Managing the Emotional Struggles that Come with Duchenne Muscular Dystrophy

After receiving a diagnosis of Duchenne Muscular Dystrophy (DMD), the focus tends to be on how to deal with the physical side of things.  There might be discussions about accessibility, physical therapy, and other treatment options.  All of these discussions are great and certainly have an impact on living with the disorder, but there is another part of DMD that needs to be looked at and that is dealing with the many emotions that can sometimes be overwhelming for a youngster.

Growing with DMD, a progressive disease that causes muscle degeneration primarily in boys, is challenging. Some kids require the use of a walker while others would eventually need a wheelchair, and if the disease affects the heart and respiratory muscles, then a child can also require the use of a respirator.  All in all, DMD provides plenty of things to deal with for those with the disorder and their families. 

Frustration, anger, self-pity, anxiety are just a few of the emotions that can run through a young boy’s mind when they are learning to cope with the disease.

But, there is always a way to deal with the emotional side of things. Since DMD strikes young kids, particularly boys, it’s critical that caregivers and family members clear a path for emotional health. There are many highs and lows when living with a degenerative disease, which is why it’s critical to ensure a safe environment for everyone to ride through the turbulence and deal with the emotions head-on.

The importance of talking

Talking about what is going on is so important - for everyone involved. Try to talk openly about what is changing physically, talk about the emotions that are running through the mind. Open communication plays a large role in being able to deal living with a disease like DMD. 

This is not the time to keep a stiff upper lip, to bury feelings or to try and sweep them under the rug.  This is the time to encourage open dialogue and to get everyone talking about the disease, its effects, and how everyone is feeling about it.

If talking about feelings with family and friends is just not something that comes naturally - that’s ok.  Find other ways to get the dialogue going, find support groups (in person or online), reach out to medical professionals or find other families that are going through the same thing. Find whatever method works best for everyone and talk.

Be proactive to the child’s changing needs

This is not necessarily the easiest task in the world, but when a child is dealing with a condition such as DMD, it’s important that the parent or caregiver tries to proactively meet the child’s needs.  Psychic ability is not required, but planning is.  For example, before the school year begins, take time to discuss what accommodations might be needed in the classroom, school, and schoolyard to ensure a safe environment for learning and play. This will also play a big part in preventing him from being excluded from regular school activities. 

When a child, particularly a child who faces a few more hurdles than most feel like they are actively playing a part in something. Whether it’s a classroom project, an activity or even a game during recess, they are more likely to thrive. They are also more likely to develop their own positive coping mechanisms to deal with difficult situations.