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Real Talk With Dave: Feeling Bad For Having Diabetes – My Worst Experience

This is something that is very personal to me, and I really haven’t shared how I felt about it up until now.

Over Christmas break of 2016, my family and I decided to go on a vacation to Egypt. This was the first time I have traveled with my Diabetes out of the country in the 9 years I have lived with T1D, so I knew I would run into a few issues along the way, but I also knew that I would have my family with me for help and support if I needed it. Many things were planned ahead of time, such as what Diabetic supplies to bring, how much to bring, what to do to treat lows in a foreign country (that may not have the same carb contents as the US) etc. But most of these issues I was worrying about were for when I actually arrived to my destination. I had not realized that problems could still present themselves in the traveling process.

I have never been treated poorly for having a chronic illness, nor have I ever been somewhat judged for this disease that I live with 24/7 and that I did not ask for. I am not going to name where I was when this happened, as I don’t want to call out any country. That being said, I have a lot of respect for the country and people I interacted with as they were just doing their job and trying to stick to their security precautions. But, as we had a layover more than halfway to our actual destination, we stopped in a country where we were not sure how they would react to me having to bring in all my low supplies such as juice bottles, syringes, snacks, etc.

I had a separate suitcase that I carried everywhere I went that contained all my Diabetic supplies as we were going to be on this trip for about three weeks. I had a bag full of tiny glucose shots for quick low treatments, and two normal sized bottles of apple juice as I did not know when I was going to find more juice to carry me through the traveling process, and wanted to be safe and secure knowing I had something to keep me alive that could prevent me from passing out, or worse. As we were getting through security, I stopped to tell the officer how I needed these two juice bottles for medical reasons. Right away, he said no and wanted to throw them away. My dad then stepped in and tried to explain to him why I needed them and showed him a letter from my doctor, but he refused to listen. I then began to accept that fact and think to myself that I still had the glucose shots that were actually allowed, so I would be okay if he had to throw away my apple juice. But my parents didn’t want them to throw away something that could actually save my life, as they too were unsure when we would be able to get a hold of something sustainable and in bulk to carry me out of a low.

They then called the head of the security team. She was a very tough person who was not willing to listen or be understanding. As mentioned above, I had a separate bag with all my supplies, as well as a few other bags, and having all these bags somewhat bothered this woman. She rolled her eyes every time she had to check one of my bags. I was shocked at her reaction as she shuffled through my supplies and told me that I didn’t need those two bottles of apple juice as I had other things in my bag to treat lows. First of all, nobody has the right to tell a person with a chronic disease what they “need.” Second, we had a letter from the doctor explaining everything, she just refused to look at it.

As I had things thrown away right in front of me, I was so disappointed in how some people truly are, regardless of what they see someone going through. My parents, being the kind and loving parents they are, went back after we supposedly got done with that awful security check and complained to the woman, telling her how what she did to me was very rude and how I have lived with this disease for 9 years and that I didn’t ask for Diabetes. The woman, remaining tough, had no choice now but to listen. She eventually began to agree that she may have been a bit rough on me, but she was still wanting to win the argument.

As I walked away from the argument between my parents and the security guard over my Diabetes and all the complications that came from it, I have never felt more sad and angry for having Diabetes than that very moment.

I have never felt more sad and angry for having Diabetes than that very moment.

Trying to be the tough, brave, strong person I am, I had to keep a straight face, but if I was alone, I would have cried my eyes out. I remember thinking all these thoughts like, “why me?”, “why Diabetes?”, etc. It was the worst feeling a person can have for feeling judged and emotionally abused for having a disease that can’t go away. I felt crushed. The rest of the day, I couldn’t think of anything else. I was in shock seeing how mean people can be and I just wished I never had T1D. I am ultimately grateful though, for my amazing parents who stood up for me, as difficult as it must have been. I am grateful that they love and care for me so much that they would fight for my rights as a Diabetic.

While this may sound sad and depressing, going through an experience like that taught me something. It taught me to prepare for the worst. It also taught me to be kind. I would never in a million years expect to be treated so poorly and I never wish anything bad on anybody. I believe in kindness overall and that we may not be aware of what someone is truly going through. That is why we must always treat others with love and respect. I now believe that certain people come in our lives for certain reasons, to teach us things, to put us in situations in which we can learn from, and ultimately at times to show us love, respect, and kindness.

Diabetic or not, we are all capable of something great and we should never judge or be mean to people.

Though I still sometimes stop and think of this incident, and it still bothers me from time to time, I have forgiven the security guards and learned to be better and braver than ever before.

Despite what these diseases put us through, that shouldn’t stop us from living the best life and being our best selves.

Live well.

-Dave

Instagram Has Been A Lifesaver Since My T1D Diagnosis

I was 28 when I was diagnosed with Type 1 Diabetes. Like most people, I grew up not really understanding the difference. I thought there was one you got as a child, and one you got as an adult. There is no history of diabetes or autoimmune disease in my family, so honestly, I never really gave either much thought.

Then, I happened to have my yearly physical. Since everything else looked good, and I was always healthy, I lagged on getting my blood work completed. A couple of weeks later I got a really, really heavy period (sorry fellas) and went to urgent care. Long story short, they found multiple fibroid tumors (the largest was the size of a bocce ball) and told me to get that blood work taken care of right away. I got it done that day, which was when the rest of the whirlwind started.

Still thinking I was healthy with nothing to worry about, my husband and I left on a week long climbing/kayaking trip. A few days into the trip, I received a call that my fasting glucose was 300. They assured me it was probably a fluke but said that I needed to come in and have my a1c tested when I got home. During our trip I started to notice some other things- that my close had been fitting looser, and I was drinking a lot of water. We are really active so I thought maybe I just needed to adjust my calorie intake, and it was 4th of July weekend in Arizona so the water intake didn’t seem too odd. I should also mention that for probably 90% of this trip we were without cell coverage- something that still gives me the chills to look back on.

When I got home I had my a1c tested. By this point I had lost 25 pounds. Diabetes was still not even on my radar, in fact my team scheduled CT scans to get a closer look at the fibroids- suspecting cancer. Then my a1c came back at 12.3. I was misdiagnosed as Type 2 for about 6 hours (thankfully not by my doctor). My doctor knows how healthy and active I am, and she ordered a rush test for the antibodies that Friday afternoon. She told if my sugars didn’t go down I needed to go to the ER. That night I tested at 634 and to the ER we went.

I was in DKA, and dangerously close to a diabetic coma. I was immediately given insulin, and Monday was setup with my endocrinologist. A few days later the test confirmed Type 1.

The scariest part for me was how little the medical world seemed to understand about my condition.

When I was diagnosed I immediately researched the difference, and realized a lot of the information I was given in the ER only applied to type 2.

I was thankful that my general doctor knew as much as she did, but fast discovered that was not the norm. This diagnosis is scary enough, but it is worse to feel like you are not always in capable hands. As a newbie, I decided pretty much right away that I needed support of other people who actually knew what they were doing. Instagram and the community I have met through there have been such a life saver for me. I am thankful to have such a great endocrinologist, but there are some things you don’t understand unless you live with it everyday.

I owe so much to this community.

From the helpful tips to the endless support and words of encouragement, this community helps make this doable. It seems so much less daunting when you such an awesome support network. This July will be my first Diaversary, and I am so glad I decided to join this 24 hour support group we call Instagram. 🙂

Why I Helped Save Camp Ho Mita Koda

Until Monday, October 25, 1999, I was a “normal” second grader. One afternoon, my mom picked me up from the bus stop and told me I was not going to ballet class. She brought me to an appointment at my pediatrician’s office where I was diagnosed with type 1 diabetes by our family nurse practitioner. I was immediately admitted to Yale New Haven Children’s Hospital where I was poked, prodded and drowning in tears. After that first night, I decided I was a trooper. I decided I was over diabetes being physically painful and I accepted the needles. However, when I returned to elementary school the following week, I didn’t feel “normal”.

Everyone knew why I was in the hospital for a week. I didn’t like being in the spotlight. I especially didn’t like having to raise my hand when I felt low or high to go to the nurse’s office. I was tired of adults asking me if I felt okay.
<blockquote>I wanted everyone to forget I had diabetes. I wanted everything to go back to the way it was before.</blockquote>
However, a few months later, I started using an insulin pump which was a constant reminder that I was not normal. The overwhelmingly large, rectangular device that bulged out of my pocket made me even more self-conscious. One time on the playground at recess, a classmate asked me about my pump… and I ran the other direction. I was not comfortable in my own skin, and I wanted to hide my diabetes.

Then, the third year I lived with diabetes, I told my mom I wanted to go to sleep away camp like all of my friends. She said that our family nurse practitioner told her about an extraordinary camp where I would meet other children with type 1 diabetes. My nurse even worked there for a few summers! I was so excited to go to the camp.

Upon arriving at camp, I was my usual shy self. After meeting my new childhood best friend the first night, everything changed.
<blockquote>Camp was the first place where I felt “normal” since my diabetes diagnosis.</blockquote>
I was able to talk to other girls my age who experienced the same fears, struggles, and emotions. I was not singled out for feeling low, checking my blood sugar or having to count carbohydrates before lunch. I didn’t even feel the need to hide my insulin pump! I made some of my best childhood friends at diabetes camp.

My camp friends helped me through my difficult teenage years. They made me proud, and the real me revealed. The real me is fearless, bold and full of enthusiasm when opening up about living with diabetes. In high school, I was confident about my diabetes and shared my experiences with my friends. I felt supported! I even worked as a counselor at a diabetes day camp where I became aware of my own strength in being a positive diabetes role model. By the end of high-school, I decided I wanted to study nursing and become a diabetes researcher or educator.

<img class=”aligncenter wp-image-11549 size-full” src=”http://lyfebulb.com/wp-content/uploads/2017/05/11800421_2474603019611_1481508784763211646_n.jpg” alt=”” width=”960″ height=”960″ />

In August 2010, I left for nursing school at Case Western Reserve University (CWRU) in Cleveland, OH– 500 miles away from my dear friends and family. My plan was never to be in the Midwest or to end up so far away from everything and everyone I knew. CWRU was certainly the best choice for my aspirations. However, it was difficult, at first, learning how to manage my diabetes on my own. I was so far from home and had little support. I was still open to all of my college friends and my nursing class about growing up with type 1 diabetes. However, I spent four years opening up about my experiences but lacking a diabetes support system.

I graduated with my BSN in 2014 and continued my education by pursuing a Ph.D. in nursing science, also at CWRU. I was confident in the decision to dedicate my life to diabetes nursing and research. To gain RN experience while studying, I took an RN job at Camp Ho Mita Koda in summer 2015. That summer, I listened to and observed the psychosocial issues that campers of all ages faced. That summer was when I was certain that the Ph.D. in nursing with a focus on type 1 diabetes self-management in emerging adults was where my knowledge and work was unquestionably needed. Summer 2015 was also the summer that I met Paul McGuigen, a BSN, RN, CDE, and research nurse at a local pediatric hospital, Rainbow Babies and Children’s Hospital. Paul had been coming to camp since he was diagnosed with diabetes. In fact, living with diabetes also inspired Paul’s career choice. [[We can’t wait to share more about Paul’s story with you on another blog post!]]

Like Paul, I have also been touched by Camp Ho Mita Koda to pursue my career path. I meet so many children at Camp Ho Mita Koda who remind me of how my journey began. I watch these children grow into confident, “normal” feeling young adults with type 1 diabetes, who advocate for and take care of themselves. After years of missing a significant piece of my life, I find myself at home with the diabetes community in Northeast Ohio. Camp Ho Mita Koda has given me the support system that I was missing for so many years.
<blockquote>Diabetes camp has guided my career path and my life journey. Today, I am a diabetes advocate and believer in diabetes camps.</blockquote>
So, thank you so much for the lives you touch, Camp Ho Mita Koda, you truly make a difference.

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To support Camp Ho Mita Koda and the new nonprofit managing it, Camp Ho Mita Koda Foundation, please visit: <a href=”http://www.chmkfoundation.org/”>http://www.chmkfoundation.org/</a>

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To contribute to Camp Ho Mita Koda Foundation’s first fundraiser, please visit: <a href=”https://rafflecreator.com/pages/15457/camp-ho-mita-koda-cash-calendar-raffle”>https://rafflecreator.com/pages/15457/camp-ho-mita-koda-cash-calendar-raffle#</a>

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For questions, please contact Camp Ho Mita Koda foundation at <a href=”mailto:info@chmkfoundation.org”>info@chmkfoundation.org</a>

“Good Morning Carolina, Did You Know You Were a Diabetic?”

“Good morning Carolina. I need you to come back for a shot of insulin and IV fluids immediately. Did you know you were diabetic?”

That was the unwanted wake-up call I received the morning of Friday, February 26, 2016. I had been feeling terrible for weeks and just spent the night drinking water and using the bathroom almost every hour. I was confused, nauseous and beyond exhausted. Little did I know I had been experiencing all of the horrible symptoms that could lead to diabetic ketoacidosis (DKA). I lost about 25lbs, my eyes were sunken, I refused to eat, was extremely irritable and I was fighting a horrible infection from an unhealed wound. Napping a few times a day had become my new normal.  The only knowledge I had about diabetes, however, was what I learned about ten years ago in my 8th grade biology class.

Insulin, blood sugar, syringes, etc. were all foreign terms that were about to become a part of me.

“How could this be happening to me?” I thought. Just two months ago I was in the best physical shape I had ever been. I was a CrossFitter 5-6 times a week and I generally ate very healthy –even counted calories and sometimes carbs (ironic, I know). I was also an MBA student, a graduate assistant, a babysitter, and a CPA candidate. Stress had become a part of everyday life, and although I refused to let it take control over me, that wasn’t my choice to make and my body wasn’t taking it anymore. It was slowly but surely flipping a switch on me.

On February 27, 2016 I was admitted into the ER with a blood sugar of 373 mg/dL, shortness of breath, and the chills—I was FREEZING. Within the first few hours of my first hospital stay, I had X-rays taken of both my chest and my shin, IV lines placed in both arms, a bacterial culture was taken of the unhealed wound on my shin, and best of all I was told I was going into DKA –a brand new term which I refused to learn more about at the moment because I didn’t want to freak out and make the situation worse.

I heard the doctors and nurses throwing around terms I had never even heard of and it felt like I was on an episode of Grey’s Anatomy, except I felt like total crap and I wasn’t getting paid to act.  

After spending about 36 hours as an ICU patient and three days in a regular hospital room I was finally released into the real world where I now had control my own blood sugar by giving myself shots of insulin. In the beginning I was in shock. I couldn’t believe that after 22 glorious “normal” years, my life now depended on tiny amounts of this weird smelling clear liquid, which I had to inject with a needle.

The first few weeks I refused to research the topic because I was scared that WebMD would tell me I was dying, and to add to that I had a visiting nurse who further instilled fear by telling me I should no longer get my nails done at the nail salon or that I could no longer wear my favorite pair of heals anymore because I had to take care of my feet. I was emotionally drained and just wanted to go back and live at the hospital so my diabetes could be taken care of for me.

Thankfully those days didn’t last too long. As I began to get the hang of having to give insulin to control my blood sugars, I began to research the topic more and follow other diabetics on social media. I was able to get on an insulin pump and continuous glucose monitor after only a month and lowered my A1C to a healthy level a few months later. Diabetes was extremely scary and discouraging in the beginning but over the past year this full time job has taught me a lifetime of knowledge.

I’ve learned that my perfectionist ways of the past won’t work with diabetes.

It’s a disease that is affected by so many factors which makes it nearly impossible to manage perfectly. You kind of just have to go with the flow, roll with the punches, and keep living as if it hasn’t made a dent in your life.

I was lucky to have found the JDRF Young Leadership Committee, a group of diabetics that are in my age group in New York City. Some of these people have become my “diabesties” and have truly helped me feel like I’m not in this alone. I’ve also started my own Instagram page with the hopes of inspiring and supporting others in the t1d community. In addition, I recently rejoined CrossFit with the goal of becoming even stronger than I was before I was diabetic.

Having diabetes has become my new normal and although I wish I didn’t have it, it’s taught me to take each day as it comes and to look for the silver lining in absolutely everything. I only got one life to live and I will NEVER let diabetes bring me down.  


Follow Carolina on Instagram: @beatinbetes

How Diabetes Changed My Life

At the age of 16, I was diagnosed with type 1 diabetes. It was the worst day of my life.

I was devastated. At the time I was a competitive tennis player in Sweden and had represented my country on several occasions in the European and World championships. I was in the best physical shape of my life, and did not like losing. That made this diagnosis worse, since I could not accept or even understand how I could be punished like this. My lack of acceptance made everything more difficult. My two younger sisters, Anna and Lisa, who were 6 and 14 at the time, were supportive but in shock. I was their big sister who had always been strong, and now I was in the hospital. I would have to inject insulin multiple times daily, change my diet, and face the risks of short and long term complications from a disease we did not know much about.

Upon diagnosis, I made the decision to dedicate my future to discovering a cure for diabetes.

I would go to medical school as soon as I graduated from high school. I got accepted to the Karolinska Institute in Stockholm, Sweden where I graduated with both MD and PhD degrees after only six years. My research was, of course, in diabetes, but I kept a promise to myself not to let diabetes affect my behavior or require others to adjust to my needs. To do so I kept my diagnosis a secret from everyone except my family and doctors. Even my best friends in high school and my med school classmates had no idea that I suffered from the condition. When I stood before more than 100 people in the grand auditorium at the Karolinska Institute to defend my thesis, the only person outside of my family who knew that I was diabetic was my advisor, Professor Kerstin Brismar. This was because she also happened to be my medical doctor.

After almost 20 years with diabetes, in the spring of 2007, I found myself working long hours for a Scandinavian venture capital fund. I had severe anemia, uncontrolled hypertension and with diabetic macular edema in both eyes. I was not yet 35 years of age, but my body was telling me that if I did not change my behavior, I would not make it to 40. I was forced to “come out” as a diabetic to my partners at the Fund, to my friends and to the industry I was working in. I needed health care and I needed a complete reset of my body. I spent the summer not working, something which had not happened since high school (even as a child I would be busy with tennis tournaments during the summer) and started thinking about my future.   The decision to go to medical research and “find a cure for diabetes” which I had made as a 16 year-old newly diagnosed type 1 diabetic, had been modified over the years. I stopped everything to look back at my years in finance and other environments that did not allow me to focus on the long term because each day was consumed by its own report card. A situation like that is not healthy for anyone, but for someone with a chronic disease, and especially someone ashamed of that disease who does not let anyone help, it is disastrous.

I made the firm decision to work in diabetes and to make an impact for others while allowing my body to take center stage and try to fix what was damaged.

At Johnson & Johnson I was given an opportunity to lead what was called the Metabolic Taskforce where I was exposed to all existing products in the category as well as any new products being considered by the pharma, device and consumer divisions.

Unfortunately, the damage to my body had gone too far and I faced the need for dialysis or a kidney transplant. My eyes were healed but I had lost my entire peripheral vision and my night vision, but at least I was not blind. The kidneys were more difficult to fix, but my family came through and I received a kidney transplant from my father in March of 2009. 

He saved my life and gave me the motivation to be healthier and to make an impact.

Nine months later I received a whole organ pancreas transplant and my life took an incredible new turn – no more diabetes. I did not realize how bad I had felt for so long – it had been twenty years of insulin injections, highs and lows and constant monitoring. Even worse was the fatigue and the sense of vulnerability I had when on insulin. Now I feel free and ready to enjoy life and plan for the future, which poses new interesting dilemmas for a person like myself, who has lived day by day! Of course there are risks and issues with my new situation. To avoid rejection of my kidney and pancreas, I must take immune suppressants for the rest of my life. Those drugs increase my risk of developing certain kinds of cancer and limit my ability to fight infections. However, I am strong, happy and, importantly, I am surrounded by people I respect, and I am doing what I love on a daily basis!

In this blog, I will be relating parts of my story in more detail as well as how I see the future and what we are doing to try to impact it for everyone. I am not alone in my story – there are so many like me who are struggling with chronic disease. When I founded Lyfebulb together with Riccardo Braglia, Helsinn Group Vice Chairman and CEO and Steve Squinto, PhD, co-founder of Alexion and Venture Partner at Orbimed in 2014, it was with the broad goal to address the gaps I had experienced during my personal journey with diabetes and as a business woman and medical scientist.

My goal for Lyfebulb is to create a global organization that is patient-centric and functions as the voice for a larger population of patients, who have until this point been vulnerable and receptive rather than strong and proactive. We feel that it is patients’ responsibility and opportunity to be innovators, teachers and influencers.

Above all, I want to showcase individuals, who like myself, are not accepting of the role of a passive patient, but willing to take on the challenge of changing the future for themselves and others living with chronic disease.

25 Years of Type 1 Diabetes

On Friday 13th, 1992 at the age of 13 I was diagnosed with Type 1 Diabetes.

It was also a historic flood in my town and looking back on the pictures from it, I could clearly see how sick I was. I had all the classics symptoms: thirst, urination, significant weight loss, fatigue and looked gaunt like a ghost. My blood sugar was around 1000, which at that point I had no idea what a dangerous situation I was facing.

Little did I know how much my life would truly change that day due to my diagnosis. Many people would think it would be devastating and this would be a negative thing, but this diagnosis made me who I am today. Don’t get me wrong there have been some high’s and low’s, literally and figuratively, but I always had the thought process that there are two paths you go with this disease. You either let it control you or you control it! I chose to control it and let this be a diagnosis that I would do my absolute best to not let define me.

I just hit my 25 year anniversary living with diabetes and that is something I am extremely proud of. I even got my Eli Lilly 25 year medal! I decided to go into the nursing field after finding out at a young age all the mis-information that was out there, even among medical professionals surrounding diabetes. Then, of course, my next step was to become a Certified Diabetes Educator. After college I became the Nursing Coordinator at Joslin Diabetes camps and then transitioned to a Pediatric Diabetes Nurse educator there as well. I always loved working with children and their families since I felt I truly could relate to what they were all going through. I really think having them see someone that had been living with this disease for so long and was healthy without complications was a really motivating and positive thing for many of them.

After starting a family or my own (6 year old son and 8 year old daughter), I continued as a diabetes educator, but now work with adults and pregnancy patients along with being a lifestyle health and fitness coach.

I was fortunate enough to be a part of the Bionic Pancreas trial in 2015-2016, which gave me such hope for the future for myself and my patients and friends living with this disease. I was told when I was diagnosed that there would be a cure in 10 years and obviously that didn’t happen, so having a device that could make life a little easier and more manageable with diabetes would be outstanding! Living without the constant fear of hyperglycemia, having to count every single carbohydrate you eat, being able to exercise without fear of hypoglycemia would be a true dream come true. Dare I say it….make me feel a little more “normal”.

Becoming a Chronic Patient

26 June, 2009

I had woken up with Michael Jacksons’ “Ben” streaming out the radio. The news of his death had reached South Africa. I wrote my last mid-year examination of Grade 10 and celebrated by watching the newly released “The Hangover”. While we discussed the obsceneness of the film, I received a not-so-average phone call from my mom who had taken my little brother to see a doctor.

“Tracy, your brother has been diagnosed with type one diabetes”

Sure, my brother David had looked exceptionally unwell, stick thin and couch ridden, a far cry from his athletic build and energetic character. But what on earth is type one diabetes (T1D)?

“So what does that mean? Does he need antibiotics?” I replied.

Little did I know the whirlwind that was about to hit my brother and my family. We all grappled with the concept of T1D. What do you feed a type one? Is sugar bad? Insulin injections? What is insulin? Daily monitoring of blood sugars? We were a family unit exceptionally confused and desperate to help David through this diagnosis, but not fully understanding how.

David had gone from carefree 14-year-old to being his own doctor and primary caregiver- administering his medication every day.  He singularly experienced crippling low blood sugars when injecting excess insulin and the exhaustion of high sugars when he did not take enough. He was alone with these feelings as we could only try to understand and help where we could.

The integration of diabetes into an individual’s life and further more into a family’s life is challenging with mental, emotional and physical hurdles. Education regarding T1D came through websites, the endocrinologist, courses, and books, but more potently- through the experience living with a T1. We learned together through trial and error. We now knew and understood the symptoms, lifestyle of consequences of this chronic illness. (That most definitely does not require antibiotics, thank you Tracy of ‘09.)

At least, we all thought we had the subject waxed.

20 October, 2013

tracy1

I stared at my skeletal body in the mirror, my 20-year-old, incapable and broken body. My body and mind were permanently exhausted and constantly failing me. My bloodshot eyes searched and traced my bones. My head was surging and nausea scratched at my dry throat. Surely not, I thought.

With a knotted stomach and shattered threshold, I asked David to test my blood sugar. The countdown of the tester was excruciating, how could 8 seconds feel like an eternity? The monitor greeted me with a beep and a cheeky “HI”. Simple as that, I was diagnosed with type one diabetes. The tears flooded my eyes and streamed across my face.

My heart felt an incredible amount all at once.

It broke and ached.

It felt immense relief finally knowing why I was sick.

It broke again, for now I needed to break my parents’ hearts.

It sang that my brother and I were now a team.

I went from standing on the outside of T1D, curiously and helplessly peering in at my brother, to stepping in, right by his side with my own T1D diagnosis. I watched David tackle it for four years, expressing my sympathy and support. Now I was fully thrust into a position of empathy – I now knew what he felt.

With 10 years of exposure to T1D from David’s diagnosis to my own, I have felt the obvious lack of knowledge surrounding T1D in society. We don’t know the symptoms and we cannot seem to recognize the lethal combination of exhaustion, excessive thirst and bathroom breaks, unintended weight loss, blurry vision, irritability, and nausea. I was a second-year medical student, with a T1D brother yet it still took me months, to acknowledge my symptoms, to recognize my disease and act accordingly.

The thought that I possibly had T1D did flash across my mind in my last weeks leading up to my diagnosis but I kept dismissing my symptoms:

I am exhausted from being so busy.

I am thirsty and losing weight because I am doing Bikram Yoga.

I am crying, angry and frustrated each day because it has been a tough year.

I am simply burnt out.

The symptoms are problematic as they can be explained by most stressors in modern daily activities, which effectively delay an important diagnosis. Further impairing prompt and vital healthcare falls upon the shoulders of health-care professionals. The T1D diagnosis is often missed. It is a tragic oversight as it can be suspected by simply taking a patient’s history and performing affordable bedside tests. A urine dipstick or a finger prick glucose test can often scream T1D. The delay and failure of diagnosing T1D carries a heavy price, such as the heart-breaking stories of little Kycie Jai Terry (5), Claire Taylor (17) and Nicola Rigby (26), all losing their lives to undiagnosed T1D.

Living with this chronic illness has made me acutely aware of spreading my knowledge and insight into T1D. This inspired me to start my own Instagram account, type1tracy. Diabetes has enriched my approach in my medical studies, as I have become the chronic patient. It has made me mindful, grateful and present. Accepting my diagnosis, I have achieved more than imaginable and am blessed with appropriate medical health care. It has made me strive to be the best doctor I can be.

If you have T1D, you are empowered with knowledge. You never know whose life you may change by injecting your insulin in public, sharing your diagnosis, your symptoms, and your experiences. Above all, you can change lives and your own, by fully embracing type one diabetes – all while being unapologetically you.

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