Your Wellbeing Matters

The terms mental health and self care are tossed around often, so let’s talk about what they mean and why they matter in ALS.

What is mental health anyways?

Mental health refers to an individual’s psychological, emotional and social wellbeing. Developing good mental health is important. Why? Because it can help us cope with stressors such as uncertainty and change. It helps support our ability to feel, express and manage a range of emotions. 

When you’re impacted by ALS, you’re often very familiar with living with uncertainty and change. For that reason, it is essential that you prioritize taking care of your mental health just as much as your physical or nutritional health. 

Pro tip: mental and physical health are connected, so ignoring one may inadvertently lead to problems with the other. 

How do you take care of your mental health? Enter self care. 

Self care is the process of taking care of yourself so that you can be physically, emotionally and psychologically healthy. It is not being selfish. When you or your loved one is living with ALS, it can feel like your world’s axis has shifted. It can be overwhelming and you may overlook your own needs. While understandable, doing so can lead to exhaustion, an inability to provide quality care and even burnout, which is an extreme form of exhaustion caused by prolonged stress and overwork. So take a few minutes, maybe even right this moment, to reflect on how you can take care of yourself. Here’s a resource that may help.

Asking for Help

Living with, or caring for someone living with ALS can be physically and emotionally taxing. It can sometimes feel like you’re carrying the weight of the world on your shoulders and that you’re alone in doing so. 

Pro tip #1: It’s okay to share this weight. Your family and friends likely want to help, but may not always know how. And sometimes they may make a mistake — gently and firmly set your boundaries, correct them and tell them how they can be helpful.

Pro tip #2: Don’t feel guilty for asking for help. Be clear when asking for what you need and know that asking for help is a superpower. Not sure what you may need help with? Here are a few ideas:

• Ask someone to organize a meal train. 
• Have someone help you with chores around the house — cutting grass, helping you fold laundry, etc. 
• Ask a friend to hang out with you or your loved one to watch a movie, go for a walk, enjoy a beverage or more.
• Ask someone to pick up your children and do playdates with them so both of you get time to yourselves. 
• Ask someone to do research on essential things you need — clinical trials, home healthcare agencies, insurance questions, equipment and more.

Experiencing Grief Throughout ALS

Grief is a very personal experience and can look different for each of us. We experience grief not just after a loss of life, but for losses throughout our lives. There are many different types of grief (click here to read more about grief), and it can be helpful to learn to identify a few. 

Anticipatory grief refers to grief over a loss that may happen in the future but has not happened yet. It can be related to many issues, from seemingly small things to more significant losses. Examples of anticipatory grief for a person living with ALS may include feeling a sense of loss over one day soon not being able to go out and get groceries on their own or likely being unable to give a toast by standing up and speaking at a family wedding. An example of anticipatory grief for a person caring for a loved one with ALS may include a significant change in lifestyle or having to imagine what their life may look like without their loved one.

While it’s impossible to put the grieving process into a neat package, there are recognized experiences felt by those faced with loss, known as the 6 Stages of Grief (Reference: David Kessler). Keep in mind — grief is complex and these stages can be experienced in any order, simultaneously, or not at all.

Your emotional, psychological and social wellbeing — your mental health — is important to take care of. We know it isn’t always easy, and sometimes it can feel easier to ignore than to address it. Know that you are not alone in feeling this way. 

Connect with others who can relate to you by clicking here to request a peer mentor or reach out to our ALS Support team (more about the team and program) by clicking here and speak with an ALS Support Specialist for support.