An ALS diagnosis can trigger many complex emotions, including mourning for lost time, physical function and control. Rebecca Axline, an experienced clinical social worker, emphasizes that although grief is different for everyone, there are strategies for dealing with it, regardless of whether you have just been diagnosed or have been living with ALS for years.
Give yourself permission to grieve
Tell yourself it’s okay to grieve. “Grieving is about change,” says Axline. “It’s healthy to allow yourself to be aware of what you feel has about what is changed or lost. If you’re experiencing sadness and other emotions related to your diagnosis, find ways to express your emotions without harming yourself or others.” Axline encourages people to “develop skills to experience emotions in healthy ways,” rather than suppressing or bottling them up.
Pay attention to well-being, both physical and mental.
Get enough rest and adjusted diet, Axline advises, but remember that well-being goes beyond just your physical needs. Evaluate how well you take care of your emotional, intellectual and social needs, and seek support from family, friends or caregivers when you need it.
Seek professional help
This is especially important when your feelings of grief or loss become overwhelming. A licensed therapist can help you process your emotions, connect you with additional support resources if needed and guide you in developing strategies after your diagnosis.
Allow yourself to feel joy and seek a purpose.
Remember: ALS does not define you. Embrace the joyful moments. You have the power to lead your own life. Find purpose and accept the love and support of others. Some people find joy and purpose in helping others, learning something new, or spending time with friends and loved ones. Whatever gives you joy and purpose, do it – and give yourself permission to experience these good feelings, just as you allowed yourself to feel sadness.
Find your own support system
A supportive circle of friends and family, combined with an informed and experienced care team, can provide tremendous comfort. If you need additional support, there are many resources available. You can also contact us, the ALS Liga, with questions and concerns.