On July 24, 2003 I was diagnosed with Type One Diabetes as a 10 & 1/2 year old girl. I remember the day like it was yesterday. It’s so crazy to think that today marks 15 years of me living life with Type One Diabetes. Happy Diaversary to me! I’ve lived longer with this disease than without it. This is a big year for me – my 15 year Diaversary, I’m getting married in less than 40 days, and I’m starting my career path of becoming an elementary teacher. It’s crazy how life flies by, but I honestly wouldn’t change a thing. Of course if I had the option to not live life with T1D I would probably take that option, but I wouldn’t change the way its shaped me and what I’ve learned about myself.
I wanted to share with you all 15 things that I’ve learned about life and living life with diabetes. Even if you aren’t a diabetic I think many of these things hold true no matter who you are.
1 : YDMV – Your Diabetes May Vary
This to me has been one of the most valuable things I have learned so far. A diabuddy on Instagram came up with this saying and I’m absolutely obsessed with it. Not one person is the same, so it would make sense that not one person is the same in the way they manage their diabetes. What works for them might not work for me. What works for me might not work for them. That. Is. Okay. We live in a society where we’re constantly comparing ourselves to the person next to us or that person on Instagram that looks like they have it all together. They don’t. I don’t. None of us do. Please, stop comparing yourself. Just because I post something about how this low carb diet is doing wonders for my diabetes, doesn’t mean every diabetic has to eat low carb to properly manage their disease. This is just what works for me and I’m just trying to share what I’ve learned with everyone out there.
2 : It’s a game of constant changes and adjustments
To be honest, this is something that I’m still learning and still trying to work on. But, I have learned that it is a completely necessary step when managing diabetes. It is so easy to just live life and forget that you have to keep making changes and adjustments to your insulin dosing to truly get the best control of this disease. But I feel this is also true with life in general, if you aren’t taking steps back and looking at areas of your life that need adjustments or changes, you’re never going to reach your true potential.
3 : Some people are just ignorant.
I hate to be so blunt, but honestly this is the truth. I can’t even begin to tell you the amount of times I’ve had conversations with people about my diabetes and how I’m “too young, I don’t ‘look’ diabetic (WTF DOES THAT EVEN MEAN), or I should probably change my diet.” This is an autoimmune disease, meaning I did absolutely nothing to cause this. It doesn’t bother me when a person asks questions about diabetes, what my insulin pump is, or how you get diabetes, which does anyone even know the real answer to this one? Not really. What pisses me off and makes me angry is when people make assumptions about a disease that they clearly have no idea about it. If you know me then you know I’m all for spreading awareness about this disease and educating those that need it. But please, and this goes with anything you don’t truly have an understanding on, never just make assumptions. Unless you have this disease or love someone that has it and have taken the time to begin to understand it, you have no right to tell me what I can or cannot do – in fact even if you do understand the disease, don’t tell me how to manage it…..see YDMV lol.
4 : I became a responsible person very quickly & at a young age.
At ten years old I spent a few days in the middle of the summer sitting in a hospital bed learning about how my life was drastically changing. The first day I was giving myself insulin shots and testing my blood sugar. Within a few months I began using an insulin pump. Within a few years I was away at boarding school, even taking a trip to China as a freshman. By the time I was 22 I had traveled to multiple countries, many of them on my own or with friends, and had spent a semester abroad in Ireland. All while managing and living with T1D. I’m not trying to toot my own horn here, but at the same time I’m not trying to not toot my own horn….lol. Life in general can be hard. Life with diabetes is even harder. Being a child growing up and learning that you are in control of literally your future and facing life or death decisions on the daily is HARD. Did I struggle? You’re damn right. Do I still struggle? You bet. But this disease has made me responsible for myself. Made me aware of my body and how things affect me. I honestly don’t believe there is anyone who is more in tune with their body than (most) type one diabetics. You don’t have a choice in being responsible or not, you realize it’s just sort of what you have to do. That funny old saying of people being like “ugh I don’t know how you give yourself a shot everyday,” or “I could never prick my finger 10 times a day like that…” Well, yeah, you could if your life depended on it people.
5 : I was (and still am) faced with worrying about things that some kids and even adults could never imagine.
Fortunately, or unfortunately (however you want to look at it), for me I don’t remember life before T1D. I don’t remember what it’s like to be able to leave the house without my blood glucose meter, extra pump supplies, emergency low blood sugar snacks, or backup syringes and insulin. I don’t know what it’s like to go out to dinner and not be attempting to figure out how many carbs I’m going to be eating for dinner, how much insulin I need to take, and how long I need to wait before I can actually eat. Will my dinner come in time if I take my insulin now? As I child I often had anxiety about staying over night at new friends houses because if I woke up in the middle of the night with a low blood sugar, would they have snacks for me to eat? I always tried to bring some back up but you live life and sometimes you forget. As an adult I still fear going low, or high, in awkward or inconvenient times; while driving, while I’m teaching my future classroom, during intimate times, after just eating a meal with other people then going low and having to eat more – will they wonder what the HELL is wrong with me. There are millions of thoughts that go through my mind that someone without this disease could never even fathom. You can’t begin to imagine everything that we worry about so just support us and know that we have to fight some pretty big battles both physically and mentally.
6 : It’s okay to lean on others, especially other diabetics, for support.
I’ve always been very independent with this disease. As I said, the day I was diagnosed I was giving myself insulin shots at age ten. My friends and family have always been supportive of me, but sometimes it’s hard for even the ones that care about you most to understand. It took me nearly 15 years to find the online T1D community, but now I thank God every day that I have. Though the support and love from family and friends mean so much to me, there’s just nothing that compares to a peer that is literally going through some of the same struggles that you are. I’m beginning to learn that it’s okay for me to express why I’m feeling upset or angry to my fiancé because my numbers have been all over the place. I’m beginning to learn that it’s okay to take some time to just chill out because I’ve been running high all day long and I can’t seem to figure out why. I honestly think that finding this community has helped me become more open and aware of my feelings regarding T1D and I’m so thankful for all of you out there, diabetic or not.
7 : Not everyone, including friends and family, is going to understand the certain lifestyle choices you make.
When I began doing a low carb diet not everyone could understand why I was doing this. “Ugh how can you not eat bread and pasta and pastries and all those delicious things every now and then?” Well, to be honest, it’s hard AF…but I’m trying my best because in my mind, is having some of those foods really worth shortening my life? It’s the harsh reality I face because my body truly can’t handle them even when I take proper insulin and take it ahead of time. To be honest there are even many diabetics that don’t understand why I do what I do. Which is okay. Now of course, I still slip up from time to time and I won’t lie to you, I had my first bowl of cereal this morning in ages as a special Diaversary treat…Bolused (took my insulin) for 45 carbs about 20 minutes early…still spiked to 206…this is why I avoid as many carbs as possible. There are many diabetics out there who can eat this and other carbs and still stay steady, but for me it’s just not in the cards. I am thankful that I have finally figured this out, but honestly, with all due respect, I don’t care anymore whether you agree with my lifestyle or not. This is what works for me. Again, YDMV.
8 : My doctor/endo isn’t always the best or only reference for learning and trying new things.
Ever since joining the Type One community I have learned SO much. So much more than I ever learned from my doctors. This is not to say that your doctors aren’t helpful and you shouldn’t see them, but in my opinion taking advice and learning from the other diabetics out there has been so much more beneficial for me. They’re able to help me and give me tips of what’s worked for them and what I can try too. Of course you always want to check with your doc if you’re going to try something new, but don’t be afraid to speak up and ask them about different things you’ve heard or read about!
9 : There are about a million and one things that can affect my blood sugar other than just carbs.
Many non diabetics believe that if you just eat clean/healthy, take your insulin, and exercise regularly then well diabetes is a breeze right? Wrong. So wrong. Even if I am eating low carb, drinking water, exercising, and getting a good nights sleep, there’s a chance I might still spike to 220 for no reason. I always say Diabetes has a mind of it’s own, and it’s so true. Things that can affect my blood sugar: heat, hormones, my mood, anxiety, water intake, running, lifting weights, sitting down, waking up, crying, carbs, thinking about carbs, looking at carbs….LOL…but seriously, there are SO many factors to diabetes and that’s one thing that non diabetics don’t understand (which I can’t blame them for).
10 : Self care is extremely important with this disease.
Living with this disease can take a serious toll on your body and your mind. That is why I have found that it is so important for me to do things that make me happy no matter what. Whether that be working out, getting my nails done, having a few drinks with friends, going for a walk, doing yoga…whatever it may be, it’s really valuable for you to take some time out of your busy schedule and do something for you. This goes for most people in the world I believe, but especially so for us dealing with chronic, invisible illnesses like T1D.
11 : I am never going to get it right every time even if the circumstances are exactly the same.
I could wake up at the same time every day, have the same breakfast, take the same amount of insulin and have different results every day. This goes back to #9 in that there are so many things that can affect my blood sugars. It’s really important to understand that sometimes things are just out of your control. For example, when I am PMSing, my blood sugars run high no matter what I eat or what I do. I try to recognize this and not beat myself up too much, maybe increase my basal (like a steady insulin drip that my pump gives me throughout the day) a bit, and try to just breathe through it. No one gets it right all the time.
12 : It’s okay to be scared sometimes, I don’t always have to be so brave.
I’m not going to lie, there have been times where I was truly scared for my life. Times where my blood sugar was so low I could barely think straight and barely shovel enough food into my mouth to begin to feel like I wasn’t dying anymore. Times where I had high blood sugars all day, even after taking loads of insulin, worrying I might go into DKA and potentially not come out of it. A frequent fear of mine these days is that I won’t be able to have a healthy pregnancy someday or that I will pass on my diabetes to our future child. I know these are somewhat irrational fears as there are many T1D moms who have completely normal and healthy pregnancies, they just take a lot more work. And I know that it’s not always true that you pass on this disease to your child but it’s also not a guarantee they won’t get it. But if that day does ever come I know that God gave me this life because I’m strong enough to live it, and in that I will show my future child they are strong enough to live it as well. Similarly, if you read my blog post about why I was scared for the Fourth of July, it’s okay for me to have those feelings. There’s a lot on my shoulders dealing with this disease every day.
13 : Diabetes doesn’t define me, but rather has helped shape who I am today and who I will be.
Though T1D is a huge part of my life, it isn’t my entire life. I refuse, and always have, to let this disease control me or control what I do. This is why I’ve never let it stop me. I’ve never not done a trip I wanted to do because I was worried about being a diabetic. I’ve never not been myself because I was worried about what those around me might think of me. This community has also made me that much more confident wearing my CGM or my Omnipod on my arm for the whole world to see. Diabetes has made me strong, resilient, responsible, confident, empathetic, and courageous. Life with Type One Diabetes certainly isn’t a walk in the park, but it sure has made me appreciate being able to walk in that park.
14 : Diabetes is a FULL time job.
Plain and simple. This disease takes WORK. And a lot of it. There are no breaks, no vacations away from it, no hour away from it, no minute away from it. I’m constantly looking at my blood sugars, adjusting my insulin, counting carbs, worrying about how certain activities will affect my numbers, deciding if I should really eat that food or if it’s going to spike me too much, wondering what people think of these devices on my body – even though I have the confidence to wear them now I still wonder what people think of them and do get self conscious at times, I’m not a superwoman – making sure my pump has enough insulin to get me through the day, making sure I have back up pump sights just in case one rips out of my body, checking my blood sugar manually to make sure my CGM is accurate, drinking enough water so this summer heat doesn’t cause too many highs, making sure I’m not too low or too high to go to bed at night, worrying about if I do go low will I wake up in the middle of the night….the list goes on and on. I’m truthfully not being dramatic when I tell you these thoughts are constant, 24/7, 365 days a year thoughts that us type one diabetics always deal with. Full. Time. Job.
15 : I am not alone.
This has been a very important thing for me to realize and again this community has allowed me to do so. I grew up never knowing or having many type one friends in my life. I think at a young age I began internalizing any issues I may have felt or dealt with because I felt like no one truly understood. I was never necessarily very depressed or sad about having diabetes, but I also just didn’t deal with the way it made me feel. I kept it in and when someone asked me if something was wrong, I never wanted to complain about my diabetes. I never wanted anyone to feel sorry for me because that’s just not who I am. I am a strong woman. I’ve begun to realize though that it’s okay to have these feelings and it’s okay to reach out and to talk to people about them because I’m really not alone. This community has helped me realize that when I’m having a bad day diabetes wise, I can talk to my fiancé about it, let him know why I’m upset and why I might just need a little extra support that day. I can DM some of my diabetic friends on Instagram and complain to them about how I sky rocketed for no apparent reason and I’m frustrated (shout out to @paigespancreasprobz for being my literal twin and venting with me about our insulin resistant selves). No matter what, I’m not alone and I never will be with this disease. I’ve got my family, my friends, and my diabuddies all around to help push me through and conquer life with Type One Diabetes!
Also, special shout out to my amazing fiancé, Jonathan, without whom I wouldn’t feel as brave, empowered, loved, supported, or encouraged. You help make me the strong diabetic woman I am today and I thank you for that. Also thanks for being my impromptu photographer and not getting mad when we’re in the backyard stepping in dog crap to get a good pic of me holding balloons that are losing their helium. 🤣 I love you for life.