It’s almost impossible to discuss common patterns of an individual without including their family life. Click here for an introduction to the complexity of family life with a child with Duchenne.
The Individual with Duchenne
Whether during childhood, adolescence or adulthood, each stage of Duchenne ushers in its own unique set of challenges. There are, however, a few themes that typically stay constant throughout a lifetime.
Perhaps one of the biggest challenges for the individual with Duchenne is the social isolation many live with daily. Human relationships seem much harder to build when you have DMD.
In addition to social isolation, the mental health of individuals with Duchenne can suffer both from the disease itself and from the experiences that often follow. Challenges also arise in school, work or even just finding an activity to occupy the time. Ultimately, confidence and belief in one’s own competency and self-efficacy for building a life of one’s own choosing can often be shaky and threatened.
The struggles to connect and feel belonging can begin early for the individual with Duchenne, largely in part to the challenging behaviors associated with the disease.
Many kids with Duchenne struggle in school to move fast enough to keep up with peers to participate in conversations. Kids with Duchenne may simply be absent from school more often than other kids for multiple reasons, which in turn inhibits the growth of peer relationships. It may or may not be an intentional exclusion, but the fact remains that kids with Duchenne have less face time with peers.
Once the powerchair is introduced, not only are kids with Duchenne isolated more by peer choice, but they are also isolated from inaccessible public areas. Not everyone’s home is ADA compliant and accessible for visiting. Even if the school is accessible, individuals with Duchenne may have to leave the main group of peers to use an elevator, they are separated for bathroom needs, transportation, and maybe even school entry.
As for romance and intimate relationships, most adults with disabilities – including Duchenne – want romantic and intimate relationships with others but the roadblocks are numerous. There’s the bias and stigma from society in general, lack of sexual education for our disabled community, a large lack of conversations about sex in the clinics, challenges with exploring one’s own body, special considerations for partner sex, and having a caregiver who is comfortable with assisting during intimate times.
Mental Health
Not only do individuals with Duchenne often experience social exclusion, but many are prone to mental health challenges simply from the lack of dystrophin. Duchenne tends to usher in a host of mental health issues especially from a young age, but the social exclusion and isolation that individuals with Duchenne regularly experience can take a significant toll on one’s state of mental health.
Add to that the very real fact that lack of movement itself and a lack of routine can instigate depression, plus the enormous challenges in deciphering how one fits into – or can contribute to – society and mental health concerns seem almost impossible to escape.
Regrettably, with mental healthcare carrying a hefty bias with, it many individuals with Duchenne do not get the mental health care they need. This, in turn, often hastens their plummet into mental health despair. Even if an individual with Duchenne is able to seek mental health help, many individuals struggle with finding a therapist that seems like a good fit.
The school setting can be extremely stressful for the child with Duchenne. From learning differences like dyslexia and dyscalculia, social exclusion, a stressful school environment, erratic schedules, physical fatigue, and time away from school, they have multiple challenges in maintaining relationships with peers and teachers, not to mention keeping up with schoolwork while battling a terminal disease.
Challenges in schooling only magnify when considering life after high school. Whether it’s university, work or volunteering, care considerations must be made for the adult with Duchenne: finding dependable caregivers, ensuring all classrooms are accessible, and keeping up with the academic stress. Work challenges carry similar themes: physical fatigue, travel, time away for medical treatment, an accessible workplace, online vs. in person work and the income – health insurance game.
And if an individual with Duchenne isn’t in school and isn’t working, what’s left for them to do with their lives? Often the lack of daily schedule can usher one into a deeper hold of anxiety and depression – both of which individuals with Duchenne are already prone to – which can also lead into existential questions and reflections on self-value.
Independence & Interdependence
Driving a car. Going to college. Moving away from home. Getting a job. Buying a house. These are all milestones that many individuals with Duchenne never achieve. And while many families and individuals with Duchenne understandably grieve these rites of passage, it’s also important to remember that those milestones aren’t the only things that define independence. In fact, they barely even begin to explain it.
The core of independence is self-determination, autonomy, competence, relatedness, and self-efficacy. All of these things can be achieved – yes, even for an individual with Duchenne. It is a multifaceted process, however, supporting an individual with Duchenne in their self-determination. It takes a culture of valuing self-determination within the family, learning life skills purposefully, a caregiver who is willing to be an extension of the individual’s choices, and truly believing that goals can all be accomplished.
From an even broader perspective, interdependence is another life philosophy that fits our Duchenne families as well. Interdependence is acknowledging that all human relationships are intermingled. Everyone gives and takes in a variety of ways. Individuals with Duchenne don’t only “take” from society; they also continuously give back to their community. Ultimately all communities can benefit from the inclusion and appreciation of individuals with Duchenne.