Multiple studies have shown that parents of children with Duchenne Muscular Dystrophy are prone to developing physical health concerns. Many studies also show that parents in our community are prone to mental health concerns, specifically anxiety and depression.
Although mental health still tends to be stigmatized in our society, it’s an important topic to discuss. Once we better understand why the rate of anxiety and depression is higher in our parent population, then we all work together to help change that statistic.
Indeed, there are many ways that extended family and friends can help. There are also ways that parents can lighten their own load. Together, as a community, we can make a difference in the lives of our Duchenne families.
The life of a parent of a child with Duchenne is full of these psychological events. There are many situations that cause feelings of insurmountable hardship or even feeling trapped. From the imminent need for a powerchair, to ultimatums from their employer, the frustrating behaviors of their spouse, or even the need to arrange a memorial service, psychological events simply become part of every day life.
While it can be extraordinarily challenging to accept the pain and struggle that DMD ushers into lives, parents can do it. Parents can learn what they can control. Parents can identify what they cannot control. Parents can identify the personal patterns – behavioral, cognitive, emotional – that keep them trapped. Parents can significantly reduce rates of anxiety and depression in our parent population.
Whether parents are advocating tirelessly to save their child’s life, or they’re grieving for their child in indescribable pain, they must challenge the fundamental belief that it’s OK to neglect themselves. Parents must invest in themselves so that the entire family will get the best that they can offer. How parents respond to the stressors and anxiety of this Duchenne world will lead them and their family through fear or celebration… for years. Their mental and physical health – and the health of their whole family – depends on it.
John W. James and Russell Friedman are the founders of The Grief Recovery Institute. They have defined grief as “the conflicting feelings caused by the end of – or change in – a familiar pattern of behaviors.”
In their most fundamental forms, grief and loss are all about the emotional response we have to change. Since grief is all about the response to and the perception of a change, loss and grief are highly individualized experiences for people. grief can be present for one person and not for another. If grief is present, it can be experienced on a spectrum from something minor to one of the most devastating losses that you can imagine. It can be experienced like a light shower on a summer afternoon or like a tornado or hurricane where you feel like there is nowhere to go to escape it.
Parents of children with Duchenne often experience a type of chronic stress resulting in allostatic load. Unfortunately, allostatic load can’t be managed by willpower alone.
Allostatic load can actually change the brain. Those physiological changes produce fewer and fewer neurotransmitters and serotonin, but it’s gradual. It sneaks up quietly and it’s quite easy to justify the depressive and anxious symptoms. After all, your child has a terminal illness. You’re not supposed to be happy all the time, right?
No, but as a parent, you do need to be able to function – and function well. You need to be able to make well thought out parenting and medical decisions. You also still need to model for all your children what you want them to know about adulthood.
