I’ve been a type 1 diabetic for 16 years. Diabetes is not one of the issues listed in TWLOHA’s mission statement, but it’s still the reason I’m here.
On April 16, 1997, my mom took me to see my doctor and get some tests done. Afterward, she did what any mom would do for a five-year-old who had been fasting for eight hours: she took me to McDonalds and got me a cinnamon roll. From there, I went to pre-school. Later in the day, the doctor would call my mom and me back in to his office. I took my Beanie Baby, Happy the Hippo, with me for comfort.
The doctor informed my mom that I had type 1 diabetes and I had to go to the hospital right away. She asked if we could go home and get some things for our stay. He said no, we needed to go now.
So we went. I got more blood drawn, and they gave me a blue Snoopy band-aid. My nurses gave me an IV. They told me I was brave. My mom remembers them crying because of my strength. I just remember being confused. I had no clue what this all meant.
For those of you who might not know, type 1 diabetes is basically when your immune system makes your pancreas stop producing insulin. Insulin is the stuff that breaks down food and turns it into energy and regulates the levels of sugar stored in your body.
A nurse came in to teach my mom how to give me insulin shots, but she said she couldn’t give her five-year-old daughter shots. The nurse said my mom would be able to do it, because my life now depended on them. My days as a five-year-old would suddenly be filled with carbohydrate counting and blood sugar tests.
That was 16 years ago. Sixteen years, three endocrinologists, five insulin pumps, over 12,288 injections, over 35,040 blood sugar tests, and more doctor visits than I care to remember.
Since then I have had countless, almost daily, conversations that remind me I am broken. Every day, as I test my blood sugar and give myself insulin, I am reminded I’m not “normal.” For years, I was silently buying into the lie that my diabetes was stronger than me. The lie slowly dug itself deeper into my mind. I start telling myself I wasn’t good enough. I thought I needed to earn the love of the people I cared about. I didn’t talk about the way I was feeling, and at the time I didn’t really see the connection of my diabetes to my self-esteem.
In 2007, I heard about TWLOHA. They countered those thoughts bouncing around in my head. They told me that it was OK that I wasn’t OK. They let me know I wasn’t alone in my struggles. They declared that I was allowed to talk about my issues. More than that, they said that other people cared about my problems and wanted to walk with me through them, if I gave them the chance. They said that hope and help are real.
I began to passionately follow TWLOHA. I loved what they were offering me, and I wanted to share it with others. In 2010, I got to attend the MOVE Community Conference in Chicago. During one of the sessions, Aaron Moore mentioned how diseases like diabetes could affect our mental wellbeing. I had never thought of that before. No one had ever mentioned that. There had been talk of the affect on my kidneys, liver, heart, circulation, and eyes—but no one had ever mentioned my self-esteem or my outlook on life. Suddenly, my love for TWLOHA and their mission made sense. I had always said it was about the people I cared about, which was still true, but it was a personal passion, too.
Type 1 diabetes is a hell I would never wish on anyone. But it is a part of who I am. It is not, however, all that I am. I refuse to let it define me. I will not let it stand in the way of my dreams. I am more than my diabetes.
You are more than any disease, any addiction, any problem. You are more than any one word, any one idea. Your struggles can shape who you become, but don’t let them define you.
I would not be who I am today without my diabetes, and that is why I choose to celebrate. I choose to remember that I might not be able to get rid of this disease, but I don’t have to let it win. I can still fight. I can learn and grow. I am not alone, and there is hope for the future and for today.
So each April 16, I will rehash the story of my struggles. But I will also eat cake. And let my roommate sing to me. And wear stickers proclaiming my anniversary. I will celebrate.
—Rebecca, Summer 2013 Intern
Kirsten Nygren Formea
Thank you for sharing your story. You are an amazing woman whose strength is awe-inspiring.
I am so glad I saw this. I am also a type 1 diabetic, though I have only been for 2 1/2 years, but I have felt many of the same things. And I really needed this right now. So, thank you.
I was diagnosed with Type 1 diabetes in the fifth grade (I’m 22 now). Every year on January 9th, my mom bakes a cake a celebrates that I am alive. Some people might find this silly, but I have always enjoyed it. Last year was the first year I was not at home on January 9th. I was very thankful to be with an amazing friend and her boyfriend who after I told them about my “anniversary”, surprised me by going out and bringing back a cake for all of us. Thank you for your encouraging words and the reminder that people who have any sort of disease or illness are not defined by it. Even something dreadful, like they day my life changed because of Type 1 diabetes can become a day to be grateful and express thankfulness.
“I would not be who I am today without my diabetes, and that is why I choose to celebrate.”
I too would not be who I am today without the abuse that shaped me. I don’t celebrate it, but I do celebrate the person it has made of me. Go you!
Beautiful story and what a brave woman!
I just wrote a paper on Diabetes for my nutrition class!! You are not broken, you are a part of a large population of Americans, over 300 million, who have this disease. You are a strong woman!! Keep up the strength and faith and your ability to inspire others!
Rebecca, it is truly a miracle from God that you are a Type 1 diabetic. I actually was diagnosed with Type 1 diabetes August of 2012. I’m 18 years old, so I didn’t grow up with it like you did. I also took my diagnosis rather well. I think it is because diabetes is not necessarily painful, but it requires a lot of upkeeping. I also have hypothyroid, but that’s really not a big deal, but it does mean I have been surrounded by endocrinologists for as long as you have! I have also struggled with TMJ for a while as well, and I was going to have oral surgery which requires sedation. It was actually scheduled for tomorrow, but now I cannot have it because I didn’t get clearance from my doctor. My blood sugar has been really low lately and they don’t feel comfortable with me not being to eat for an extended amount of time. Also, I got my blood drawn and the results didn’t come back in time. This past night has been really difficult because I’m truly realizing the complications that come along with having diabetes.
All of this to say, I understand how weary you can get. There is a lot of uncertainty. I LOVE SUGAR. I love cake. I next to never turn down chocolate. It has been a struggle. But like you said, it is okay to not be okay. I get sad. I get anxious. But at the same time, diabetes has become a part of me. But it is also NOT who I am. So I know you are an intern for TWLOHA and you can wonder if you are alone, despite their slogan. I am here to tell you that you are NOT alone. I know that I have no diabetic friends, so it is refreshing to see a post from another Type 1. (by the way, I prefer to refer to my diabetes as “the beetus” because it sounds more pleasant and humorous like the guy on those Liberty Commercials)
That was really inspiring! Thank you!
So many people live with ongoing health conditions every day. You don’t really realize what it’s like until you go through your own diagnosis or hear from someone who has. I admire your strength to not let your illness define you.
This is beautiful, Thank you!
Brought tears to my eyes. I am grateful for your story. I am even more grateful that I get to be a part of it.
Thank you for sharing your story, Rebecca. You will give many others hope and a new perspective like you have found. You are such an inspiration. You are beautiful. You are perfect. God bless you.
Coincidence? I think not!! This post is so relative to my situation at the moment. I have just this week started to admit that I am a addict and acknowledged that I am losing the battle against addiction. I started NA tonight and your perspective on dealing with a disease amplifies the 12 step programs methodology. Like your diabetes, the disease that is drug addiction will be a permanent part of my life, but I REFUSE to let it BE my life. Although empathy and support from others, as well as building Faith, awareness, acceptance, patients and love for all that is me won’t provide a cure, they will give me the strength, courage and dedication to confront the causes of addiction.
Your positivity is beautiful and inspirational, so thank you and stay well.
Seeing this helped me so much, I’m a 15 year old girl and was diagnosed 5 days before my 12th birthday with diabetes, I remember my nan mum and dad being in the doctors room with me and I just started crying when my to said hospital. Ever since then life has been difficult. I’ve dealt with depression because of diabetes and a few other issues… I’ve always thought I was alone and no one knew how I felt, when I say I can’t do stuff coz of diabetes my sister tells me to get over myself and it’s made things worse. I struggle with self harm, depression, diabetes and anorexia… Thankyou for showing me I’m not alone! TWLOHA SAVED MY LIFE!!!
I got on TWLOHA because I’ve been feeling like crap the past few days. In the past some of the blogs would make me feel better. And this was the first one I saw. I was diagnosed a month after my 8th birthday. My other diabetic friends call me the miracle case, because of how sick I was when I was diagnosed. I’ve never really accepted my diabetes, I hated it for how it made me different. I wanted to be like everyone else, but I can’t and I hated that. Today reading this blog, I gained a new outlook, although I know it’ll be a process, I’m making the conscious effort to accept my disease, and not let it determine who I am. I, thank you for this blog.
Thank you. My sister was diagnosed last year at 20 years old with type 1 Diabetes. Her life is changed. She has been emotionally vulnerable and her boyfriend of 3 years broke up with her after she was diagnosed and she wouldnt eat or take her medicine. It is crazy to see how my loving sister is so happy at some moments and the next completely depressed. From reading this, it helps me understand what she is going through a little better. She is doing better. She just got the pump and a sensor and a new boyfriend. She will never stop fighting. We will diaBEATe this!! Thank you
Wow that was odd. I just wrote an extremely long comment but after I clicked submit my comment didn’t show up. Grrrr well I’m not writing all that over again. Anyway, just wanted to say superb blog! deedddedacbg