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 (more on that in a different article.) Together, as a community, we can make a difference in the lives of our Duchenne families.
While the stressors explored below are by no means comprehensive, they definitely help to illustrate the cycle of anxiety, depression and the extreme relationship stressors that most parents of children with Duchenne experience on a daily basis.
Anxiety and Depression
So, why are the rates of anxiety and depression higher in our parent population?
The higher rate of anxiety and depression definitely isn’t because the parents are too sensitive, weak, or exaggerating their problems. Quite the opposite.
Those mental health challenges frequently come from stressful situations that dedicated, involved, loving parents continue to address head on, no matter how extreme or how often.
But at a cost.
Unfortunately, those chronic stressful situations have the potential to actually change brain physiology. When that happens, chronic anxiety and depression can emerge – even if parents weren’t prone to them before. And it’s important to know the signs.
Rose Reif is a Licensed Clinical Mental Health Counselor, a Certified Rehabilitation Counselor, and a Qualified Developmental Disability and Mental Health Professional. In this short clip, she explains what anxiety and depression represent at their most fundamental levels and what their signs are. She also addresses when it’s time to consider taking medication, starting therapy or joining peer support groups.
Allostatic Load
In simple terms, allostatic load boils down to chronic stressors and physiological adaptation. Allostatic load appears when chronic or extreme stressors (and any unhealthy coping techniques) collectively overwhelm the body’s ability to recover from the stress.
Allostatic load can actually change the way the brain functions. Those physiological changes produce fewer and fewer neurotransmitters and serotonin, which are important feel-good and anti-anxiety chemicals.
This 2021 article entitled Allostatic Load and Its Impact on Health: A Systematic Review provides more details about the situations that can lead to allostatic load:
- (a) exposure to frequent stressors that may determine a status of chronic stress and repeated physiological arousal;
- (b) lack of adaptation to repeated stressors;
- (c) inability to shut off the stress response after a stressor is terminated;
- (d) allostatic response not sufficient to deal with the stressor.
Between the terminal diagnosis, extensive parenting responsibilities, loss of social support, lack of sleep, changing relationship dynamics, medical emergencies and behavioral challenges, the chronic stressors are very real and quite overwhelming as a parent of a child with Duchenne Muscular Dystrophy.
Disease Management
Undoubtedly, the responsibilities of parents of children with Duchenne can be daunting.
Parents must learn an entire rare medical disease with medical terminology…in their spare time. They must tackle legal projects, insurance battles, advocate at the school, in the medical community and in their own social circle. Many parents also experience significant changes at work. They juggle all this while managing their own grief – and the grief of the whole family.
And yet, somehow, it’s so much more than this. Rose Reif explains in more detail how the parenting responsibilities of a child with a disability – like Duchenne – differs vastly from the parenting responsibilities of a neurotypical child.
Family Dynamics
It’s so true that the diagnosis of Duchenne goes beyond the individual. Indeed, it permeates the entire nuclear family in a multitude of ways.
To begin, kids with Duchenne often have explosive behaviors due to the physiological instability created by the lack of dystrophin. These unexpected explosive behaviors affect everyone living in the household.
Next, the responsibilities associated with caring for the child with Duchenne are extensive and time consuming. Since there are limited hours in the day, parents often have to make very challenging decisions between daily medical care and meeting the needs of the rest of the family.
For those of our mothers who are manifesting carriers, family dynamics can get even trickier. Just as individuals with Duchenne have an agitated nervous system, many of our carrier moms have similar stress patterns. Mother and child can easily escalate the other’s stress levels, raising stress levels in the household even higher.
Marital Dynamics
And then we add martial stress to the mix.
The expectations, hopes, grief and overwhelming responsibilities can easily alienate partners from each other – immediately upon diagnosis and also slowly throughout the years. Unfortunately, any undiagnosed anxiety or depression – in one or both partners – only complicates matters further.
For parents who are married or in a committed relationship, the relationship often endures significant struggles. It sometimes even resembles the relationship of roommates rather than romantic partners. Overcoming these challenges often takes purposeful and creative thinking – and two dedicated partners – to keep that passion alive.
In many ways, it’s both easier and harder for those who are parenting solo. Decisions can be made unilaterally, but decisions can also be intimidating. Friends become essential, but friends also have their own lives to live. Just about everything rests on the solo parent’s shoulders alone.
Extended Family and Friend Dynamics
Relationships with extended family and friends also often struggle and parents of children with Duchenne frequently report feelings of isolation and lack of support. Somehow, the relationships with extended family and close friends seem amongst the trickiest to navigate… maybe because there’s so much left unsaid.
Upon disclosing the diagnosis, Duchenne families often experience a rush of sympathy, support and help from extended family and friends. Honestly, most Duchenne families need that initial flood of support perpetually, but it can’t last forever. People have their own lives to get back to. However understandable and logical it all is, the wane of that rallying cry can still cut deeply.
For those friends and extended family who are able to help past the initial rush, they may not know how to help, may become frustrated when offers of help are turned down, or may even be waiting for the Duchenne family to reach out first.
Unfortunately, the parents of children with Duchenne are often so consumed with responsibilities that they don’t have the time, energy or the brainpower to ask for help or even to know what form the help needs to take.
The parents may also fear leaving their child with extended family and friends who don’t understand what each and every day involves. For example, things that most people take for granted (bathing, toileting, feeding, transferring from one seat to the next, emotional predictably) are challenging in the best of circumstances and can actually turn quickly into a Duchenne emergency. It can literally be life threatening for parents to leave their child in the care of someone who isn’t familiar with the daily care or signs of impending emergencies.
Even if all these challenges can be sorted out, relationships may still get bruised within the extended family. Relationships can get complicated as extended family navigates their own grief and as they try to figure out what to say and even how to act.
Unfortunately, families with carriers of Duchenne can have dynamics that are even trickier. While extended family likely understands Duchenne care and emergencies, they may have Duchenne responsibilities with their own children. And carrier grandmothers may struggle with emotional availability as they sort through feelings of guilt, responsibility and regret.
And so the cycle of anxiety and depression continues, while feelings of isolation increase, responsibilities and need for help continues to grow, and the disease progresses.
Until somebody breaks the cycle…
More to Consider…
- 100+ Ways to Help the Duchenne Family
- Challenging Duchenne Behaviors
- Married with Special-Needs Children