Diabetes Complications: How Informed Do I Want To Be?

Diabetes is a lonely disease. The reason I started writing my book, The Smart Woman’s Guide to Diabetes, was to feel less alone. When I began reaching out to different women, asking them to contribute stories about their lives to include in my book, I told them to write as if they were sitting in a coffee shop with their girlfriends sharing stories and commiserating about life. Because when I go to my favorite coffee shop with friends and talk about motherhood or books or work, I always feel better. I feel heard and understood, and that’s what I wanted to create for women with diabetes.

Brandy Barnes has a similar mission with her nonprofit organization Diabetes Sisters and the annual Weekend for Women conference. This year was my first time attending the conference, and the best part about the weekend was meeting other women with diabetes. Listening to the stories and hanging out with women like Melissa who lives in the middle of nowhere Montana with four kids under ten, and Sysy who has twins, and Meghan, an artist who runs marathons, was inspiring. Some women wore a pump, some did injections, some had lived with diabetes for decades, and others for just a few years. It was great and it was also strange to share diabetes with a roomful of women.

The first workshop I attended was called, “Advanced Duration Diabetes” and was lead by Connie Hanham-Cain, Claire Blum, and Cindi Goldman-Pattin. All of the women are certified diabetes educators and their workshop was meant to educate women about the “unknown challenges” of living with advanced duration diabetes. The moderators projected a list of complications onto a large screen that included gastric, thyroid, heart and foot issues. And as I sat there and listened, I felt like I was going to hyperventilate. I looked around the room to see if anyone else seemed uncomfortable, but the faces were unreadable. It reminded me of the days when I was first diagnosed and initiated into a language of illness with big, scary words like: amputations, blindness and kidney failure. A language I didn’t want to learn.

When I returned from the conference, I emailed Claire Blum and told her how I’d felt overwhelmed by the workshop. She listened and asked questions, and we had a good discussion. I told her that I choose to believe as long as I take good care of myself, I will live a long and healthy life, and that I don’t want to go through life preparing for the worst. Claire asked if I was choosing to be uninformed about possible complications, and her question stopped me in my tracks. Was I acting like an ostrich and sticking my head in the sand at the first sign of danger? I wasn’t sure.

The next morning I went out for my daily run and thought about my discomfort with the language of complications. Was I living in denial or was I hoping for the best?

By the time I returned home I realized that my attitude may seem like blissful ignorance to some, but to me, it’s about personal choice. It reminds me of parenting. With three children under ten, I could spend hours researching every bump, lisp and frustration that my boys experience. I could make an appointment with their doctor or read articles online when my middle child struggles to sit still at dinner or my oldest son worries about making the same grades as his friends, or the fact that my youngest still doesn’t talk. But I take a deep breath. Just as I choose to expect the best for my children, I choose not to focus on the ‘what ifs’ of diabetes. If one of the many complications from the workshop comes my way, I’ll make an appointment with my doctor. Sometimes it’s best (for people like me anyway) to forge ahead without a map.

I am glad that I attended the workshop, and even more glad that I went to the Diabetes Sisters conference because I saw that I was not alone. Sitting in the conference room I saw that we are tall, short, old, young, creative, smart, rich, poor, happy, sad, sick and healthy women with diabetes. Some of us have complications, some of us want to be prepared for complications, and some of us don’t want to know about complications. Just because we share this disease, doesn’t mean we share our approach to managing this disease and that is okay. Diabetes is not a one size fits all illness, and conferences like the Weekend for Women are like a salad bar where we can pick and choose what we want to ingest, and walk away full.

Amy Stockwell Mercer is a regular contributor to ASweetLife.  She writes the blog On Becoming Whole.

Comments (3)

  1. Jane Kokernak
    Jane Kokernak at

    I don’t think you are in denial (pathological kind) at all. You seem to be a pragmatic optimist to me.
    Did the team who presented “Duration Diabetes” place their material in the context of the DCCT? http://diabetes.niddk.nih.gov/dm/pubs/control/ This ground breaking study, as you probably know, showed a dramatic reduction in diabetes-related complications for patients who followed and intensive regimen and kept tight control.
    A few years ago, I participated in a family genetics study at the Joslin Diabetes Center in Boston. Early in the study, I learned from the nurse administrator that the study was finding, surprisingly, that some diabetics may have genetic protections that help them live well with the disease and avoid complications. She speculated that my brother and my family (we both have Type 1) may have this ‘protection’ in our DNA which is offsetting the potential harms of diabetes. Also, we both follow the intensive regimen and always have.
    You’re right, diabetes is not one size fits all. And not every person with diabetes is doing all that they can to remain healthy. Someone should do a study of those of us who exercise, eat well, avoid alcohol and smoking, go to the doctor, get eye exams, check our blood sugar, always take our insulin, and stay informed.
    I’m in your camp. I am planning on living a long healthy life with this illness. I well know people who have suffered and even died from diabetes complications — I am neither naive or in denial — but that does not have to be me.

  2. Steven Kurtz at

    Facing the consequences of not managing the scourge that is a diabetes diagnosis is brutal.  If you can effectively manage your blood glucose level and A1c without keeping future complications in your mind as a stick, I applaud you.  The carrot of all of the health benefits of leading a healthy lifestyle even with diabetes can be a great motivator.

    The unfortunate truth is that most people don’t get motivated this way.  They need to become fully aware of the dreadful suffering that can come from ignoring or mismanaging diabetes. 

    I am one of these people.  My daily struggle is kickstarted by remembering the suffering of my father. Limb loss, Kidney failure, strokes, and more.

    Loved the article.  Keep fighting the fight!

  3. amy at

    Thank you for your comments! I have to say that my endo (before he retired) was one of the doctors involved in the DCCT, and he always told me that as long as I maintained good “control” (for lack of a better word) I would decrease or greatly reduce any risk of complications. His advice did wonders for my motivation and my confidence :)

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