Disability

I was going to start this post with, “When I think about my Type 1 Diabetes…” But the truth is, I almost never think about my Type 1 Diabetes. I especially do not mention to people that I have it—I leave people to find out on their own. I do not see it as something that defines me, and I only bring it up when absolutely necessary. Much like my research on muscle memory, the everyday efforts to maintain my T1D have become so engrained in my thought process that I tend to take up very little day-to-day time actively thinking about my disease. Sure, I have to take the time to put the needle onto my insulin pen, or take the time to give myself a shot before bed, or take the time to test my blood sugar four times a day. But when it comes down to it, I really do not think about how diabetes affects my life simply because it is now a part of my life. My life includes diabetes. 

I believe this mindset was only encouraged by one of the most important people in my diabetes journey: my nurse practitioner Lori Bush at Children’s Hospital of Wisconsin. From day one, she told me that I was never to sacrifice anything I wanted to do because I now had diabetes. That was unacceptable and would not be tolerated, because with proper management, T1Ds can eat what they want, do what they want, and have pretty much no limits in life. There are very few things T1D can prevent people from doing, despite what common knowledge might be (e.g., “Can you eat that piece of cake?” I can, and I will).

In part because diabetes is so inseparable from my life itself, I recently had a reframing of mind when I encountered a voluntary disability form provided to all graduate student workers at the university. At first, I glanced at it and thought, “This does not apply to me—I have no disability, mental or physical.” But upon closer inspection, I saw “diabetes” listed on the sheet along with words like blindness, autism, PTSD, cancer, missing limbs, and epilepsy, among others. Partly because I do not consider diabetes a disruption to my life anymore, for a brief moment I could not understand why something like missing a limb or being unable to see was on the same level as what I experience. I was reluctant to place myself in the same category as other disabilities because I have always felt that, although a definite inconvenience and an unpleasant one at that, diabetes is not really a “disability” in the vernacular sense of the word. Nonetheless, I checked the box and moved on with my other forms. I thought about it some more, but I was still skeptical.

But then a few things happened that made me challenge my own opinion, in true anthropological style. Firstly—as I have had to do many times in the past—I needed to stop a workout about halfway through because I could feel my blood sugar level dropping. Usually this is quite easy for me to sense; I start to shake, I sweat a little bit, and I get a particular type of lightheadedness that causes me to lose focus. On this occasion, I had just finished an amazing cardio session and was about to start on my weightlifting set for the day. The gym was quite crowded, so I got one of the thick mats to sit on and retrieved some fifteen-pound bells to start on my upper body work. However, once I began a set of triceps extensions, I started to feel a low coming on. Often times I get “false” symptoms, since I might have experienced an extreme drop in blood sugar simply because of the amount of cardio I just performed. But today it felt more real, even if it did not seem concerning. So I had to make the conscious decision to stop my workout without even having finished the reps of my first exercise, get up, and leave the crowded gym. I already have feelings of imposter syndrome when going to the gym, despite being a regular attendee for about five years now, so this is never something I can do easily. I always feel as though the athletes around me will wonder why I “gave up” after only one incomplete exercise, or even why I was over there to seemingly do almost nothing before leaving again. But I left, and I drove home without issue.

When I tested, I was 45. To give some context, my target number is 110, and my range of acceptable levels ends around 80. Usually when I test for a low, I end up being around 55-65. I have not been 45 in quite some time, and it was a scary moment for me. Against what is probably logical, I do not wear medical ID in the gym. If I were to have passed out from hypoglycemia, it would have been unrecognizable to most people around me. Though I have gone a full ten years without this happening thanks to responsible management, it is still a very real possibility. That really hit me. So not only did I have to face one of my anxiety triggers by leaving the gym early, but I also lost control of my body—albeit temporarily—in a way similar to those who have lost their sight, their hearing, their range of motion, or their limbs.

The next thing that happened was an inclusivity workshop for new TAs sponsored by the university. I went because I thought it would be not only helpful, but essential for teaching a class like anthropology. Little did I know that upon reading the leader’s sample inclusivity statement, I would be reminded of my own experience. Her statement read, “If you believe that I should know about a disability not on record with the disability center, you are welcome to discuss it with me.” This is a familiar habit that I have—going up to the teacher or professor on the first day of class to inform them that there might be times when I need to eat in class or excuse myself to find a snack because my blood sugar is low. I have obviously never encountered any resistance to this method, but I still have had to take the time to inform the professor that I might need to be given an allowance in situations like that. Though I had never thought about it as a disability allowance, I now saw that it kind of was. 

In the end, I am so thankful that Lori taught me from such an early age that my diabetes does not define me. I am also lucky in the sense that my disability is both invisible and unharmful to the rest of my mental and physical health—unlike other invisible disabilities like PTSD, anxiety, and depression. I can and do go through life without people knowing that I am in any way different. I test under the table at restaurants; I dose insulin in the bathroom at school. I can hide away the visible parts of my disability, and I do so for many reasons. Some people get queasy at the sight of blood. Others faint when they see needles—even I still have vasovagal needle phobia (inherited from my mother, thank you very much). I had to overcome my fear of my T1D needles specifically so that I could survive, as did my mother. I recently found a slip of paper from when I was in the hospital, on which she had written a variety of positive affirmations to get over her fear of needles after my diagnosis. The one that stood out to me the most was: “Do this for her, because you love her.” Even though we both still get lightheaded at the thought of, sight of, or encountering of needles for things like vaccines or blood draws, we have now both learned to isolate diabetes needles from the rest of them. We had no choice, no control in deciding that. Once control over a situation becomes removed, I suppose it is a dis-ability—“dis” being the Latin prefix for removal or reversal. My ability to control my body and my life has been removed in some way. Even if I have never allowed it to be a hindrance or an excuse, diabetes still removes ability. My life, my survival depends on maintaining consistent blood sugar levels and keeping up with my insulin shots. I very rarely think this way about my diabetes, mostly because I refuse to let it rule my life. I never like complaining about something that I cannot change. This is about the most obvious thing in my life that I cannot change.

But by not associating myself with having such a life-changing disease, I have also done my loved ones and myself a disservice for all of the sacrifices we have made over the years to help me grow into the person I have become. Though things like my mother always carrying candy corn in her purse in case I went low might seem like nothing, in the long run, that candy corn box has silently been waiting until I need it for ten years. I don’t think about it unless I need it, but it’s always been there. My blood sugar meter and my insulin pen have traveled with me to Europe, Japan, Ireland, and all over the United States. My spare insulins have to be refrigerated, even in countries where fridges are not standard in hotel rooms. They have lived overnight in kitchen and restaurant fridges, wrapped in paper bags and taped shut. Sometimes, I cannot make myself care to put them in refrigeration, because I am so bothered by having to find them a cool home for ten years. There are moments like this, when I get so mad and fed up that I just let myself slip from responsibility. I try to regain my ability, if only for a fleeting moment. But then I remember that those insulins cost money; my body needs a shot of insulin to feel normal; I will get a horrible headache if I skip a shot because I’m having too much fun somewhere. There are consequences to my actions, which have caused me to dissociate my life with one of disability. From now on, I hope that I can reconcile the idea of disability with my staunch belief that diabetes does not define me, or what I can do. People often say to me, “Well, I suppose now you’re used to it.” I will never be “used to it,” no. I will live with it, only because I must. I will be responsible about it, only because I want to stay healthy. I will be stubborn toward it, only because I want to continue eating and doing the things that I love. But I do not have an excuse, or a crutch, or a life-ending diagnosis. I do have a disability.