I don’t have kids, but that doesn’t mean I don’t absolutely love the ones in my life. The first one I really “met” was born a few months after my mom died. Coming off about a year as a caregiver for a terminal patient, I was unemployed. My friends’ house was a haven away from my tiny apartment that always felt like the walls were closing in. I spent a lot of time there then. There’s nothing better for grieving a loved one than baby therapy, and this one was super cuddly, although he wouldn’t like to hear that as a rising high school senior. A few years later, he got a sister, and a couple of years after that, my brother had his first of four. For the record, that would be six kids between the ages of 2 and 17 that are really important to my life.
While my disease is mostly invisible, there is the matter of the Class III medical device that is attached to my body 24/7. It’s usually concealed by clothing, clipped to my waistband, and covered by whatever shirt I am wearing, but if you eat with someone often enough, there is no point to subtlety. They are going to see the plastic tubing and see you press the buttons, which make noise.
When they are little, kids will just take your word that it’s just called a pump. As they reach the stage that demands “why?” every two seconds, they want to know what it’s for and then how it works. Hopefully they have seen you use it enough that they are comfortable with it by then. But what do I know about age-appropriate explanations? My parents always answered our questions, and I am not sure there was much moderation. I want to tell them the truth, but I don’t want to freak them out and make them worry.
The first time it happened, it caught me totally off guard. I was speechless as my mind raced as I tried to find the right words – a rare occurrence at best. Finally, I looked at the toys scattered on the floor around me and I told the toddler next to me that, similar to how toys sometimes break, my body was broken, and the insulin pump I wore helped it work properly.
As they grew older they asked more about the details, which allowed me to elaborate about the chemical that helped me make food into energy. Around that time, the first two kids’ next door neighbor was diagnosed with Type 1 diabetes, and I hope (and suspect) that their early exposure to my condition gave them an understanding that took away the stigma I felt growing up.
That’s the age where they will accept your condition on the same level as your eye color. We patients talk about lessening the stigma of chronic conditions and mental illness, which is so important to the treatment of us as people. It’s hard to let go of the impressions we formed when the adults who raised us could only discuss the plight of a friend or family member in whispers, and a stigma is born, rather like the Harry Potter novels referring to villain Voldemort as he who shall not be named. It is only by acknowledgement of reality, no matter how bad, that we can remove the stigma and begin our plan of attack.
Diagnoses of many chronic illnesses are increasing, and telling ourselves that kids don’t see it just because we want to protect them to won’t make it so. Fibromyalgia was not on the radar at all when I was a kid, and the forecast is that one in three kids born today will be diagnosed with diabetes. They are going to at least know someone with a chronic condition, and talking about it before then will help them see that friend or colleague or themselves as someone not to shy away from. They could be the first ones to see us for who we are and not what we have.