Like with a lot of things, you were patiently waiting for it to be over… when we told you it wasn’t going to end, you just took it quietly.
Jasmine Amerasekera
As National Diabetes Awareness Month comes to an end, I wanted to share a Q&A from a diabuddy of mine.
Jasmine Amerasekera and I went to the same school (Parish Episcopal School in Dallas, Texas) our entire lives and while I’m 3 years older, I remember casually seeing her in the nurse’s office giving herself insulin before lunch periods or treating a low with juice boxes; not knowing of her T1D diagnosis at the time.
Jasmine reached out to me recently after reading my bio in our alma mater’s newspaper and was surprised to find out I was diagnosed with type one diabetes in college. She was excited to see a fellow alum/diabetic in the community after so many years of feeling alone during her time at Parish.
Jasmine’s story is your reminder that diabetes is not a one-size-fits-all. Read her diagnosis story and how she chose to tackle T1D both as a young child and an adult. She also shares great tips for when you are feeling defeated and burned out.
1. What do you remember from the day of your T1D diagnosis?
Some of my earliest memories are from my diagnosis, but they are mostly in short, very vivid snippets. I was about one month shy of my third birthday. I remember being very ill in the days leading up to my diagnosis, especially on Halloween when I had dressed up as a bride but was too sick to leave my bed to even say hi to the other neighborhood kids when they came to the door. I remember the hospital very well, it was the Children’s Hospital in Dallas. There was a working model train in the lobby that my parents would take me to see once I was well enough to walk around a bit. I remember receiving visitors in my hospital room and some of them brought gifts that I kept for a very long time and even some I still have. I loved inviting people to sit down on the bed next to me and then pushing the buttons to move the whole thing up and down when they tried. I was only there for 3 days, after which they sent us home with a couple of Rufus and Ruby teddy bears from the Juvenile Diabetes Research Foundation and a few picture books for educating children and basically said good luck.
2. What was your first reaction when you found out?
I don’t remember much of this myself, but I think I was probably not very understanding of just how much this would impact my life and how different it would be from then on. I asked my parents if they remember and this is what my dad replied: “You didn’t really know what it was, but knew that you were ill. About a couple of months later you asked us when you would be well again and not need to take medication, etc. Like with a lot of things, you were patiently waiting for it to be over… when we told you it wasn’t going to end, you just took it quietly. I think you felt like you got an answer and that was sufficient at the time. But you definitely decided that you did not want to go back to the hospital. You made a promise with Caroline [Mitchell, my classmate at Parish and best friend] about that if I remember.”
3. What resources have been of help to you?
I had a great set of pediatric endocrinologists growing up, who were very helpful and empathetic. In adulthood, I’ve turned to social media, Twitter especially, where there is a large and vocal community of all types of diabetics who are quite helpful with questions about lifestyle, insurance, the healthcare system, access to supplies, etc. My greatest resource in my life has always been other people with type one diabetes, and I find that our community is always very eager to help each other out in any way that we can.
4. Any advice you have for new diabetics?
Find other type one diabetics. Diabetes can be hard to navigate alone, both from an emotional aspect and logistical one. Organizations like the JDRF or the ADA will sometimes have conferences and summits, sometimes free or not very expensive, and if you can attend something like that you definitely should go to meet other people who can understand what you’re going through. If you’re a kid or a parent with a diabetic child, look into what summer camps for type one diabetics might be available to you, they even have day camps for kids who aren’t ready to go to a sleepaway camp. These places are also great resources for more information about type one diabetes, since their keystone is always their educational component. Make sure that your friends, teachers, coworkers and other people around you are educated on your disease so that they can both be more supportive and empathetic and also so that they can react in an emergency situation, and get yourself a medical alert necklace or bracelet. I’d also like to emphasize that everyone is different. What works for some T1Ds might not work for others, so don’t feel like you have to follow the crowd when it comes to lifestyle or technology choices. Whatever gives you the best control over your life and let’s you feel the healthiest—do that.
5. How do you manage diabetes with every day life?
I make sure to be really open with the people around me about what I need. If I don’t feel well or need to step out of a meeting or class or any situation to take care of a low blood sugar, I explain why T1D is contributing to that. I also try to be really kind to myself. Our blood sugars can be affected by almost anything—food, stress, hormonal changes, exercise, the weather—and it doesn’t make sense to beat ourselves up when our blood sugars and control are really composites of all of these factors plus a thousand tiny decisions we don’t even know we’re making all the time. It can be easy to try and point out one thing you did and blame yourself for making that mistake, but make sure that it is constructive and empathetic feedback in the context of your life, not harsh and unforgiving criticism. I once heard from an endo of mine that there are no “bad” numbers, only data. I try my best to remember this, and that makes managing every day stuff seem a lot less daunting.
6. What devices do you wear? Are there any other products you use that make living with T1D easier?
I use a Tandem T:Slim insulin pump with the Dexcom G6 CGM sensor. In all the years I’ve had diabetes, the single thing that has made living with T1D easier has been the closed loop system. I was never able to get my A1c below a 7.0 until the closed loop system, and it also helps me sleep at night knowing that if my blood sugar starts to drop it will wake me up.
7. Explain how it was to manage diabetes in college.
I won’t lie, I had a difficult start with managing my diabetes in college. I was still taking injections and despite having had diabetes for years at this point was struggling with social anxiety around it, probably due to being in a new place where people weren’t aware of my T1D as they’d been at the school I’d gone to for my whole life. Luckily, I found out pretty early that T1D counts as a disability under the Americans with Disabilities Act and I was able to receive accommodations from the university because of that. That meant that if my blood sugar went really high and I had to miss a class or a test I was more easily able to explain this to my professors and TAs, and even if they didn’t understand what I was going through they had to accept it because I was protected by my accommodations. I also had accommodations during exams so that I could bring in juice and snacks and check my blood sugar as needed and even get extra time to do these things. After a pretty rough year and a half of really unstable blood sugars, I decided that the multiple daily injections were not working for me and switched to the insulin pump, which really helped a lot. Now I could be more discrete about taking my insulin, which meant I was more likely to take it when I needed it and not wait until I was alone. It was definitely much harder to handle diabetes in college than when I was a kid and had my parents to help me with everything, but it was an important step in my transition to adulthood. Learning to be a diabetic on my own had to come sooner or later, and college provided the catalyst for that—it was a steep learning curve but in the end I knew a lot more about my T1D and myself.
8. How has your support system been of help to you as you navigate the highs and lows of T1D?
I am lucky to have a wonderful support system. My parents have always been my biggest advocates and a huge resource to me—they’ve always done their best to take some of the burden of T1D off my hands, and they’re always staying up to date with diabetes news and technology. They have spent many sleepless nights with me when my blood sugar was going low in the middle of the night. They educated my teachers and classmates at school so I never needed to worry. They have been very involved in the community and organizations with other parents and people with diabetes, asking for and giving advice based on their experiences. When I need help deciding between doctors or insurance plans or insulin pumps, they’ve done the research with me. And those are only just a few examples! I also have a boyfriend who I have been with for almost 7 years who has been a lifeline to me in adulthood. He took it upon himself right from the start to educate himself on type one diabetes and learned how to count carbs, the differences between recognizing and treating high and low blood sugars, and also understanding the emotional weight of T1D so that he can support me without me needing to explain myself. I don’t even know how I would navigate the highs and lows of T1D without my support system.
9. Does it ever get easier? Are you used to it by now?
I’ve seen both the technology and the rhetoric around T1D improve drastically throughout my life. Unfortunately, there are still a lot of issues around accessibility to this technology and even just the basic need of insulin for us. But it is really heartening to see more people talking about it and more awareness being granted to our struggles. As far as the day-to-day living with diabetes, it definitely gets easier—for example, carb counting is almost second nature to me. I no longer struggle with social anxiety around diabetes, fortified by the community on social media that has fully propelled us into the continuing body positivity movement. I think humans are really resilient, and as long as we have the right tools we can rise to so many difficult challenges.
10. Are you a part of any diabetes organizations? Participated in any walks, raised money, etc.
I used to be quite active in a couple of organizations. I did the JDRF Walk to Cure Diabetes (now called the OneWalk) every year as a kid and got all my friends to join me. My family used to raise upwards of $10,000 some years thanks to donations from some amazing friends and family members. I also volunteered as a counselor and nurse’s assistant for a camp that the North Dallas chapter of the American Diabetes Association put on called Camp New Horizons after attending it myself as a child. I personally am not super active in any large organizations anymore, participating more often in mutual aid efforts online for people who are struggling to access their supplies and insulin, but my mom is still a very active volunteer in JDRF especially, as a mentor to newly diagnosed families and others.
12. When is your diaversary?
November 4th, 1998. It complements Diabetes Awareness Month perfectly! I just celebrated 23 years since my diagnosis.
I want to thank Jasmine for allowing me to share her story!
Just because NDAM is over, our constant battle of living with type one diabetes never ends- T1D is a full time job with zero PTO.
As Jasmine explained, what works for some T1Ds might not work for others, so don’t feel like you have to follow the crowd and compare yourselves when it comes to lifestyle or technology choices.
There are days where we are just plain tired of it all and days where we feel like we can conquer the world. It’s important to surround yourself with a community who is not only educated but who supports you throughout your daily highs and lows.
Let’s celebrate eachother today and every day because we’ve made it this far.
Happy National Diabetes Awareness Month! 💙
livingdiabetter 