With a progressive muscle wasting disease like Duchenne Muscular Dystrophy, students with Duchenne have a huge amount of change and grief to cope with, so much that it’s even challenging for our adults with Duchenne to process.
That first year using a wheelchair can be particularly challenging. From grief to anger, to a new level of isolation, that adjustment period introduces multiple layers of challenges in addition to “typical school stress.”
Unfortunately, in addition to the emotional dysregulation brought on by the lack of dystrophin, many of these students with Duchenne do not have adequate coping skills to handle the change and grief that goes along with having Duchenne. Students’ misplaced emotions over their terminal disease or exclusion from the other students can often complicate school situations.
Rarely do these individuals with Duchenne have someone to talk to who really understands. Even if they did, the stigma of caring for male mental health still runs deep in our culture. The students with Duchenne – who are mostly male – may simply refuse help.
It’s near impossible to manage emotions when you don’t have the skills. Unfortunately, pushing these feelings down and ignoring them certainly doesn’t work. In fact, that strategy can even breed suicidal ideation.
To top it all off, when the brain is in this heightened state of emotion, learning is hard. Really, really hard.
