pictured: my grandmother, betty gabel, type 2 insulin-dependent diabetic
i’ve been trying to write this post for a while, trying to find the best way to articulate the meaning behind the conversation i am about to tell you about in a way that accurately depicts the complex nature of the topic.
i’ve rolled it on all of its sides, and cannot find a better way to explain it than this. bear with me.
i have, for most of my time as a diabetic, been cognizant and understanding of the notion that people outside of the d community show themselves to be two things regarding diabetes. curious and uneducated. i have, like all of you, shone those individuals compassion when they ask me why i am wearing a pager, or ask me how often i have to check my sugar levels. i have always seen those moments of curiosity as opportunities to educate.
another ever pervading theme within the “i have diabetes” introduction is the “my aunt died of diabetes” kind of response. it has happened so many times that i have certainly lost count and other PWD’s have spoken on the same issue. why does this happen? i’ve always figured it is rooted in two intentions. first, the stranger wants to connect with me and feels it is appropriate to do so in this way. second, the stranger is genuinely trying to help me, or warn me that taking care of myself is important. i think that the strangers truly believe that sharing their loss with me will have a positive impact, which is what has led me to believe their comments are well-intentioned. i’ve never felt like a stranger’s ‘my friend died of diabetes’ was maliciously said to hurt my feelings.
my usual reaction to a stranger sharing this information has always been the same, “i’m sorry for your loss.” and then the conversation generally moves elsewhere.
since becoming an active agent in the diabetes online community and sharing this sentiment with my d friends at home, i have been preparing what i would say the next time someone made a comment like this to me. and i seemed to settle into a response to their morbid comments.
speed up to current time. last week:
it happened. a stranger said “my friend’s daughter died of diabetes” after i had finished telling her how i had struggled with management as a teen. i had the opportunity to educate and i took it.
(not exact words) conversation:
me: …so diabetes was hard because it was very isolating and i didn’t know anyone as a teen.
her: (head nod) my friend’s daughter died of diabetes and …
……i cut her off
me: you know, (name), i have to tell you that what you just said is something i hear a lot. and while i appreciate that you are trying to connect with me i have to ask you, if i told you i had cancer, would you ever share with me that your friend’s daughter died of cancer?
her: (looking a little shocked) no.
me: i am not telling you this because i want you to feel bad, but just to ask you to extend the same compassion you would to someone who had a disease as ‘serious’ as cancer to those with diabetes.
her: i can’t believe i said that since i have been reading this book about having compassion for youth with cancer.
she went on to tell me about this book.
she responded wonderfully, and exactly the way i would have hoped during my planning process. however, i left that day feeling weird about the interaction. why had i decided on this approach? yes, people with diabetes deserve more sensitivity and compassion. yes, people with diabetes should take every opportunity to educate those around us. but, why does it take introducing a comparison to cancer to get the point across?
maybe you have another idea, and i would really love to hear it in a comment, but to me, i see it as necessary because of this: the general population believes that diabetes is a patient caused disease, and cancer is bad luck. put another way, people with diabetes were asking for it, and people with cancer were not. as we all know in the d community, this is not true. and introducing this comparison must work to debunk that notion, right?
people with diabetes do not ask for diabetes, we do not behave poorly and bring it on through our actions. people with diabetes are not to blame for their circumstances. and just to be clear, i am not talking type 1 only. neither people with type 1 nor type 2 deserve their struggle. there is a such thing as sugar addiction, and it is common. that is chemical. obesity CAN be genetic. that is chemical. no one looks at a piece of cake and says, “i think ill eat this so i get diabetes.’ people with diabetes are people, we are human beings, and we deserve compassion and sensitivity.
yes, these strangers have good intentions. they say these awful things to connect with us, and to help us. but if we keep allowing ourselves be uncomfortable so that the stranger who isn’t fortunate enough to understand the insensitive nature of their comment will remain comfortable, then this commonly held belief, which functions to break us down and deplete our desire as PWD’s to keep working hard to manage our diabetes, will not change.
let’s not let those comments pass. we have to change the way the general public sees diabetes.
you may feel better equipped to handle the feeling of being uncomfortable. you live with diabetes: you live comfortably doing uncomfortable things. i know, i am used to discomfort too.
but i now know that i don’t always have to sacrifice my feelings to make someone else feel good about doing/saying something they shouldn’t, something destructive.
change the game and stand with me.
plan what you will say next time this happens to you. plan it kindly, with good intentions.
be uncomfortable, but be so by speaking up, not by letting people darken your day with good intentioned (but ignorant) comments that break management morale.
you deserve more. i deserve more. the diabetes community deserves more.
collectively we have great power to bring out compassion in our friends and family, and in strangers that say the wrong thing in an attempt to offer support.
let’s create movement in the insufficient standard practice of discussion surrounding diabetes
let’s move onward, my friends, onward.