Laddie: When I was diagnosed with diabetes in 1976, there was no issue about whether it was public or private. I was new to Minnesota and the only people I knew were either family or co-workers. All of the family knew of my diagnosis and because I missed a whole week of work, everyone at my job knew about it also.
Although my diabetes was common knowledge, my self-care was private. It wasn’t private because I was hiding it. It was private because there was no blood glucose testing and I used Diastix strips to test my urine when using the toilet. In those days I only took insulin once a day and that was in the privacy of my bathroom along with my shower and teeth-brushing.
Life changed as we bought a house, made friends, and had children. My diabetes regimen became increasingly complex with blood glucose testing and multiple daily injections (MDI). A private life with diabetes morphed into a secretive life with diabetes. When I first met people, I didn’t see a need to disclose the fact that I had diabetes. But all of a sudden I had known them for 5, 10, or even 20 years and it seemed uncomfortable to say “Hey, you know what. I’ve had diabetes ever since I’ve known you. I take shots and test my blood many times a day and I’ve hidden it from you.”
It was easier to stay in the closet than deal with that sort of awkwardness. About 10 years ago I had a big coming-out party while playing bridge with a bunch of golfing friends. They were terrified that I was having a stroke and although I couldn’t talk, I was at least able to flash my medical alert necklace. Projectile vomiting of orange juice followed by a parade of paramedics and police pretty much blew my secrets to smithereens.
Very shortly after this episode, I got a pump and became increasingly comfortable with my public persona of someone with diabetes. Most people in my life these days know about my diabetes, but some of the “I have known them forever, but don’t see them very often” people don’t. I still don’t know how to tell people that I’ve known for 30 years that diabetes preceded our relationship…. I am not embarrassed to have diabetes, but I am embarrassed to have been so secretive.
Although the “stigma” of diabetes is a big deal these days, especially the blaming of Type 2’s for “causing” their disease, that wasn’t an issue when I was diagnosed. The terms “Type 1” and “Type 2” were just emerging in the 1970’s and weren’t commonplace until the World Health Organization adopted that terminology in the 1990’s. There was no diabetes epidemic and my secrets were not an attempt to distance myself from the “Other Kind”. My secrets were a reflection of my somewhat secretive nature and occasional social awkwardness.
Now that I have been blogging for over a year, I am for the most part “out there”. Most friends know about my blog, but only a few are regular readers. Why should they be? If I didn’t have diabetes, I would for the most part ignore it and keep it in the category of “that’s not my problem”.
Kate, as someone with Type 2 diabetes, you have a more “invisible” illness than I do. How does your diabetes present itself in public?
Kate: When I think back to my type 2 diagnosis, I remember being confused and upset. I received no education and was sent out the door to figure it all out for myself. It never occurred to me to hide my diagnosis from anyone. I knew so little about diabetes, of any type, and I didn’t have any idea that there was stigma attached to my disease. I guess you could say that I was blissfully unaware. I was probably similar to a big dumb dog, bouncing around, tail wagging, oblivious to what anyone might think. Just doin’ my thing. I didn’t hide my diabetes at work but also didn’t feel compelled to tell anyone. I was happy to share my ideas and findings about food etc. should someone ask. (I probably went on too long from time to time. I seem to remember a few glazed eyes.) I do remember a few slowly shaking heads and looks of concern when someone learned of my diabetes. I didn’t like that at all. Don’t pity me!
As time went on and I began to do research about how to deal with my diabetes, I began to see the stigma that can be attached to diabetes. Every website I visited or book that I read told me that I needed to lose weight. Even my doctor told me “just lose some weight”. Those feelings of guilt began to creep in and my weight issues that had plagued me for most of my adult life started to affect my mood. But for some reason, even then, I didn’t feel that I needed to hide my diabetes. In fact, the more I learned the more I wanted to educate others. Comments made after articles or blog posts that blame T2s for being fat and causing their condition can still inflame me to the point of apoplexy. I have to speak up. I have to try to educate others. I can’t be silent.
The only time that my diabetes is more public is when I’m eating out at a restaurant. I may test my blood sugar to see what level of carbs I can safely consume (like bread or pasta. Usually none). I nearly always make food choices based on my diabetes. I will decline dessert, and when pressed to “go ahead and have some!” I’ll kindly explain why that isn’t a good idea for me. I try not to say that I can’t eat something but, instead, will say that I choose not to for my health. It can be glaringly apparent when I eat the middles out of a sandwich with a knife and fork. That type of activity can bring questions from others and I try to use those situations to educate.
I’ve gone through “seasons” with my diabetes. From being unaware to being a better educated patient; one who wishes to do what she can to educate others. I can understand why others may not choose to let their diabetes be known and I respect that decision. We each have to do what feels best for us.
We’ve talked a lot about friends/work, but what about our family?
Laddie: My husband and I don’t talk about diabetes much. He’s not terribly interested in medical things and I’ve always been a “take care of it myself” person. Fortunately he has always been a master at knowing when I’m low. For many years whenever he asked “Are you OK?”, I would say that I was fine. He quickly learned that “Fine” accompanied by a blank stare was not fine.
My Dexcom G4 CGM has set back our diabetes relationship because in the almost two years that I have used the system, I have not once needed help with a low blood sugar. With my low alert set at 70, I have been warned of lows before they have become too severe for me to handle. (Yes, Medicare, you need to pay attention to this!) Except for living in a mostly low-carb household and occasionally reading my blog, my husband has been spared involvement with my diabetes. He may be getting out of practice.
As a stereotypical “successful Type 1”, I have taken complete responsibility for my self-care, warts and all. My biggest fear is the day when I am no longer able to be in charge. I have not been hospitalized since my diabetes diagnosis except for childbirth and I shudder at the nightmare hospital-stories of many Type 1′s. If I ever have a planned hospitalization, I will work hard to train my husband in Diabetes 101. But we are totally unprepared for an emergency hospitalization. It is not fair to either of us that I have allowed him to be so uneducated.
Growing up, my two sons knew little about my diabetes. I took shots in the bathroom and did the same with BG testing once it replaced urine testing. Diabetes was always there but in the pre-MDI days, it didn’t demand a lot of attention. As they got older, they were too busy to notice much of what I was doing. Reading my blog has been a total eye-opener for them.
I did not worry about my sons getting Type 1 and never once pressed a Diastix strip into a wet diaper or tested their BG. Statistics indicate that neither they nor their children will get Type 1, but I see too many multi-generational diagnoses in the DOC to be totally confident. My husband’s father had Type 2 diabetes and statistically my sons have a higher risk of being diagnosed with that rather than Type 1.
I don’t come from a large family and I have been spared helpful comments from distant relatives about okra, cinnamon and losing weight to go off insulin. With a sister who has Type 1 and a father-in-law with Type 2, my family is more educated about diabetes than most.
Kate: It’s interesting that discussing my diabetes with my family doesn’t happen all that often. Well, except for Ray. He takes the brunt of my frustrations and railings. He’s a good man to put up with me when things aren’t great. I haven’t made a habit of “educating” my extended family, it’s more that I teach by example. They have seen me forgo certain foods at family gatherings or have just a bit of something yummy (like stuffing at Thanksgiving!) I rarely have had “diabetes police” moments. When asked if I can eat something I simply say, “If I want to and am willing to deal with the aftermath, then yes”. My family knows about my recipe tweaks and use of almond flour. They know that I’ve made drastic changes to how I normally eat, but they usually aren’t there to see it. When it comes to the holidays I try to keep things “normal”. I still make all the foods we traditionally eat and adjust what I consume. Sometimes that’s so hard to do! Sometimes I don’t succeed.
Thinking back over how I fed my family as they were growing up can lead to some feelings of guilt. Yes, I fed them mac and cheese from a box. Yes, they had chicken nuggets and pizza. Yes, we ate too much processed foods. Yes, we were a normal family. I can’t/shouldn’t beat myself up about it. I didn’t know then what I know now. Here’s the kicker: now I DO know that a lot of those processed foods aren’t so good for us, and yet I find myself falling back on those standards when my grandsons are here. Should I be the “tree bark Grandma” who only feeds them “that healthy stuff” or should I be the “fun Grandma” who lets them eat what they want? I have found a happy medium, I think. There is always at least one veggie with every meal and often fruit for dessert. Sugar free popsicles are in my freezer at all times and mixed nuts, mini bell peppers and cheese sticks are favorite snacks for them. Yes, I still make mac and cheese sometimes and I’ve been known to buy a pizza but I’m more aware now of the food I “push”. My family is aware of my diabetes but I try not to make it the only thing they see.
Laddie: As a grandmother, Kate’s comments about being the ‘tree bark Grandma” versus the “fun Grandma” really hit home. I have recently tightened the reins and quit buying junk cereals and feeding grandchildren pizza every time that they sleep over. (Don’t tell their mother that although they’re eating more nutritious foods at my house, I still let them watch TV….)
Kate’s history shows more openness about diabetes than my past. I suspect that it is more related to personality differences rather than our type of diabetes. Next time that I find myself retreating into the closet, I’ll think of Kate and envision a big, goofy dog who has no secrets.
The topic for our fourth Type 1/Type 2 Conversation next Tuesday is Food. This reflects the impossibility of discussing any type of diabetes without food facts, myths, and opinions coming to the table. Please join us.