Change and Duchenne Family Dynamics

The following is an excerpt from our Mental Health Matters podcast with DJ Kimble and Heather Benbrook. DJ Kimble is 42 years old with Duchenne. Heather is a school counselor and a Licensed Professional Counselor (LPC). Click here to listen to the full episode.

Change and Duchenne Family Dynamics

To begin, I like to think of grief as a normal process in life. No matter what stage of life you are in, whatever struggles you’re going through, you’re going to experience grief.

Grief is a normal reaction to some type of loss or change, whether it is as big as the loss of a life or as small as just a change in routine. Change, stress and grief accompany all of us throughout our lives – especially those in a Duchenne family.


With that in mind, when you’re talking about any kind of terminal illness or life altering illness, you’re going to have extreme levels of stress and extreme levels of loss. Not only loss by death, but also loss through changes that happen in your life: mobility change, changes in the dynamics of families, changes in the routines and structures… the list really can go on and on and on.

When we finally talk about these changes and losses, when we have the opportunity to work through them together, and when we come together to normalize grief, to normalize loss and to talk about it, it finally opens up avenues to be able to get through that grief. It’s a pathway forward that our Duchenne community needs deeply.


So, let’s talk about stress. Stress, along with grief, is the natural reaction to any kind of change, too.

Anytime you have two people involved in a relationship, you’re going to have stress. You’re going to have conflict. You’re going to have disagreements.

Now, whenever you’re thinking about Duchenne and family dynamics, there are necessarily a lot of changes that will happen and that will be stressful – with siblings, with parents, with the individual with Duchenne.  On top of these variety of stressors, there’s also all different degrees of stressors. When stress levels rise in the family unit, you’re simply going to have natural reactions of conflict.

Most of us know the stress responses of fight, flight and freeze. I’ve recently been reading up on two more that they’ve added: flop (which is like just flopping and giving up) and fun (which is trying to please people). So those are two more stress responses that are very common and unfortunately go unnoticed.

There will be arguments in the Duchenne family. There will be stressors in the Duchenne family. Your relationships are going to struggle with tension created simply by an individual’s natural stress responses. For example, if you’re a “flight” person and you’re trying to get away or withdraw, that alone can cause some stress in relationships. Maybe your partner, or sibling or parents want to talk about the stress instead of fleeing. So there are going to be some struggles and conflict there, too, for both parties.

When the conflict happens and when people deal with it differently, it’s very hard. It’s important to learn about those stress responses. Learn what your responses are. Learn what your loved ones’ stress responses are. That knowledge can really help you with those relationships – how to approach the conflict when it happens and how to cope with them as well.

Managing Change & Stress

There are so many things that we can do to manage that change and stress.

  • Talk about it – First of all, I think talking about it is a priority, because if we can’t talk about it, we’re not going to be able to work through it.
  • Normalize it- We must normalize that we are all experiencing change, stress and grief in our lives. We must normalize that we’re experiencing loss in our own ways and that everyone’s experience is different. If we can’t normalize that these feelings are highly individualized, then we can’t get to the next point.
  • Understand it – We need to understand change, stress and grief and what they truly are. A lot of people have the misconception that grief is just about death, but it’s not. It’s about everyday little situations that we experience – experiences and changes in behaviors and situations. So once we understand the basics of change, stress and grief, then we can get to the point where we can actually start doing something about it and take action.
  • “I” statements – Some of the things that we could do is to have conversations with families. Talk with friends about your changes, your stressors and your grief. Talk about your real feelings about it. There’s a strategy called “I” messages that I encourage people to use. For example, I’m feeling this way. I’m feeling angry. I’m feeling stressed. I’m feeling confused. It’s just a simple “I” message. I feel ______ because _____ or I feel _____ when _____. It’s just a simple statement so guards and walls don’t go up. Sometimes when we’re trying to talk about something, it can feel like we’re almost attacking the other person. Grief can be one of those things that people put a wall up pretty quickly about, so being very factual and focusing on feelings can really help.
  • Be in the moment – I know that it’s probably kind of one of those fad things that people think about, but it truly is helpful. When we think about the past, we can’t control anything there, right?We can’t go back, we can’t change it, and often these depressed moods start setting in. When we think about the future, that often causes worry and anxiety. So be mindful and be in the moment that we have right now and enjoy those moments that we do have, because those moments are precious. No one truly knows when we’re not going to be here anymore and so think about that and just be in that moment and enjoy life in the moment – that’s where you find true happiness. Obviously we can’t be mindful all the time, right?But definitely try to enhance that and increase that as much as we can.
  • Take care of your body – Trying to be physically healthy. Try to be as active as possible. Be with nature. Just being outside in the sun and getting that vitamin D can really help our mental state. There’s so much that’s connected with our brain and our bodies that we it’s really important to take care of that as much as we can.

So, I encourage you to start talking and normalizing change, stress and grief. Take care of yourself and be mindful. Remember that having connections and feeling like you belong is really important when we’re talking about change, stress and grief – especially the kind that Duchenne families face.