When I was younger, the importance of being steadfast and vigilant with the way I managed my diabetes escaped me. Diagnosed in my teens and distracted by the pitfalls of adolescence, as well as a bad case of the “diabetes denials”, I never built the proper foundation needed for success. I had unwillingly been thrust into a world filled with multiple daily injections and finger sticks to test my blood glucose. It was like someone decided to change the rules after I had already been playing the game. At fifteen years old, a freshman in high school, I was faced with my own immortality and I was in no way adequately equipped to handle such an emotionally scarring event and the transition into my new way of life.
What started out as a dip in the pool of denial soon led me down a darker, more dangerous road. In the beginning, my intelligence and maturity was utilized to deceive my parents and others who were concerned with my well-being. The lies were never malicious, only a clever device used to alleviate the burden upon the realization of the enormity that is living with a chronic illness like type 1 diabetes. Deep down, I felt the weight of my worries pile brick by brick upon my chest, and when I let it, the pressure began to suffocate me. I could never allow my loved ones to know how distraught, alone, and afraid I was. They had problems of their own and there seemed no reason to involve anyone who could never truly understand first hand. Mix that with my fear of not being able to “rise to the occasion” and make them proud and you’re left with a convoluted cocktail of disastrous proportions.
Ever the ostrich, and faced with more than I could realistically manage, I chose a route I too often take, which is that of burying my head in the sand. I thought that by diverting the feelings I had surrounding my diagnosis, management, and how it would play a role in my future, into a small, figurative box deep within my mind, I would find some peace. I could turn the key, lock it away, and be all the better for it. However, this was not the case (obviously). By not addressing those problems I was facing in the beginning as a newly diagnosed T1D, I allowed an opportunity for the creation and birth of one of my biggest demons to date.
I had heard of the idea of restricting insulin to lose weight while inpatient at Tufts-NEMC during my diagnosis. Isn’t it amazing how when precision of language is underutilized and proper education is not implemented, we can be given the exact tools to our own inevitable destruction from those who were entrusted with our care in the first place? I was told “do not become like one of those girls” and given more of the generic diabetes literature I had been staring at for days to look over. Not once was I offered support emotionally – professional, peer, or otherwise. To date, this is one of the greatest disappointments when I reflect upon my diagnosis experience. Presently, I recognize the vital role caring for our minds has in relation to our physical health triumphs.
For years I played the game of omission, only intermittently having spurts of inspiration to become “a better diabetic”. My pursuit of perfection and my “all or nothing” mentality held me back from making true progress. I wanted help, but I didn’t know where to start. The anxiety surrounding figuring it all out alone made me more frightened than the potential complications I seemed to be on the road to receiving. I didn’t even have a name for what I was doing. I only knew that it was wrong and that I felt really, really sick the majority of the time. Remembering that loneliness, even now as I write this post, brings a sadness that makes my heart feel extra heavy. Those were some dark times and I am thankful each day that they are behind me.
The pressure to be thin plagues even the most confident and seemingly happy of people. I would never had labeled myself as someone with obvious insecurities. I was a competitive athlete. I was well-spoken and well-read. I had plenty of friends and a boyfriend who never let me forget just how wonderful I was. Everything negative I felt about my physical appearance, I kept to myself. I knew I was not ugly, in fact, I understood that I was beautiful, and I think that’s what made it a little bit harder. There was always an expectation that I was to be a certain way. This expectation went beyond my physicality, but somehow my appearance was always the aspect that hurt me the most when I felt I was falling short. I could influence and implement change fairly simply on most other aspects of who I was, but the way I looked, and how much I weighed, were as plain as day, and right there for anyone to see and assess for themselves. I only wish that I could go back in time and shake some sense into that former version of me… or at the very least, hold her hand and tell her it will all be okay in the end.
I think the road to diabulimia is a little different for everyone. It took me a long time to even say that word out loud. The idea of having an “eating disorder” made me feel weird and uncomfortable at first. I now recognize how important it is for me to speak out and share my story of what I have been through. I do this without shame and with an overwhelming sense of pride.
I found the support I needed to vanquish diabulimia, and the evil it brought into my life, within the diabetes online community. It was a group on Facebook and a girl named Erin Akers (of the Diabulimia Helpline), who first took me by the hands and pulled me from my knees, lifting my soul and spirit into a world of understanding, fellowship, and inspiration. I continue to speak out on the value of peer-to-peer support, as the girls that I remember from my earliest days of recovery have remained beacons of friendship and love in the darkest of nights. They are women who, not only help encourage me to live my best life in harmony with my diabetes, but also provide me with valuable wisdom, guidance, and most importantly, a supportive shoulder to lean on when needed. These are the girls I go to when things, good or bad, happen. Whether it has something to do with our relationships, our jobs, our families (you name it!), we have an invested interest in each other. Knowing that each one of them is out there somewhere in this great, big world, living their life, brings me comfort even though we’re not geographically together. Without them I am not sure where I would be.
My involvement with the DiabetesSisters, and the connections I have made through my role as a PODS leader, have only furthered my progress towards living symbiotically with my disease. The incredible women I have encountered, and the joy I feel from being a key part of what brings us all together, provides me with the purpose I need to carry on. I know now that although I have what I need to succeed within me, it is important that I seek friends who will make the road to happiness and health a little more tolerable. The opportunity to play a leadership role within an organization dedicated to providing women with diabetes the education and support that they deserve makes me feel that I’m exactly where I need to be.
My life with diabulimia is an aspect of my diabetes journey that not everyone, including a lot of fellow T1Ds, will understand. Both diabetics and non-diabetics alike, have a hard time wrapping their heads around a person being blatantly destructive towards their own body in an effort to shed a few pounds. I wish I had a better answer to give these folks, but I don’t. Diabetes is not as easy as it may appear to some. More often than not, people stumble along the way. Every person on this earth is a product of their experiences. Refuse to focus on the failures and the mistakes and find a way to recognize and celebrate the efforts taken to conquer the adversity and hardships. There is no deadline to start living the life that you want and deserve. I know the things that I have gone through as a result of this eating disorder have impacted me positively and provided me with the raw materials for some of the strength and conditioning I’m continuously doing on my soul.
I never realized how far gone I was until I was pulled back from the edge of the precipice that is the dreadful disorder called diabulimia. It’s easy to make excuses while under the spell of insulin omission weight loss. However, no pounds lost can ever be greater than the joy that you feel when you live your very best life. I am happy to say that over the past few years, I have taken my chance at recovery, and I have run with it. It continues to serve as one of my many inspirations for doing the things that I do within the diabetes community. I only hope that by advocating and making others aware of this more-common-than-you’d-think issue, I can help others who hold a similar pain in their hearts that I once had myself.
If you, or someone you know, is struggling with disordered eating or diabulimia, please visit some of the sites listed below to find additional support and resources. You are never alone.