Supporting mental health in Duchenne care
Betty Vertin, who lives in Hastings, Nebraska, has three sons with Duchenne muscular dystrophy, the first diagnosed in 2010 at age 4 and the other boys within the following year. She describes the tensions of managing treatment needs with mental health sensitivity.
Transcript
We’ve only had a mental health — I wouldn’t call it a crisis — but where mental health really became an issue. And it was with my oldest son, and he was still middle school age.
So I feel like, as a parent, I had a little bit more control over his compliance because he needed a ride to the appointments. I was the one that got his med boxes ready to take the meds that he needed.
I mean, we did some, like, telehealth stuff with some specialists. Like, I was the one that kind of, like, prompted all of it and set it up. So it was very easy for me to make sure he was compliant.
Now, to say, if he were to go through the same thing now as a freshman in college living on campus, it’d be a completely different ballgame. And I probably wouldn’t have nearly as much control over keeping him compliant.
And as far as the sensitivity, I’ve just always been open with my son. And when he started having a mental health issue, struggling with anxiety pretty intensely, we just talked about it, and I never made it seem like taboo.
I mean, I just thought, “This is what we’re dealing with. And it’s the same as if I’m dealing with your heart’s acting funny. We’re going to, like, dive in, and we’re going to treat it. You’re not feeling great, you know, mentally, emotionally. We’re going to dive in, and we’re going to treat it.”
I never made it like it was this big, separate thing. And he honestly was so relieved to feel better that he was not sensitive about it. I don’t think that he felt like he needed to be embarrassed or worried or that sort of thing.
And honestly, I’ve even written about it in a column. And I asked his permission first, and he’s like, “Yeah, share my story because I want other people to know it’s OK, and you can feel better.” I mean, I haven’t had a ton of experience with it, but that’s how our experience has gone.
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