My Endo Threw Me Out
My journey with Type 1 is only two years and counting, but if there is one thing I have all figured out, it is that my support system has the biggest impact on my diabetes management. This includes my friends, family, boyfriend, roommates … and my doctor? My endocrinologist, the very person who should be helping me conquer this Type 1 monster, was my worst enemy. I could not help but feel completely betrayed and attacked every time I stepped into the office, so much so that I would do whatever I could to get out of appointments.
I hit my diabetic burnout pretty early, and this was something that my endo just could not seem to grasp. I was diagnosed April of my senior year of high school. Weeks before prom, senior trip and graduation. I was in a brand new relationship, just committed to my university, and all the sudden my whole world was ripped into pieces. I was beyond frustrated with the daily maintenance my diabetes required, frustrated before it even really began. I was sick of constantly having to excuse myself and give myself injections in bathroom stalls or lift up my shirt in public to stab my stomach. I was absolutely angered that with every shot I would gain more weight, scar up my skin and bruise my body. I simply did not want any part of it.
Months passed from my diagnosis and my A1C kept climbing, from an 11.7 at diagnosis, to over 13 just a few months later. Six months after my diagnosis, I was a freshman in college and accepted into the Disney College Program (one of my life-long dreams). But I knew that it would be an uphill battle with both my parents and my doctor to let newly-diagnosed Ashley go play in Orlando for six months. I knew that working full-time and being in a new environment would affect my control, so I begged to be switched over to insulin pump therapy. My doctor told me it was merely impossible. At first I was told I have “not shown enough responsibility to be on the pump,” then it was “my three months notice is not enough time.” He refused to even entertain the idea. As frustrated as I was with my doctor’s decision, I decided to go anyway without the pump. I was excited to be gone for six months (and not have to make a single appointment). No more arguments, no more lectures and no more waiting-room tears.
As you would expect, eager Ashley got carried away in it all. Living states away from home, having unlimited access to Walt Disney World, working a full-time job while also being a full-time student. How was I to have time to take care of myself? During my short 15 minute breaks after hours in the Florida heat, I was not going to take time to excuse myself into bathrooms and treat myself. I neglected my disease, day after day and with every passing shift. You know where this is going. I became unbelievable sick and miserable, being sent home on some days because my blood sugar was interfering with my ability to perform my role.
One day at EPCOT, while walking around on my day off, I saw a little girl with an Omnipod attached to her arm. I decided to make some off-the-clock magic and give away all the extra fastpasses I had to the family. One thing led to another and the mom of the family, Jess, was asking why I didn’t have an insulin pump myself.
I wish she knew how much that short conversation
would go on to impact my life.
I explained in length my battle. Jess was patient with me, and went on to tell me how she had similar problems with her daughter’s endocrinologist — until they switched over to the Joslin Center. There, they help correct A1Cs through an insulin pump, instead of requiring control first to switch to pump therapy. Although their family was from Boston, she told me that New Jersey had a Joslin Center.
Fast forward another few months and I moved back home to New Jersey. Due to personal reasons, I was not able to complete the full length of my college program, leaving two months early. After only a few days back, I became inevitably sick, which led to a very confrontational endo visit. At the age of 18 and having only been diagnosed a year, my doctor, who was finished arguing with me, decided the best solution was to discharge me from his practice.
I felt absolutely betrayed. Although I was never happy or comfortable with my doctor, I felt lost. I was still just a kid, particularly when it came to this unfamiliar and taxing disease, so the thought of being removed from a juvenile practice horrified me. I didn’t see it at first, but there was a silver lining.
I remembered what Jess has told me back during our EPCOT encounter … The Joslin Center. Long story short, it only took me weeks to see a new doctor and discuss the options of insulin pump therapy. In less than six weeks total, I was completely trained and set up with my pump, something my former endo convinced me was impossible, particularly in such a short amount of time.
I know what works for my lifestyle more than any doctor, family member or professional will. I know what encourages me to manage my diabetes. I have been on insulin pump therapy for a year now, and I feel more in control and comfortable than at any other point during these past two years. I want everyone to always know that your healthcare professionals should be your support team, always encouraging you and making you feel protected. It is okay to fight for you health and to know what is best for your body.
If I had not fought for my pump, I would have never found a new doctor, and would still be experiencing absolute physical turmoil from my diabetes burnout. Without an encouraging team behind you, the ones who should care most for your health, how are you expected to want to help yourself? Every single person with Type 1 is different, so it is okay to speak up if you feel your voice is not being heard. If you are not comfortable with your healthcare professional’s treatment, you have the power to find the best fit for yourself as an individual. I feel safe and cared for at my current practice, and know that I am understood and am not just a patient to them. I am thankful to have professionals who have a genuine interest and compassion towards my journey with Type 1. Above all else, I am thankful for Jess in EPCOT — my angel in disguise who has indirectly helped me conquer my diabetes day after day.
Read about How to Prevent Eye Complications with Type 1 Diabetes by the Joslin Center and Diabetes Burnout by Mark Heyman, MD.