Today is my ten year ‘dia-versary’ and I will celebrate LIVING with Type 1 Diabetes.
Recently, I have spent a lot of time reflecting on my health journey and how it has shaped who I am today. I have grown out of my aversion to needles and I have learned that there is so much more to balancing blood glucose levels than carbohydrates and insulin doses.
Ten years ago after my diagnosis I never thought I would say it but I am grateful to have diabetes in my life. It has undoubtedly made me a stronger person. Here is a list of a few things that this crazy journey with type 1 has taught me.
- I can’t do it alone. You would think, in fact I did, that diabetes teaches us independence. We have life threatening responsibilities daily and we have to learn to stand up for ourselves in situations. We sit on the kitchen floor alone drinking juice at 3am to treat a terrifying blood sugar in the 30’s. We have to tell other’s no, we did not get diabetes from eating too much candy when we were little. What diabetes has taught me though, is that I wouldn’t be doing as well as I am if I didn’t have someone to text at 3am from the kitchen floor or a friend to laugh with about the ridiculous misconceptions of diabetes. Diabetes is better with other people, just like life is better with other people. I’ve learned that independence is a given and that letting other people in has been the challenge. With the support of my family, friends, and others with type 1, diabetes doable is in the long term.
- I am not broken. There was a period in my teenage years where one of my favorite quotes was “broken crayons still color,” because well… I felt like a broken crayon. I felt like a human with a part missing who was constantly spending hours a day trying to make up for what my body couldn’t do anymore. That sucked. It took A LOT of self-reflection and a little bit of maturity to finally come to terms that with the fact that I am a whole, perfectly functional, deserving, and lovable human being. Diabetes has taught me that what makes you a whole person isn’t your functional beta cell count or anything physical for that matter, it’s about who you are.
- Persistence. There are no vacations with diabetes; in fact vacations with diabetes are pretty tough. New environment, new foods, different schedules, that’s more math and guessing numbers than a whole semester of calculus. Diabetes is always there, it’s there for every workout, every hang out with friends, every Christmas, diabetes even comes to prom. People often ask how I do what I do every day and the answer is easy really, if I don’t it goes downhill fast. I find it’s often easier to check my blood sugar than it is not to. Taking an insulin shot feels way better than not taking it and dealing with hours of high blood sugar. The hard part about the daily routine is the overwhelming thought of knowing I will be doing it every single day that I live for the rest of my life. The idea of not ever getting a vacation from it is exhausting. That’s the part of persistence that I’ve had to work at, the not getting discouraged and overwhelmed part. Some days are better than others but overall the persistence to move forward has been a huge asset in my health.
- Food is not my enemy. I used to be afraid of food. It makes sense; food can make me really sick really quickly if I’m not careful. People with type 1 diabetes have to count all the food they eat in order to calculate an insulin dose. The amount of attention we have to pay to food for survival is pretty similar to the habits of a person with an eating disorder. This is emotionally confusing and it’s hard to know where to draw the line of how much attention is beneficial to health and how much is harmful. From not eating, to binge eating, my relationship with food has been a rollercoaster. I have just recently found balance here with a meal plan that works for my blood sugar, isn’t overly restrictive, and gives me plenty of energy every day. It took a lot of work, research and experimentation to get to this point but I am so excited about it and I have never felt better about my body.
- It’s okay to cry. It’s no secret that diabetes makes me cry all the time. I used to feel guilty about it, like I was weak and not strong enough to handle what the world had given me. Now I realize that crying is a sign giving my emotions some recognition. I see importance in taking time to acknowledge when diabetes overwhelms me. No matter what causes the tears, reflection in that moment seems to be a positive thing in the long run. I’ve learned that crying is just a part of life and for me and it’s definitely a part of living with diabetes.
- Beating yourself up for an out of range blood sugar is more harmful than the blood sugar itself. This sounds funny but I’m so serious. Most of us do it, guilt is an unbelievably negative emotion to have on a daily bases. When things out of my control cause my blood glucose to spike I often find myself upset because I didn’t take more precaution.
For example, eating a homemade dish at someone else’s house. I do my best to count the carbs, calculate an insulin dose, and take the insulin at the right time. Then when things don’t work out with my blood sugar I get upset at myself because I wasn’t careful enough. I should have asked about all the ingredients, maybe I didn’t perfectly measure it out so my serving size might have been slightly inaccurate, or what if my insulin pump tubing has another hole in it and I didn’t check… the list goes on.
I have learned to talk down my guilt by reminding myself of all the things I did do right but even sometimes that doesn’t work. One thing I know about diabetes is that you can do everything right and get an unpredictable result over and over again. It’s chaos mathematics. I have learned to accept where medical technology is today and to trust myself to do the best I can with what I have.
- What other people think of me is not as important as what I think of myself. Diabetes comes with a huge stigma. Society often places blame on ‘diabetics’ because they believe that their condition was self-induced. I can’t tell you how many times people ask me what I did to give myself diabetes. I think this is pretty funny now, but there was a time in my life where it really hurt. Life with type 1 diabetes is not very sustainable if you are chronically worried about what other people think of you. I tried that, I tried hiding it for a little while after I was diagnosed. I snuck to the nurse’s station to do shots and blood sugar checks during school. Not being able to talk about what I did every day and how I felt about it with my friends was not fun but I was so afraid of people making fun of me. I am so glad I’ve moved on from those days. I have learned to stop letting it bother me that people think my arm CGM (continuous glucose monitor) site is a smoking cessation patch. I don’t care. I don’t care if people know that I have diabetes, even if they don’t even really know what it is. I don’t care anymore because I can’t care, at least I’ve learned that I can’t care and life a happy life. Over the years I have learned to just do me and if people get it then cool, if they want to learn more awesome, and if they judge me for it that’s just fine too. Those probably aren’t the type of people I want as major players in my life anyway.
- I have to let some things roll off my shoulders. For example:
- The amount of hours I’ve spent on the phone with my health insurance company.
- What my doctor says about whole grain intake.
- When my undergraduate professor teaches our class of 200 people that type 1 diabetes is something that you are born with (in case you didn’t know this is grossly inaccurate).
- When my blood sugar is 280mg/dl and I have to sit through a 4 hour integrated exam in medical school.
- When I drive to the gym, test, find out I’m low, eat something, then drive home.
- When the nurse at my endocrinologist’s office asks me if I’ve had any blood sugars over 120mg/dl and I say, ‘oh, I actually have type 1 diabetes,’ and she says ‘yeah, so any blood sugars out of the 70-120mg/dl range’ (this is ridiculous because the average hbA1c of adults with type 1 is 8% which represents an average blood glucose of about 180mg/dl – my point is that people don’t realize how hard diabetes is, even when they work in the field. This one I’m still trying to let roll off).
- Physical strength is easier to obtain than mental strength. What makes living with type 1 diabetes hard for me isn’t really the physical aspect. 10 finger picks a day plus 6 shots for years or now insulin pump inset changes every 3 days and CGM sensor sticks once a week or so. Over 10 years that seriously adds up… I thought about doing the math on the amount of needles I’ve put into my body but I honestly just don’t want to know. Needles just aren’t the hard part.
- Diabetes makes me passionate about things. About new health prevention research, about sharing my story with others, about how the USDA nutrition guidelines aren’t really based on accurate science, about becoming a doctor, and about making life with diabetes a little bit less difficult and a little bit more empowering for others.
Surviving with type 1 diabetes for 10 years, in my opinion, is something to celebrate. To think of all the high blood sugars that I treated before entering DKA and all the lows that I caught before unconsciousness, I feel proud to have made it this far. Zero hospital visits, no signs of retinopathy, and no other complications. Life is good.
I think it’s important for people to know that contrary to popular belief, it is absolutely possible to live a healthy and happy life with diabetes. I hope this provides insight in that, for most of us, life with diabetes is hard for the emotional turmoil it can bring…. but the fight is worth it.
Life is always worth it, no beta cells needed.