Guilt, Shame and the Adult with Duchenne

The excerpt below is from The Duchenne Life’s episode “Suicidal Ideation and Duchenne.” Thank you to our guest, psychologist Dr. Natalie Truba of Nationwide Children’s Hospital. Click here for the full webinar.

Guilt, Shame and the Adult with Duchenne

The guilt piece is hard because I think there’s a lot of reasons why adults with Duchenne carry guilt – especially when it comes to mental health.

First, I think there’s guilt that stems from the desire: I want to take care of them, but they’re taking care of me. For example:

  • “I worry about how I’m impacting my parents’ health.”
  • “They are getting older and they have to do these things for me. I think that’s hurting them.”
  • “I worry about how they’re eating…”
  • “Who’s gonna take care of them?”

Another place that guilt comes from is Now I have mental issues. When I bring it up, I feel like it’s a burden on my parents because now they have to take me to the hospital or they have to watch me or make sure I’m safe. For example:

  • “I have all these physical needs and my parents do all these things for me.”
  • “If I have mental health issues then that’s another thing that they need to worry about and address.”
  • “I don’t want to add to their workload.”

I’ve often heard I just want to be mentally okay, so my parents can just do the DMD stuff and we don’t have to worry about other stuff.

Ultimately, what I think mainly contributes to where people feel and carry guilt are what is it about your mental health experiences, the people that are there to support you, and what your access to care looks like? All this means that guilt is very individualized.


Shame is also hard, because shame is an emotion that stems from a way that we want to present or see ourselves. Shame typically stems from pride.

In our community, I think there’s a big feeling on the part of the men with Duchenne to have the need to be strong. For example, I hear these things a lot:

  • “When I talk about things, I know my parents get upset.”
  • “I need to be strong, because I don’t want to upset my mom” (or “I don’t want to upset my dad.”)
  • “I just need to be strong, and I just need to be okay, and then my parents will be okay.”
  • “This is my burden and my cross to bear. This is what I can absorb for my family.”

So there’s pride in the belief “I do this for my family. I’m sitting with this and I’m suffering so they don’t have to.” And if you don’t do that, then you feel shame, right? Because “now I’m weak.” And the thought process often goes, “I am not doing XYZ. I have this expectation for myself, and I’m not doing that thing.”

But it’s not always necessarily healthy, right? Nobody is strong all the time. And what I tell people is: “when you’re presenting as strong and you’re not, that’s not being strong, it’s just lying…

True strength is when you can say, “I’m actually not okay right now and I’m still going to do this today. And this Tuesday, I’m working on this, and I know that I’ll get through this. And this is a difficult moment, (or a difficult day or difficult period of my life,) and I’m going to do these things to get through it and to try to do whatever I can to help myself make it through to the other side.”

So sometimes it’s helpful to think through what we mean when we say strength? What do we mean when we say pride? What do we mean when we say shame?