One of the hardest things about being a sibling of an individual with Duchenne is when no one talks about Duchenne. Siblings are relatively isolated in their access to information. Many parents avoid the topic, not knowing what to say or thinking they are “sparing” the other children from grief and pain.
The problem with that strategy is that kids constantly try to make sense of their surroundings and their own experiences. If they don’t have the information they need, they will likely create a story as well as they can with their limited information. If they are savvy enough to consult the internet, then they may encounter inaccurate information prompting unnecessary worry and anxiety.
Their Place in the Family
It can be rather confusing for a child to sort out his or her place in the Duchenne family. Parents’ actions may contradict their words, the time that each parent spends with each child is clearly skewed, and somehow the emergencies of the siblings are never quite as important as the emergencies of the child with Duchenne.
It’s an incredibly hard truth that the needs of siblings often come second to the needs of the child with Duchenne. Life threatening situations simply take priority over “typical” child drama, and unfortunately, those life-threatening situations may become frequent with Duchenne.
Siblings are also separated from their family more often than their siblings with Duchenne. The sibling is often excluded from the annual or bi-annual clinical appointments and also excluded from the travel for clinical trials. Not only is the separation from family confusing enough for the child, but their absence from appointments again excludes them from an opportunity to gain information about the situation.
“The Unaffected Ones”
The siblings of individuals with Duchenne are often called “the unaffected ones” by the medical community. If only that was true. Living life as someone with a sibling with Duchenne definitely affects mental health, emotional health, social health, and yes – sometimes – even physical health.
Between the terminal diagnosis, extensive responsibilities, challenges 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 sibling of a child with Duchenne Muscular Dystrophy.
These are nowhere near all the stressors that siblings with Duchenne experience. In fact, there are so many stressors that the experience of living with a sibling with Duchenne can affect mental health. The allostatic load of repeated spikes of stress can actually change their brain chemistry, setting them up for a greater likelihood of anxiety and depression.
True, sisters can easily be carriers – and even manifesting carriers – of Duchenne Muscular Dystrophy. Unfortunately, not every family has the luxury of determining the carrier status of the daughters, and there are many families who simply choose to not know. In the end, even if a sibling does escape the genetic lottery, the experience alone of being a sibling shows that they are still clearly affected by Duchenne.