My husband and I arrive at a trendy restaurant to join a lovely birthday celebration for a mutual friend. There are about 10 people listed on the reservation and we are asked to wait for the others in the bar. My husband orders two glasses of wine and a snack mix is offered to us. I’ve had a long day and so this should be a welcome and relaxing scene. But before I dip my hands into the snack mix and take a sip of wine I start counting the carbs. Then I start wondering if I should have a glass of wine before eating a real meal. My mind wanders deep into that part of my brain reserved for calculating and analyzing my every move and how it might affect my blood sugar level. I decide that I should excuse myself and quickly run into the women’s room to check my blood sugar. The number is inexplicably high so I administer a corrective dose of insulin. Then I worry that I may have possibly overdone it with the correction. What if I have a hypoglycemic reaction in the restaurant?
The dinner party has not even started and I already feel apprehensive. This is an Asian restaurant and while I love the cuisine, the sauces make it very tricky to compute the carbohydrates. Most of our group does not know about my condition. Will I be able to administer my insulin without calling too much attention to myself? How will I respectfully decline a piece of birthday cake without everyone saying “Oh come on!” as if I am simply dieting? Or, how will I deal with the guilt if I decide to go ahead and have that piece of cake? My husband, sensitive and noticing that I am not quite all there, asks me what’s on my mind. “Oh nothing”, I say, not wanting to worry him. After all, this constant analysis never ends and I can’t bother him with it every time it rears its ugly head.
How I wish I had a pal to commiserate with at this party. If I really were just dieting, chances are there would be at least one other person at the table would understand my plight. The truth is, I feel alone all the time, not just at dinner parties but also at business meetings, luncheons, neighborhood block parties, etc. In fact, I feel alone at times that do not involve food at all. Going for a walk (will the exercise bring my blood sugar level too low?), any kind of stressful situation such as a struggle with my toddler (is my blood sugar level rising?), or it is just plain sitting there (sometimes there is no identifiable explanation for a high or low reading.) When we were young, our parents worried for us. As adults, no one can understand this relentless maintenance and worry but another adult living with Type 1 Diabetes.
Imagine being told you had to “manual shift” your heart or kidneys or liver, functions that are supposed to be automatic. This is how I attempt to describe Type 1 Diabetes to my friends and family. However, even if we Type 1s were expert “drivers”, with the highest levels of skill – we know exactly what to eat and when, exactly how much exercise works for us, and we have perfected the insulin ratios for our individual bodies, we would still fail at times. In fact, we would still fail many times. As Dan Hurley mentions in his excellent book, Diabetes Rising: How a Rare Disease Became a Modern Pandemic, and What to Do About It, we were not put on this earth to stare at our blood sugar readings all day. Although he does something I hate – meld Type 1 and Type 2 Diabetes into the same topic – he happens to have Type 1 Diabetes and describes the loneliness and struggle of the disease very effectively. I can’t even begin to list all of the points he nails right on the head. Here is the transcript from a recent interview on NPR:
http://www.npr.org/templates/story/story.php?storyId=122250567&ft=1&f=5#
The fact is, being an adult, everyone assumes I have Type 2 Diabetes and all I need is some discipline to correct the situation. This is not only untrue, and insulting, with regards to Type 2 Diabetes but it could not be further from the truth when battling Type 1 Diabetes . This confusion can make us feel even more alone and misunderstood. Therefore, I applaud the Juvenile Diabetes Research Foundation Bay Area Chapter for reaching out to adults with Type 1 Diabetes. JDRF, an amazingly tireless organization, has identified this dilemma and has created venues for adults with Type 1 Diabetes to interact and share stories, thoughts and fears. I encourage those of us in the Bay Area to join the Adult Type 1 Group. I would like to meet you.
Everyone is welcome to attend the Adult type 1 diabetes Group which meets next on Thursday, January 28, 2010, at 6:00pm in the JDRF office at 49 Stevenson Street, Suite 1200, San Francisco, CA 94105. For more information on attending contact, Carolyn Eisen, Outreach Manager at JDRF by email: ceisen@jdrf.org or by phone: 415 597 6317.
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