Life is hard, and parts of life are really, really tough. I can’t imagine that one person reading this blog has not had episodes of sadness and despair. Thankfully, these feelings usually pass, especially with the love and support of people in our lives who are able to recognize the signs and help us to come back into the light.
During the dark periods, some may have thought about finding relief by ending their life. Throughout history, suicide has been romanticized. Romeo and Juliet, Cleopatra and Mark Anthony, and now “13 Reasons Why” (well, maybe 13 Reason Why doesn’t exactly romanticize suicide, but it does make it seem pretty easy and a way to get back at people). “How To” videos make it look easy and peaceful. But we know that suicide, and depression, are not romantic. They are desperately painful states of helplessness and hopelessness. For parents, the thought that their child, their heart, would consider ending their life is terrifying.
Recently, there has been an increase in posts from adolescents and young adults with Duchenne who have contemplated that the world, and their families’ lives might be easier lives if they were gone. And we know suicide can be ‘contagious.’
For this reason, we want to remind everyone of the signs that there is a problem, when to get help, how to get help, and how to recognize an emergency. I have asked Molly Colvin, PhD, a neuropsychologist at Massachusetts General Hospital to help.
Children and teens with Duchenne, as well as their families, draw upon tremendous strength to cope with this life limiting diagnosis. It is normal to occasionally feel that it is too much to manage. It’s also important to recognize when worries or feelings of sadness are having a real impact on one’s ability to live life to the fullest.
At those times, it’s important to know that help is out there.
Knowing the Signs
It is very important that centers/clinics caring for families living with Duchenne ask questions around depression and suicidality. Too often, these issues are forgotten in the myriad of medical testing. There are many in the community who are dealing with these, and other psychosocial issues. Make sure that your neuromuscular team has someone who is asking questions of parents and their families around these issues at every age, and at every visit.
Normal Worries and Sadness
There is, of course, normal anxiety and sadness that happens in all in children and teens, including those with Duchenne are no exception. Some examples of normal episodes might include:
Warning Signs that Help is Warranted
Parents and teens/young adults should pay attention to recognize the need for help. When anxiety or sadness might feel too overwhelming, warning signs might include:
When to Seek Immediate Help
If your child exhibits any of the following warning signs, get help immediately. If you are questioning the need to get help, it is always better to be safe than sorry.
How to Get Help
There are emergency mental health systems in place nationally, regionally, and locally. If you need help urgently, then we hope the resources below will be helpful. Social workers in your area should also be able to direct you to available resources for less urgent situations.
While depression and anxiety are not pleasant topics, the first step to healing is to recognize and seek help when it is needed. There should be no shame or embarrassment in seeking help for you or your loved one as you navigate this challenging Duchenne journey.
We hope that this post will give parents and children/teens/young adults some information and resources that are helpful.
Please remember – Every life is precious.
National Resources and Hotlines