The info below is from “Understanding B/DMD Behaviors for Adolescents & Adults.” Thank you to our guest speaker psychologist Dr. Natalie Truba. Click here for the full webinar.
Mental Health Obstacles
Beyond the stigma, beyond the shame, beyond the guilt, the challenges to accessing mental health help sometimes seem insurmountable for the adult with Duchenne. It’s achievable, definitely, but it’s a long and windy road requiring unwavering persistence and advocacy.
Anxiety
Due to the very nature of this progressive disease, identifying anxiety and how to treat it gets more complicated for DMD than the general population.
Anxiety itself is defined as the feeling you get when your body is telling you something is wrong, whether it is correct or not. For example, general anxiety can mean there is a genuine threat, but it doesn’t always mean that. Common practice for managing anxiety entails battling the process of your brain or body telling you there’s something wrong when there isn’t.
But what if there is something wrong? And what if it will always be wrong… like with Duchenne?
Exactly. Identifying anxiety in individuals with Duchenne gets tricky because they live with a very real threat to their health every moment of every day. On the other hand, anxiety in an individual with Duchenne isn’t necessarily tied to their condition. It can be very challenging for a provider to create a treatment plan if they can’t figure out the difference.
Depression
As for depression, occasional low moods or feelings don’t necessarily mean that you are depressed. On the other hand, if you are socially isolated and you don’t move your body much – as is common with Duchenne – you will feel depressed in response to the isolation and inactivity and not socializing.
So, it seems like depression will indeed occur in individuals with Duchenne if preventative steps aren’t taken. But how does one “prevent” these cascading mental health challenges when society just isn’t equipped to accommodate a powerchair or functional differences?
Obstacles to Getting Help
To begin, many adults with Duchenne have significant mental health challenges rooted in at least two difference sources: isolation and physiology of the brain. And yet, many adults are simply unaware that they even need help.
Most of our adults with Duchenne experience extreme social isolation, or at least infrequent contact with others outside their caregivers. Without the experience of seeing how other humans act, interact and respond, it can be very challenging to identify a “functional” baseline for oneself. If there’s minimal interaction beyond the immediate caregiver bubble, having enough information to engage in productive self-reflection may be impossible.
To complicate matters even further, mental health concerns tend to be significantly more complicated to identify than for the general population due to the physiological effects of Duchenne on the brain.
If an adult with Duchenne does choose to pursue mental health help, simply finding a provider who has time on their schedule – or is at least a little qualified to work with DMD – may take months. After that hard work pays off and a good candidate has been identified, there’s no guarantee the provider will have time available, will deem themselves qualified to work with an adult with Duchenne, or will want to take on a challenge like Duchenne.
If an adult with Duchenne is successful in securing appointments with a mental health provider, the truth is that whoever is working with the adult with Duchenne is working in the dark. It is incredibly unlikely that a provider will have experience working with DMD and even less likely that they have DMD themselves. True, as professionals, they will likely do the best they can, but there is just no roadmap for the providers to follow, particularly when it comes to two hallmarks of Duchenne: anxiety and depression.
More to Consider…