On an autumn morning only five days after our 11-year-old daughter had been diagnosed with type 1 diabetes, I walked out of the hospital holding her hand, clutching a bag of prescribed diabetes stash in the other, and with a whole lot of numb courage wrapped around my heart. Despite the rather thinly spread layer of bravery covering the fear and the trauma of what had just gone down, I stepped through those hospital doors back into my life with a strong sense of determination that our family had this. We were going to do this. And by “this” I meant LIFE and everything else. Our daughter was going to stop at nothing. Our family was going to stop at nothing. I was going to stop at nothing!
Diabetes was not going to stand in our way, not one bit. Not on my watch! Our daughter was going to grow up healthy and strong. She was going to live a full and beautiful life and do and be everything she had always wanted to do and be. And that was that. She might have diabetes, but diabetes did not have her!
During the weeks that followed I was even more determined to not allow diabetes to rule over her or boss our family around. I am a doer and planner by nature, so I grabbed the diabetes-bull by the horns and got down to business. I spent hours on end on the internet discovering, learning, and researching everything about T1D. I was horrified to discover what I perceived as a strong, steady current of negativity and victim mentality within the diabetes community.
I vowed to put as much distance between myself and this “diabetes sucks!” clan, the “woe is me” crowd, and the “I hate diabetes” tribe as possible. I was adamant not to follow them down their path of darkness and gloomy morbidity. Their messages were depressing and negative, and I was not having any of that.
I did, however, admire every person who boldly boasted and proclaimed uplifting messages of hope, encouragement, and reassurance. People who embraced strength and bravery despite their diabetes inspired me and fueled me on. I noticed how sometimes some of the “I can do anything” crew and the “diabetes does not hold me back” clan stood up against the negativity of the “diabetes sucks” people and reprimanded them for their gloom. From my corner I cheered them on. This strong and confident crowd were the people I felt comfortable associating with. They spoke my language. I felt understood. I felt safe. I felt like I belonged.
Fast-forward 18 months. Exhaustion. As a D-parent I was not getting nearly enough sleep. The round-the-clock diabetes routines, the stress, the fear, the worry, the frustration, the unpredictability, the ever-present ignorance which seemed to surround us, and seeing my daughter struggle… all of it simply became too much. I was worn out and mentally exhausted. I had hit a burnout wall. And with it came guilt and shame, because here I was struggling, not as a person who had this disease but as “just” the mother. I felt like I had no legal right to feel the way I did. To me it seemed like our daughter had diabetes and diabetes had her and us too — we were its prisoners. And it sucked.
It was somewhere during that time that I began to stumble down the path of darkness and became a bona fide member of the “woe is me” crowd. I was tired, fed up, and burned out. And unlike the irritatingly over-positive crowd and the ever-so-slightly-patronizing, happy, and strong group of people I seemed to have left, these “diabetes sucks” people were speaking my truth. This crowd gave words and a voice to the darkness I inhabited. They came and sat with me in my pile of rubble and let me just be and say what I wanted. They spoke my language. I felt understood. I felt safe. I felt like I belonged.
Now, a little over four years down the diabetes road, this is what I know: D-life is a little bit of both of these extremes and spans a vast territory in between.
To live truly transparent, brave, authentic, vulnerable, and courageous lives with a chronic illness like T1D, our family must be able to acknowledge the good, the bad, and the ugly that we deal with daily. We must give ourselves, each other, and others in this community a safe and supportive space to think and say and experience it all — both ways, the positive and the negative. Without judgment. Without condemnation. Without patronizing. It is okay to say that we are okay. It is even okay to say that we are more than just okay! It is also okay to say that we are not always okay with T1D.
To camp out exclusively in either of these two extremes is harmful and unrealistic. To sugarcoat or dismiss the uglies, to deny the difficult, would mean lying to ourselves. To try and cover up our vulnerability and struggle would be to live a life of pretense and fiction. At the same time, failing to acknowledge our strength, our growth, and the beauty of our authentic lives would be equally misleading.
As families and as individuals, we are still the same people we were before a diagnosis arrived on the scene. Nevertheless, we are altered, redefined, modified, transformed, and changed in many ways. And there is nothing broken about that. It simply is what it is.
We can do and achieve everything and anything we want. Yet, still, sometimes we can’t.
We are simultaneously brave and courageous and tired and overcome.
Sometimes when we’re at the top of our D-game we can easily offer encouragement, inspiration, and hope to our families and to others. Yet. Still. Sometimes we can’t do any of these things because we are tired and defeated, and hopelessness and burnout weigh us down.
To be okay — to be more than okay — to be strong, courageous, and authentic individuals who live our lives despite the impact of a chronic illness, we need to own and acknowledge the reality of the brutal paradox of our lives.
Diabetes makes us stronger and braver than we ever thought was possible. We may even say it helps to shape and sculpt our character. Yet. Still. Sometimes diabetes also makes us weaker. Sometimes diabetes hurts, and we may experience suffering or temporary defeat because of it.
Because this is the paradox of our reality:
We laugh and we cry.
We have hope and we feel hopeless.
We are strong and we are weak.
We are resilient and we are vulnerable.
We are courageous and we are afraid.
We are fragile and we are tough.
We are overwhelmed and we are triumphant.
We are powerless and we are empowered.
We are vanquished and we overcome.
This is our reality.
This is our journey.
This is the beauty and the pain of our lives.
This is the brutal paradox of life with type 1 diabetes.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.