There are going to be extreme levels of loss and stress with any kind of life altering illness but with Duchenne, the losses and stressors tend to skyrocket during adolescence. There’s typically the mobility change and acquisition of a wheelchair. The dynamics of families and peer relationships change, daily routines and structures change, and the frequency of medical appointments often changes. The list really can go on and on and on.
In particular, the ever-increasing physical dependency of Duchenne adds multiple challenging layers to adolescence… and it doesn’t stop at just making friends. Due to the intricate connections between family, friends, and self-development, an interruption in one piece will necessarily affect the others.
In fact, it is safe to say that the physical decline and loss of social opportunities for the adolescent with Duchenne frequently sabotage the skills needed to develop a full identity of self as an adult.
People need a world that they can actually access. They need a world where they can be around other humans. Everyone needs a world where they are included. Connection, belonging, being valued… these are all basic things humans need. But for many adolescents in our Duchenne community, these needs feel unattainable.
Even beyond the public structure of society, the disease itself can make relationships challenging. Important relationship skills – like willingness to learn, open to personal growth, becoming comfortable with discomfort – don’t come naturally to everyone, and they can be particularly daunting to an individual with Duchenne. There needs to be a give and take rhythm in all relationships.
More often than not, inaccessible public locations, bias, and stigma prevent our adolescents with Duchenne from engaging with the outside world. Even though the public sector often excludes them, connection, belonging and community are still possible.
Despite comorbidities patterns, social obstacles, resistance to vulnerability, and their shrinking world, the individual with Duchenne can create meaningful connections with others. From the medical equipment to inaccessible public locations, to bias and stigma, individuals with Duchenne face so many obstacles, but belonging and connections are possible. It begins with family and friends taking the time to build relationships and to connect.
Puberty, Sexual Curiosity & Duchenne
“Individuals with Duchenne still go through puberty and are having all the hormonal shifts and feelings that their peers are having.” – Carolyn Kelley, DPT
While teens with Duchenne have many unique struggles in life, they also have common ones, too. Not only are their lives filled with experimental drugs, IVs, and power chairs, but they also have too much homework, embarrassing parents, and a curiosity about their sexuality.
Unfortunately, our adolescents with Duchenne have almost no answers to the many uncertainties that surround sex and sexual development for them. From stigma and lack of sexual education for the disabled community to the nitty gritty of solo sex and partner sex, we’d like to discuss these topics openly with our community.
After all, people with disabilities have desires, too.
Independence & Interdependence
As you may know, Duchenne Muscular Dystrophy affects the muscles in the body. What many people don’t know is that Duchenne often affects brain function, emotions, behaviors, and sleep as well. And while many Duchenne families have built very comfortable and supportive environments to support these additional stressors, individuals with Duchenne also need to learn and practice life skills.
Not only are common adult responsibilities – like attending school, getting a job, and managing finances – exponentially more complicated for the teens in our community, but they also have the added project of transitioning from pediatric Duchenne care to adult Duchenne care. Our adolescents with Duchenne face a surplus of barriers when turning into an adult. There are often cognitive and social-emotional challenges to address at the very time when health status may be changing rapidly.
The adolescent with Duchenne has many additional layers to navigate on top of an already challenging time and they need support from multiple sources.
For decades, the primary focus of care for individuals with Duchenne Muscular Dystrophy has been preserving muscle function. As a result, more and more of our adults with Duchenne are living well into their 20s, 30s, 40s, 50s. The problem now, however, is that in many cases, these adults really are “just living.” By identifying and discussing the “elephants in the room,” we can help our adults with Duchenne truly live during these newfound years.
With Duchenne, there’s so much fixation on the wheelchair. But when the individual with Duchenne actually gets to the point of needing a wheelchair, there’s so much more involved than just ordering one. There is the fear, the grief the relief… the ever-growing social exclusion… and ultimately the need for a new plan in life. This period of time when you stop walking is so much more than just a physical change.
One such elephant is the increasing dependency on another human at the very time the adolescent brain craves independence and exploration. This tension is felt in the sudden legal autonomy of medical decisions, personal care attendant dynamics, and also the potential for romantic relationships.
While the school years often bring multiple challenges for the student with Duchenne, the routine that school provides also offers important opportunities for personal growth and human connection. Unfortunately, once the high school years are over, all these built-in benefits that the school routine provides suddenly disappear. Ultimately, it can leave the adult with Duchenne vulnerable to social isolation, low self-esteem, depression, and decreased tolerance for new situations – the perfect recipe for mental health struggles.
It’s not widely known that the rate of suicidal ideation is higher in the disabled community than in the general population. Even within the disabled community itself, these thoughts of suicide, suicide plans and attempts appear to occur more often in a population with limited functional abilities or limited capacity for self-care. In other words, our Duchenne community likely has one of the highest rates of suicide contemplation, plans and attempts in society.
It doesn’t have to be this way.
