How Much I Share with Others About my Type 1 Diabetes
Growing up I was always open about having Type 1 Diabetes. I rarely hid the fact that I had this autoimmune disease. Eventually, I learned that many diabetics aren’t as open as I am. They don’t share that they have type 1 diabetes with new people. It’s not a requirement for anyone with a disease or disability to broadcast the fact that they have one. And that’s totally okay, you should only do it if you’re comfortable. Everyone has their own reason for sharing or not sharing any part of their lives, including having a disability.
High School Support Group
In high school, one of the councilors started a type 1 diabetes support group. (It was probably called something else, but I can’t remember). Everyone at school with type 1 diabetes was invited to meet once a month during class time, to talk about living with diabetes. Talk about the good things, the bad things, and the neutral things. At the time, I was surprised and didn’t understand why a type 1 diabetic would need a support group. I had convinced myself that I was fine and definitely not hiding any complex emotions about living with type 1 diabetes. I was just happy that I had a good excuse to get out of class once a month.
At this support group, I learned that there were more students at my school than I thought with type 1 diabetes. One of them, who never came to the group, was one of the football players (and one of the better ones), but he didn’t tell anyone. He didn’t agree to come to these groups because then people would know. He hid his insulin pump in his baggy pants. And instead of coming to the nurse’s office to check his blood sugar numbers, he would check them by himself in the bathroom. He had made the choice to not share this with anyone, for his own personal reasons.
Dating with Diabetes
Over a decade ago, one of my friends told me that when she is on a date with someone new, she never tells them that she has diabetes. When she needs to check her blood sugar or inject herself, she excuses herself to the bathroom to do it in private. She waits about a month into dating someone new to tell them. I have another friend who didn’t realize that she was dating a diabetic until they were getting physical and she felt and saw his continuous glucose monitor.
In my personal experience, I’ve found that men don’t share that they have diabetes because they don’t want to come across as weak. And women don’t share because they don’t want to be a burden. No matter the reason, most people I’ve encountered don’t share that they had diabetes. I don’t know if I was taught not to be ashamed of it or if it was just my outgoing personality, but I still share it with most people I meet.
College Realization
In college I realized that although I was sharing the fact that I had diabetes, I wouldn’t share any more information about diabetes other than that I had it. I wouldn’t share what my carbohydrate counting ratio was, that I used a carbohydrate counting ratio, that I am on two different types of insulin, and what those two types are. I wouldn’t share the reasons why I have to always check my blood sugar number, and the immediate dangers of going too low.
The only thing I would share is that I have diabetes and nothing more. I was (and am) good at putting on a face that I was doing great and could do everything by myself…. which wasn’t true. But I had learned from a young age that I had to do everything on my own. I had to prove that I was very strong. (Asking for help isn’t weakness, it’s strength. Logically I know that, but emotionally it can be hard).
Still Holding it Back
I became aware of this during college, when hanging out with one of my best friends’ high school friends. This friend was telling me about his girlfriend who has Type I Diabetes. He started asking me what my carbohydrate counting ratio was, among many other questions. The answers to which I hadn’t shared, not even my best friend who was with us. After taking a mental pause, I began answering his questions. But in the back of my mind, it got me thinking. Why haven’t I shared these with anyone? At the time I genuinely thought I was doing a really good job sharing.
At the time of writing this, it has been 13 years since I gradated from college. And I am still working on sharing more and working through all of these complex emotions. For me, it is important that I share this part of me, the dangers and preventative measures. There are times that I do very well and share with new friends, either in person or over the phone about how dangerous it is for me to have low and high blood sugar. There are other times I’ll be stuck in a conversation with someone ignorant to the problems, emotions, and reasons why type 1 diabetics would need help. And through tears I explain why I (someone with type 1 diabetes) might need occasional help from someone like them (someone without type 1 diabetes). I can see why people don’t bring it up. It can be very emotionally taxing.
Sharing and Caring
Even though there are people out there that choose not to learn and don’t seem to care, it doesn’t mean that we’re alone. There are helpful people out there too. I went on a hike with a new friend who knew I have diabetes. Before the hike she asked me what I was packing, what was a dangerous number, and how she could help. This was an incredibly positive experience, that I wasn’t used to, and I liked! You can read about another positive experience I had when I was in a worm cave in New Zealand.
Sadly, not all experiences with others are positive. Everyone has to deal with people who pose problems to them and their wellbeing. All I can control is what I do. I can share that I have type 1 diabetes with people and share all of the things that can happen. How others respond is up to them, even if I don’t always like how they respond. Read about some people’s positive and negative reactions to my diabetes here. With work and support, I can and do live a great life. I cannot control how people will react to that and how some people might try to use it against me. (Stay tuned for a post about how someone used my diabetes against me in the workplace.)
I can only speak to the fact of sharing and hiding feelings about having type 1 diabetes. But after talking with others with other disabilities, diseases, and complications they can feel the same way. Especially for those with “invisible disabilities”. You can never guess a person’s story just by looking at them. I try not to make assumptions on how others live their lives. We would be better, as a society if we (including myself), took more time understanding and asking what others need. And doing so without isolating them and making them feel ashamed. Everyone has a story and everyone has a past. By working together, we can try and making everyone’s future a bit better.
