How many times have I heard that response when people find out I have diabetes. An upwards inflection, a little surprise, a lot of confusion. I know that it is an involuntary response – perhaps because people weren’t expecting that to be the explanation to their question about the pager-like device I have just pulled from under my clothes, or the little beeping machine on my lap, or why I am guzzling jelly beans like a woman possessed.
We know that it is because diabetes is an invisible condition. Unless you look for the signs, who can tell that my beta cells stopped working over 17 years ago? And even if you did look for the signs, what exactly would you be looking for?
We talk a lot about how frustrating it is to have a condition with limited visible signs. It means that people say things that annoy and frustrate us, or that people have limited knowledge and understanding of just how much work goes into living with a condition that has such limited visible signs.
But sometimes, I am grateful for the invisibility. Sometimes, it is nice to be able to package up all the diabetes things and keep them hidden away – to tuck my pump more securely in my bra and make sure that there is no tubing poking out and to hide away my BGL meter and jelly beans and glucose tabs. It’s nice to not give people a reason to ask.
I know how exhausting it can be answering the myriad questions people have about diabetes. Of course, a lot of the time they are downright rude, but most of the time, they are borne from nothing more than human curiosity. Sometimes it’s great to try to explain what living with diabetes is about to someone who genuinely wants to know, or to share my diabetes story.
How we each deal with our diabetes is highly personal. We can shout about it from the rooftops, we can whisper about it amongst only those we choose or we can remain silent and not share with anyone. And it’s all okay – it’s okay to change how we want to speak about it.
This last week, a lot of people have asked me about the green band around my wrist. I explain that it is from a conference I attended for people with diabetes.
‘You have diabetes? Really?’
I nod. And sometimes I sigh. Or smile. But I answer their questions. I gently point them to kind ways to talk about diabetes. I highlight how there is no one way that people with diabetes look. I bust some myths and ask them questions about their diabetes knowledge.
And frequently, I hear them say, ‘I had no idea about that. I had no idea that there was so much involved in diabetes management.’
I look at them and take it in. ‘Really?’ I ask. Because I wonder how they could NOT know.