Control and Duchenne
The stressors and responsibilities of parents of children with Duchenne Muscular Dystrophy are multiple and absolutely enormous.
Unfortunately, few of those stressors are actually going to change. From challenging childhood behaviors to lack of sleep, financial strain, very few family members and friends really “getting it,” an uncooperative school – and a thousand other obstacles that tend to emerge – there are just some things that are part and parcel with Duchenne.
But if these stressors are common within the DMD community, then why do some families seem to thrive, and some seem to struggle endlessly? Why do some families celebrate each day and others agony about the future? Why do some bloom and others wilt?
The answer begins with the parents, their mental health, and their physical health.
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.
Stress
Just about any mom or dad of a child with Duchenne can agree there is a lot of stress to deal with as the parents. But the question is, what exactly is stress?
Stress is typically a response to an external stimulus – like the school calling for the umpteenth time, or your employer refusing to give you more time off for those medical appointments. When humans experience stress, their bodies release stress hormones which kick them into a flight, fight or freeze state. That stress can be positive (finally getting the Special Needs Trust set up) or negative (losing sleep). Either way, this flight, fight or freeze feeling goes away once the external situation is resolved.
Occasional stress is completely normal and to be expected.
Chronic stress, however – like that which a parent of a child with Duchenne experiences – is not typical and studies clearly show it can cause physical harm. Excessive worry, uneasiness, tension, headaches, body pain, high blood pressure, and loss of sleep are all common experiences for parents of this population.
But the effects of the stress rarely stop there.
Anxiety
As another response to the stress in their lives, parents oftentimes experience an increased feeling of anxiety.
While stress has its roots in the external, anxiety is the internal reaction to the external stress. It tends to involve dread or persistent apprehension that doesn’t go away and interferes with daily functioning and life. Anxiety stays, even if the stressor is resolved.
Anxiety, like stress, ignites a barrage of discomfort for the mind and body. Excessive worry, uneasiness, tension, headaches, body pain, high blood pressure, and loss of sleep creep into parents’ lives not only with stress, but with anxiety, too.
As a response, many parents attempt to gain control of their external life to create a sense of internal safety. However, attempting to control the environment – or other people – only creates temporary relief, if that.
In many ways, the attempts to control the chaotic Duchenne life are at the root of the anxiety, not the remedy for it. Anxiety is often indicative of misplaced attempts of control. Ultimately, the only thing a parent can really control is him or herself.
While the stress of parenting a child with Duchenne Muscular Dystrophy won’t really go away, parents can make choices to reduce their anxiety. They can make choices to focus their efforts of change on things they can actually control. For example:
- Although parents cannot control how others treat them, parents can control their own expectations of other people or situations and how they respond to them.
- Although parents cannot choose their emotional responses, they can choose whether to regulate, self-soothe and label those emotions.
- Although parents cannot control the results of their efforts, parents can control how they cope with stress and how hard they work.
- Although parents cannot control what other people think of them, parents can control how they speak to themselves.
- Although parents cannot control past events, parents can control their present choices.
- Although parents cannot control how others behave, parents can control the boundaries they create, communicate and respect.
Acceptance
Discussions about stress and anxiety introduces yet another topic that many parents of children with Duchenne may struggle with: acceptance. Acceptance is the willingness to experience psychological events (thoughts, feelings, memories) without avoiding them or allowing them to unduly influence behavior.
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.
Some of the best ways to accomplish these goals is through cognitive behavioral therapy and, when needed, psychiatry.
But it has to start with the parents. It starts with the parents, their mental and physical health, and their willingness to challenge the fundamental belief that they can neglect themselves.
Thank you so much to our co-authors Dr. Natalie Truba, psychologist and Dr. Nadine Schwartz, psychiatrist of Nationwide Children’s Hospital.
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