Two years into this journey, Madeline has gone through many emotions and thoughts regarding the impact of T1D on her life. If you ask me, her body image issues top the list of current concerns. If you ask her, however, she will tell you that the thing she resents most about T1D is that it forces her to have to stop what she is doing in order to manage its demands.
And because of this, she feels like she is a “fun-killer”: someone who wrecks the fun being had by herself and others.
I have tried very hard to assuage her concern. To assure her that she is not destroying others’ fun. To remind her that fun can still be had, waiting right there for her when she’s ready. To reason with her that her friends know that she has T1D and that, being her friends, they would not consider it to be her fault if fun had to stop for the few minutes (most of the time) it takes to return her to wellness. Yet, she has insisted that I am wrong. She has told me that her peers avoid her at times, make it difficult for her to join in an activity sometimes, because “I might have to stop and test or take sugar and they don’t want to wait for me. I’m a fun-killer.”
I’ve assumed that this is her perception: real to her, and therefore invoking corresponding emotions, but perhaps not aligned with reality.
Recently, I found out that my assumption was wrong. That Madeline’s concern is spot-on, accurately described and potently impactful on her self-esteem.
Madeline attends a day camp in our little town. As part of the programming, the kids take a hike one morning each week. There is no medical oversight provided to her during camp hours; I am the medical staff. So, I was trying to decide if I should accompany her on the first hike, to monitor her and to gauge the possibility of her doing future hikes without me. She did not want me there, after all. But what she told me made me realize that I had to be there, at least for the first hike: “If I feel low, I am NOT stopping. I am not testing myself. I am not getting out a juicebox. I am NOT stopping, because then I can’t stay with my friends.”
So, as that hike commenced, Madeline quickly grouped up with four other girls as all of the kids made there way onto the narrow path. I paced myself behind her, not wanting her to feel followed, on the condition that if she felt low, she must stop and wait for me to meet her with her D-supplies. I assured her that I thought her friends would stop to wait for her, especially if she asked them.
About ¾ of the way through the hike, I came upon Madeline standing to the side of the trail as kids filed by her. When I reached her, she told me she felt low but that she did not want to test and treat there. She said she thought she could manage the remainder of the hike, and that we could take care of D when we left the trail. I reluctantly agreed, and asked her why she did not ask any of her friends to wait with her. She replied that she had asked them, but one person in the group said that she wanted to keep walking so as not to fall behind, and the others followed that lead.
“See, Mom?” she said. “I am a fun-killer. I told you so.”
This experience broke my heart, because it made me realize that Madeline does not currently have a peer group who “has her back” when it comes to T1D. Now, her peers are 8-9 years old, so perhaps expecting such support is not reasonable. Perhaps believing that girls this age will set aside the group needs in order to support an individual is not realistic.
All I can do is try to convince Madeline that there will come a day when she will have friends who will stand by her when T1D demands attention. That perhaps her current friends are too young to really understand or lack the awareness to know that Madeline needs their support now. That someday, this will change, and she will have friends willing to stay in the trench.
I sure hope that day comes sooner than later.