Dealing with Double Disabilities

The author, Sam DeFabio

Dealing with a physical disability on top of diabetes is something I never expected to have to deal with in my life, but like all of us living with diabetes or any other illness or disability, I have no choice. Life throws stuff at us and despite it all we have to keep going. However, unlike a lot of people with diabetes, the disease hasn’t always been a burden to me. I’ve never really related to people ignoring their disease, not giving themselves insulin for food they ate in public because they were scared someone was going to see, hiding their insulin pumps or CGM’s because they were worried someone was going to see it. Maybe when I was little I acted like that, but I’ve never thought about doing that in recent years, that I can remember. I believe the reason is that to me, diabetes makes me more “normal.”

When I was little, around 3 or 4, my parents were told I had dwarfism. This means that I’m only 3’8” and my bones are different from everyone else’s. Since that diagnosis, I’ve had 5 surgeries. I’ve always hated having dwarfism, mostly because of the height difference between me and all the other people my age. I feel like in some way, it’s harder for people to take me seriously when they see how short I am, especially kids. I’m currently in school to be a teacher, and kids definitely look at people taller than them as authority figures. When you’re the same height as them (or shorter), they’re less likely to look at you like an adult. They also aren’t afraid to say what they’re thinking, and they’re especially blunt about it. However, diabetes is an invisible disease, unless you choose to make it known—and this is why I don’t exactly mind having diabetes.

I was 10 when I was diagnosed with diabetes—later than a lot of my friends were diagnosed. I had the typical symptoms, excessive thirst, weight loss, etc. and a trip to the doctor revealed my blood sugar was in the 500’s. We spent 2 days in the hospital getting a crash course on how to manage the disease, and then they sent us home with instructions to follow up with an endocrinologist. I don’t remember much about the first few years of dealing with it, mostly because I was so young. However, I do remember first learning about communities of people with diabetes during the pandemic.  At this point, I was on the Omnipod and Dexcom G6, and had been on them for about 2 years. I had plenty of experience with dealing with diabetes and was managing pretty well on my own, but I definitely wasn’t taking care of myself like I should have been. I was terrified of going low, so I would under-bolus for everything. My range on the Dexcom was 80-250. However, by learning more about the communities available to me online, I made new friends and could finally relate to experiences people were having. Sure, I had made some friends through having dwarfism, but not nearly as many as I was making with diabetes. Finding this community finally gave me the motivation to start taking care of myself like I should have been all along.

Through taking care of myself, I found multiple positives in my life.

I loved showing off my pods and Dexcoms, not caring if they could be seen on my legs when I was wearing shorts or on my arms with short sleeves. I also found something I don’t have with dwarfism—control. I have no control over when I need surgery, when I can’t participate in physical activities because it’s too dangerous for me, or missing out on events because they’re not accessible. However, I can make sure I give myself enough insulin at meals, so I don’t feel sick later if my level goes high. I’ve learned which foods make my body more resistant to insulin, and when I need to correct more because my levels are stubbornly high. I know there are some moments when I definitely feel like I don’t have any control, and there are frustrating moments that make dealing with the disease feel impossible. But overall, I feel like I have a lot more control with diabetes than I do with dwarfism, and that’s refreshing to me. I also feel like having diabetes is the more “common” condition. I’m more likely to see someone with a pump or Dexcom out in public and strike up a conversation with them than I am to see someone with dwarfism. 

I’m definitely very grateful for the communities I’ve found through having dwarfism and diabetes, but I’m especially grateful for the diabetes community for giving me some sense of normalcy in my life.

I know that’s unusual to say, but I’d say about 70% of the time, I don’t mind having diabetes. I now have my Dexcom range set at 70-180, and I’ve become more comfortable with letting my level exist in the 80’s and 90’s. I’ve been living with it for so long now that I don’t even bat an eye when I have to give myself insulin or treat a low—it’s like second nature to me, something I’m sure a lot of people can relate to. I love looking forward to new technology and seeing what other devices are available for me to use, and I love reading new research and learning more about how I can improve my health as a diabetic.

Diabetes has given me more lessons in life than I could ever imagine, and that’s what I’m truly grateful for.