The ALS Association

ALS Ice Bucket Challenge Progress

Grief after Diagnosis: Strategies for Coping

Learning that you have been diagnosed with ALS can trigger a host of complex emotions. Many people report feeling a sense of grief upon receiving the initial diagnosis. Some grieve over a sense of lost time, physical function, control or any number of other things that we too often take for granted in our daily lives.

But while grief is a common, normal response to diagnosis, it can be one of the most difficult emotions to cope with in a healthy manner.

Rebecca Axline, LCSW‐S, supervisory clinical social worker at Houston Methodist Neurological Institute, has counseled people living with chronic illnesses including ALS for more than 35 years. She emphasizes that while the experience of grief is different for everyone, there are some strategies that can help you navigate the grief you may feel, whether you’re newly diagnosed or have been living with ALS for years.

Give yourself permission

Tell yourself that it’s okay to grieve. “Grief is about change,” said Axline. “It’s healthy to allow yourself to be aware of what you feel has been changed or lost. As you experience grief and other emotions related to your diagnosis, find ways of expressing your emotions without hurting yourself or someone else.” Axline says that she encourages people to “develop the skills for experiencing emotions that work for them, and really lean into the feeling,” instead of trying to push it down or bottle it up.

Pay attention to wellness

Be sure to get adequate rest and nutrition, said Axline, but also keep in mind that wellness stretches beyond meeting your immediate physical needs. Take stock of how well you are attending to your emotional, intellectual, occupational and social needs, and seek support from family, friends or caregivers when you need it.

Consider professional help

This is especially important if your feelings of grief or loss become overwhelming. A licensed counselor can help you work through your emotions, connect you with resources for additional support should you need them, and empower you with strategies for coping with life after your diagnosis. If you would like to seek help, but are not sure where to start, contact your local ALS Association chapter or clinic for help.

Allow yourself to feel joy and seek purpose

Remember: ALS does not define you. Embrace your joyful moments. You have the power to shape your own life. Seek purpose, and accept the love and support of others. Some people find joy and purpose in helping others, or learning something new, or even simply spending time with friends and loved ones. Whatever gives you joy and purpose, do it – and give yourself permission to experience those good feelings, just as you gave yourself permission to “lean in” to any grief you may experience. Need some inspiration? Check out these stories of courage on The ALS Association’s website.

Find your support system

A supportive circle of friends and family, combined with a knowledgeable and experienced care team, can provide tremendous comfort. If you feel as though you could use additional support, there are many resources available for you. To get started, reach out to The ALS Association for information about chapters and clinics in your area. If you wish to learn from others living with ALS, you may want to seek support groups in your local area or in online forums like ALSforums.com, or on social media sites such as Facebook.

Additional resources

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