Existential Stress & Distress in Adults with DMD

The excerpt below is from our 2022 webinar Understanding BDMD Behaviors for Adolescents & Adults. Thank you to psychologist Dr. Natalie Truba of Nationwide Children’s Hospital for being our outstanding guest speaker. Click here for the full webinar.

Existential Stress and Distress in Adults with DMD

A significant amount of existential stress and distress begins to appear in the adulthood period of Duchenne.

This is largely because the frontal lobe of the brain is more developed. With this more mature brain development, adults with Duchenne begin thinking at a higher level and they really start to take stock of what it means to care for them. So naturally, significant distress starts to develop for these young men. Honestly, I have not had a single male with Duchenne that I have met as an adult who has not processed a tremendous amount of distress and guilt and fear about their parents.

  • “My parents are aging and can’t take care of me forever.”
  • “My parents – the caregiving is hard on their bodies.”
  • “My parents don’t get to do the things they want to do.”

These adults with Duchenne feel badly about the impact they have had on their parents’ lives… and they carry that guilt around.

I think some of the men are much more prone to doing things that they think are helpful to their parents, but the reasons they’re reducing demands is because they feel bad. So these adults with DMD don’t speak up and they don’t say things because they wouldn’t want to add more to their parents’ plate. They already feel like so much has been sacrificed for them. Many feel like they are a burden.

And that’s how they see it: I’m a burden, they’re sacrificing for me. That’s not how you all as parents see it, but this is what they carry.

There’s also a lot of stress to finding purpose, wanting your own livelihood, wanting your own self-sufficiency and not being able to do that. It’s a special sort of place in hell, right? If, on the other hand, you don’t want to care for yourself and be self-sufficient, and you can’t do it, then it’s not a problem. But if you really want that, and it’s hard – or impossible – to access, then that’s very distressing. Now, everything that other people are doing for you, it kind of feels bad, right?

Because you really prefer to be doing that for them or even just contributing. But you can’t.