about the author:
Lindy Filis is the mother of an 11 year old son with Duchenne Muscular Dystrophy.
Anxiety and Depression in Parents of Children with Duchenne Muscular Dystrophy
Maybe the times are changing or maybe my child’s at the point in the disease where other parents talk more freely about these kinds of things, but I’ve been hearing more and more parents sharing something personal about themselves – something that pertains to me, too.
Many parents of children with Duchenne Muscular Dystrophy struggle with sub-clinical, or even clinical, anxiety and depression. Unfortunately, blame and stigma still persist around these mental health conditions despite evidence showing their physiological roots. But stigma or no stigma, parents still need help.
While there are several ways to cope with situations like this, I’d like to start a candid conversation about one in particular. It is a way that many parents of children with Duchenne have used to cope over the years, but rarely talk about.
I want to let the newly diagnosed – and any other unsuspecting parents of children with DMD – in on that little secret, too.
How Do They Do It?
By listening to our community chatter over the past couple years, I have learned that many other parents of children with DMD – myself included – talk to a therapist regularly and take antidepressants and/or anti-anxiety meds in order to function. Why?
You see, 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.
Just an Annual Screening
In my layperson’s opinion, every parent of a child with Duchenne Muscular Dystrophy – both mothers and fathers – should be screened annually by a psychologist and psychiatrist to monitor their mental health… simply an annual screening to get a professional’s input.
Here are common signs of depression and anxiety in the family caregivers of individuals with chronic illnesses. I encourage you to look it over and reflect a bit – both for you and your partner.
The journey doesn’t have to be THIS hard. The journey can get easier. It can even be fun.
Please let me know if you have any questions. I am happy to speak candidly about my own experience.
Thank you for sharing this, Lindy. Mental health is vital and too often overlooked.
Thank you for posting this! What symptoms were you experiencing and what helped you decide to go see a therapist? Thanks!
Hi! Sorry for the delay in replying… Any story. I knew I had OCD tendencies and some anxiety, but I actually didn’t go see a therapist for those reasons. Our son with Duchenne has ADHD and since we know that it can be partially genetic, both my husband and I saw a therapist to be screened just to make sure that our own mental health was in order… During my screening, she told me I definitely did not have ADHD, but I had high anxiety and I would likely be able to function better and manage my OCD symptoms with some meds. Sure enough, it definitely has helped and I’ve noticed an improvement in my relationships with my kids, my husband, and friends and family as well…
My therapist and I have talked about who’s on my son’s team with me. Being a DMD mom is way too much to do on my own.
Most cases you feel alot of pain when they pass on one after the other but there is nothing you can do until you blame your self most the time.How can one overcome this?