I let her rant when she feels overwhelmed by the loneliness, anger, fear, and anxiety (that I am intimately familiar with from my own experiences) which accompanies a life-altering diagnosis.
I have struggled from the very beginning to control my blood sugar levels. When I first started my diabetic journey, I would hear healthcare professionals call me “uncontrolled.” I hate, HATE, HATE that label. With a passion! I was personally offended every time I heard it because the only thought I had was:
“F*CK YOU! I am doing EVERYTHING I possibly F*CKING can to control this F*CKING disease. How dare you suggest I don’t control my health!?!?!”
I have come to realize that I prefer to be labeled as “brittle” or “labile.” It is important, I think, to realize and consciously accept the labels we choose to live with. The thoughts we think, and the feelings that support those thoughts, are the reality we experience.
I am not perfect. Not even close. I just shared a post on Facebook that stated, “World’s Okayest Diabetic.” Some days I do better than other days,
but every single day, without fail, I am always intensely aware of the fact that I am diabetic, and it won’t go away, and I have no choice except how I choose to take care of myself. One of the earliest lifestyle changes I made was to not tell myself I “couldn’t” eat something, but to bargain with myself instead. If there are cookies at work and I want one, I simply have to forgo that pizza I thought I would have for dinner. Some nights I will even choose to eat cookies and have pizza for dinner! My mother raised a rebel!!
I do work very hard to keep my numbers as close to 120 as I can. It is a struggle that I wish I could walk away from. It is a way of life that I wish I did not have to live. It is a regimen of restrictions that I resent and sometimes refuse to acknowledge. But the truth is always the same: I am diabetic. I am insulin dependent. I am disabled.
I am in the process of trying to request what I consider to be “reasonable requests for accommodation” at work based upon my disability of having a defunct pancreas. Mostly, I am hoping to emerge from under the oppression of being rumored as a bitch at work because people in other departments don’t know I am diabetic, nor do my bosses understand the extent of which my diabetes can affect my personality when my blood sugars are fluctuating. Like I said earlier, I have always been extremely brittle. My immediate boss simply believed the rumors of what a bitch I was because he knew I was on the pump and that was supposed to “cure” my diabetes. I had no idea he thought I was “cured.”
I live a life that makes me happy. It isn’t the life I thought I would be living when I was thirty. Nor does it resemble anything like the life I thought I would be living when I was twenty. Instead, it is the life I find myself living now that I am forty. I play soccer, drink beer, camp under 
the stars, eat out with friends, ride a bike everyday, grow my garden, practice my fiddle, and learn new ways of dealing with the depression that hounds me because of the diabetes. Everyday is an opportunity to learn something new about myself. Not everyone has the chance to test their willingness to stay alive and healthy. For most people it is a default. They simply have to wake up and get dressed and make it to work. There are no life and death moments in their daily existence. They know they are alive and that they will remain alive for at least the next twenty-four hours. It is not a struggle for them. I envy those people. But, at the same time, I wouldn’t trade places with them even if it meant having a pancreas that likes me enough to do its job on its own.
The LADA Diva 
Powerful, thoughtful insights. I wonder why the man you dated for 6 months never shared more with you about his diabetes & his life. It seems, from the outside of course, that many Type 1s keep their disease under wraps, perhaps to keep a semblance of normality (for themselves mostly?). While Type 2s are more vocal. Maybe it’s just the numbers, since 90-95% of all diabetics are Type 2. But we just don’t hear about Type 1 and it’s many, many facets, and, sadly, from my undergraduate and postgraduate nursing education, I came away with the biases that you have met head on: “Type 1 Diabetes can be controlled with careful diet & exercise. All it takes is self control. Therefore, diabetics who have wildly erratic blood sugars simply need to work harder at control.” How ridiculously wrong, judgemental & lacking in compassion. We blame the victim for the disease. Kinda like saying, “If you live a healthy life, you’ll never get cancer. So if you get cancer, it’s your own fault.”
I remember when I saw you in Vegas, just before you were diagnosed, days before you were in DKA, I mostly noticed how thin you were. I thought you looked fabulous, strong, healthy, vigorous. Little did I realize you were on deaths door. And after our nightmare experience with the Doc in a Box and we knew you were diabetic, misdiagnosed a Type 2, I remember looking at you & being frightened because I saw the cachexia. It was like my blinders had been removed, although I still didn’t realize how very ill you were. You no longer looked thin, healthy and full of vitality to me, you looked ravaged. Like the dying cancer patients I had cared for. Thin as in loss of muscle mass. Thin as in your face looked skeletal. That was my first clue, although I still didn’t really see it, as to how this disease was going to dramatically change everything. I had my biases – “She’ll do fine, she’ll mange her diet, her blood sugars will be normal, she’ll lead a full & healthy life because she’ll take good care of herself.” Biases & blindness are quite comforting.
Thank god I was partially right – you HAVE taken excellent care of yourself. And you are strong, vigorous, full of vitality. Despite a ravaging & lethal disease.
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I just found that picture cause it had been stuck away in the 2nd bedroom, forgotten. That is the only pic that scares me. I don’t think I look as bad in any other pic from that time. Maybe it is the pack that makes me look so small and frail.
I saw a post the other day asking how would you rename type 1 and 2? I think the most obvious would be to say either insulin-dependent or insulin-resistant. Who cares if one is autoimmune and the other isn’t? I have resistance at times and many type 2s become dependent on insulin even if they are still producing their own. I think if we were to start designating the disease by HOW it affects a person then we might start to reduce the amount of ignorance, misunderstandings and misrepresentations that surround us presently. At least it has been many years since someone said to me, “oh, you have the bad kind.”– Those people deserve to have the “bad kind” too, whichever kind it might be!!
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Also, I think Josh never shared his diabetes with me cause he had been diagnosed when he was 3. He had thirty years of experience by the time I met him and knew how to keep it in the background. Learning how to be in public while carrying a syringe so I could eat outside of my own home at the age of 33 gave me a VERY different experience of what I was willing to hide. I simply was too old to care what others might think of me shooting up in a restaurant. I loved the times when I would catch someone staring at me in horror and I would look them in the eye and offer my syringe to them since they were soooo incredibly interested😈😈 I think since most type 2s are adults at the time of diagnosis also, that there isn’t the fear of ridicule that kids have to face. I doubt I would be as willing to share with the world if I had lived this way my whole life. Most T1s get a sense of privacy that comes with having years of experience of trying to blend in. As an adult, it’s just not worth the damn effort!!
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