I was halfway through college when I was diagnosed, so I took on my new life with T1D all on my own. In hindsight, I probably wasn’t able to take on life with T1D totally alone. I didn’t live with my parents and my friends didn’t really know how to support me, even though they tried. I was in and out of the hospital and constantly sick for my first two years after diagnosis. When I graduated college last May, I moved to NYC to work at JDRF. My life changed so much when I met other people with T1D for the first time.
I realized what I was missing after meeting several new dia-coworkers. They’re there for me all the time, like when Brian bought me low snacks to keep at my desk or when Kady got me involved with clinical trials. Like the times Arielle chatted about the struggles in life with T1D over lunch, and when Lala gave me tips about eating different foods. I feel support when Aamna and I check on each other every morning since we became roommates, and when she lets me borrow her juice when I run out.
My three year diaversary is in a couple of weeks, and I finally feel like I know what I’m doing with T1D. I couldn’t be happier to have found that my greatest supporters are the people who sit right next to me every day.
Who are your greatest supporters? How has the T1D community impacted you in your journey with T1D?
Must say I am kind of jealous that you have such personal interaction with other T1’s! My only real support has been through online forums like this one and a couple others. I missed the walk this year, but will definitely be going next time.
I’m envious, too! After 32 years with T1, I have only had meaningful interactions with a handful of others with it, other than seeing people at the walks or a pump seminar, and have only been in a position to develop a real friendship with one. I met her last year at jury duty and we hit it off, but sadly she and her husband recently moved out of state for his job, and now we only keep in touch through FB. Honestly, I have not found many people very open to discussing their T1D. Not so much that they are in denial, but they just don’t want to talk about it much. I’m at a point where I have a couple of mild complications and have wanted to reach out about that, but frankly it seems like no one wants to talk about complications, as if it’s something shameful. I understand it’s uncomfortable and not fun, but it’s part of the ride for most of us despite our best efforts, so I wish we could be more open about it. Even people who have complications are in denial about it (e.g. “50 years with T1D and no complications! Well, except for two retinal surgeries a few years ago, gastroparesis, and the neuropathy in my feet…”). I wish it weren’t a source of shame, but rather a way to talk about ways to work through them and a means to support each other. Thankfully with the internet there are lots of forums like this to connect with people nationwide, even globally, and we can feel less alone. So cool that you work for JDRF!
Thanks so much for starting this Sarah! It’s definitely great to have support at JDRF - before I joined the team, the way I met other people with T1D was by getting involved in JDRF events. One Walk is fun, but the events that really allowed me to meet and form friendships with other people with T1D were the Chapter events like JDRF Georgia’s Rock the Cure, their AT/T1 Challenge hike, etc. I know each chapter has lots of events like that
My greatest supporter wise, I have to say mine is my mom. There’s always been a bit of a “just her and me” feel in the family - when I was diagnosed when I was 10 she stepped in in such a MASSIVE way. She did everything for me - dealt with all my food, kept me on a schedule (since the types of insulins back then really required a pretty strict schedule), gave me all my shots (I hated needles!), but still made sure I knew I could keep doing anything I would have wanted to do before. I went on huge hikes, weekend camping trips, never skipped an overnight birthday party (although sometimes at the start she had arrangements with the other parents that she would show up in the middle of the night to check my blood sugar). I can’t even begin to imagine all of the sacrifices she made for me.
I’ve been lucky to have some really great non-T1D friends who are my greatest supporters just by keeping me sane, too. People who will step in when I’m stressed or overwhelmed or sad and just help me get my mind off of this thing that can be so life-consuming sometimes.
I think sometimes we have a tendency to keep a lot to ourselves when dealing with T1D - we don’t want it to be other people’s problems - but it’s definitely awesome to learn to let others help us too I’m glad I’ve had such great supporters helping me through it!
I’ve only had Type 1 Diabetes for a year and a half, but even in that short time I’ve discovered that support is something I really need. There are times when I get so frustrated or sad, and its in those times that I’m most thankful for my mom. She is my greatest supporter. I tend to be extremely independent (at 15 years old) and do all of my insulin dosing, decisions, and cartridge/site changes alone. I am also not the best at listening all the time… Even though I can be difficult, She is always there when I realize I’ve made a mistake or need someone to comfort me. She supports me by encouraging me to be as independent and dedicated to excellence in caring for my self as I can be, and by always being willing to listen to anything and everything I am struggling with.
My dad has also been with me through it all. One of my other mentors is a man at my church whose daughter has had Type 1 for many years. Every time he sees me, he asks me how I am and also encourages me. He is a runner just like I am, so he also has tips about how to fit in running with my care. I appreciate that someone who I had never known very well before my diagnosis still cares and prays for me. And finally, my Grandma, who has struggled with cancer, also supports me. She knows what its like to live every day with responsibility, and she always reminds me that things like dealing with T1D build my faith and character.
I’m so thankful for the awesome people who love me!
I was 15 when I was diagnosed my diaversary is on the 22nd will be 11 years never had the support just me and never really told people about my T1dD until recently cuz they treated me so differently family and thought of friends always blamed me for this disease and I actually believed them I really never tried to connect with other diabetics until recently so the only support I have ever had and still have is my self a year after I was diagnosed I was on my own my parents had kicked me out and when I was diagnosed my glucose was 1545 mg/dl and spent 4 weeks in the hospital because the doctors had a hard time getting my glucose down in to normal range and I was in serve DKA and in a coma for 4 days and I was on my own didn’t know what was going on and didn’t understand any thing so I became a loner and angry with everyone and now still alone but less angry and less bitter but with out this disease wouldn’t be the person who I am today a person with more than I can ask for a decent job a nice home and a young adult that can budget money and budget priorities cant say much about the people at my same age without this disease who refuse or try to attempt to do and cant