The phrase “It could be worse,” in reference to having Type 1 diabetes should only be uttered by people actually living with the disease.
When my son was first diagnosed with Type 1 diabetes almost two years ago, I heard that ‘it could be worse’ from many, many people. Sometimes I would smile, sometimes I would agree. Other days, when I didn’t want to hear it, I replied, “Yeah it could be you.” Forgive me for that, I was in pain from the diagnosis. Regardless of what my response was, it was a phrase that was said to me on more than one occasion, and if I truly think about it, it was said to me more on than 20 occasions.
Time went on, the diagnosis became old news and we were successfully living with Type 1 diabetes. The ‘it could be worse’ comments stopped from outsiders, but they started to come from me. People would tell me that they didn’t know how I was doing it, raising a 4 year old with Type 1 diabetes, and I would answer, “It could be worse.” I meant it. I didn’t want a pity party for raising my son. I was happy. He was happy. We were doing ok, and we didn’t need people to feel sorry for us. I answered, “It could be worse,” to put their mind at ease that we were doing fine.
I know in my heart as a parent that it actually could be worse, but now as I have evolved and grown again with this disease, I don’t say that phrase anymore. In fact, I am ashamed that I ever actually said it. Not because I don’t think it some time, but because I am not the one living with Type 1 diabetes, I am just the caretaker. I don’t have the right or authority to say that ‘it could be worse’ in reference to the disease that my son is living with. Only he can make that call.
I started thinking about this phrase this weekend at camp. There were many parents there with older children. They were diagnosed older than my son, so the level of hands-on care that they provide is different. Some had not given a shot to their child or themselves. I say themselves because before I do anything to my son I do it to myself including give a shot to myself, do a site change on myself, check my own sugar, and my son has done all these things to me too. The level of hands-on care is quite different with younger children. Ok, getting back to ‘it could be worse,’ many of these parents used this phrase.
They feel their life has returned to normal since diagnosis, and they claimed that living with diabetes wasn’t that bad and it could be worse…FOR THEM (added by me). Because we were in a parent session there were no children around, but I wanted to scream to them, “It could be worse for who? You? Or you child?” Was anyone asking their children how they felt pricking their finger 10 times a day? Was anyone asking their child how they felt giving themselves shots or changing their own pump site? Was anyone asking their children if anyone laughs at them at school now that they are different?
Now, let me say this, I am not judging these parents. Everyone is different. And maybe their lives haven’t changed that much. Maybe they’re in denial. But I really wonder when my son, or these kids, are checking their sugar, changing their pump sites, weighing their food, counting their carbs, treating their lows, and feeling their highs if they truly believe that it could be worse. Maybe? Maybe not? But it’s not for me to say.