This guy opened the first ever Diabetes In A Minute a series of mini documentaries about living with diabetes at Friends For Life 2015 in Orlando.
He’s got scrapes, but obviously diabetes isn’t one of them. For now. When this video was broadcast across four big screens, Henry left saying, “Everyone knows my name is Henry.” And it’s true, people came up to Henry and complimented his video, to which he replied, “Maybe next year you can make a video.”
He is young and he is innocence. In the video, Henry blithely tells the audience about his scrapes, and in the next breath he shows off his pump and continuous glucose monitor (CGM), as though these two were equal. One day the stigma and needed longanimity of “diabetes” will outweigh scrapes, and that is a natural rite of passage.
When a stranger asks me about the gear Henry is wearing or I explain to a colleague why I had to step out of meeting a few days prior, T1D comes up, and I briefly explain the basics. Usually, this scenario goes smoothly and hopefully someone understands more about T1D. However, sometimes this moment is teeth cringing, and an over-sharing stranger tells me about his or her dead grandmother in the produce aisle. When people respond after learning of my son’s diagnosis, I believe they are usually attempting to relate or don’t know what to say, but as a parent of a child with diabetes, the two most dreaded responses from someone who learns of my child’s disease are:
1. Oh, I’m so sorry. My grandma / great aunt / grandfather’s cousin died of diabetes. They were 48 / 52/ 57. At least I think it was Type 1, or maybe it was Type 2.
I usually say, “I’m sorry to hear that,” but I want to say, “I’m sorry to hear that. Once you figure out if it was Type 1 or Type 2, you might want to read a little more about the amazing treatments available today for people with T1D. Oh and hey, have some common sense. Maybe don’t tell me about your dead relative while I’m grocery shopping with my four year old son who happens to have the same disease that killed your grandma / great aunt / grandfather’s cousin.
2. Well, at least it’s good he has it so young, so he won’t know the difference when he’s older.
I usually say, “A lot of people say that,” but I want to say, “A lot of people say that because they are misinformed. I’m sure he’s noticed his older sister is not wearing a pump and getting blood sugar checks 10-12 times a day. He’s also noticed that the other twenty-three kids in his preschool class don’t check their blood sugar, wear pumps, or go on field trips with massive medical supplies in a backpack. Also, those 13 or so years, which he would of had if he were diagnosed later, with a normal, salubrious blood sugar that are conducive to his longevity, I don’t mourn those.”
I think Henry’s got some scrapes, but hopefully as people become more educated about T1D they won’t add a new scrape. The first step toward empathy is meeting someone with T1D, and the second step is learning what to say. It’s great to hear, “I’m sorry to hear that. Can you tell me more about Type 1?” or “I’m sorry to hear that. I’m not sure I really understand the difference between Type 1 and Type 2,” or even, “I’m sorry. I think I know someone else with that.” People with T1D need advocates to understand the difficulties and trials of living with T1D, so listen to their stories before you tell yours.
4 thoughts on ““I Got Scrapes, And This Is Not a Scrape””
Ah! What a splendid young fellow! It’s grand that he has a basic understanding of his body’s needs. You’re teaching him so well. I, too, have kids with conditions that can take time to explain. I understand your point of view here.
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Rachel, I have been reading your posts and I think you are doing an awesome job sharing and educating. I don’t know anything about T1D but Im glad to learn. I think Henry is amazing and so fortunate to have you and Matt as parents. I think he and Eleanor would be good buddies!
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