In recognition of National Wellness Month, we are exploring the many facets of wellness and the ALS community, shining a spotlight on the act of practicing healthy habits to attain better physical and mental health outcomes.
The urge to support, or be supported, is often accentuated at times of great challenge, or uncertainty. As anyone living with ALS or being an ALS caregiver knows, this disease can bring plenty of both. That’s why The ALS Association provides support groups in every state.
While ALS support groups address the unique challenges the disease presents, they follow best practices, joining people together who are dealing with similar difficult circumstances. These groups provide an opportunity for people to share personal experiences and feelings, coping strategies, and firsthand information about living with ALS in a safe “place” where members can get advice that’s practical, constructive, and helpful.
“Being in this group has helped me to believe I can do this,” says Karen who attends an ALS caregiver support group. “One of my biggest fears is whether I’ll have the physical strength and courage for the role of caregiver. Every month I see people who are doing that successfully. They’re exhausted, maybe don’t even have time to brush their own teeth, yet they are making it. I can too.”
For some, the decision to join a group can be a difficult one. There can be fears of sharing struggles or failures with others, and of being exposed to others' pain and frustrations when the challenges you are facing already seem so daunting. However, in most cases, these fears prove to be unfounded once the participant sees that others are facing similar challenges or emotions, and instead, they feel a sense of community and fellowship. In many cases, the simple act of sharing your own experiences can be extremely cathartic.
“Try it!” says Karen. “There is no pressure to share if you don’t want to. The group is a great resource for first-hand information on living with ALS. You’ll meet people who know exactly what you are experiencing. Knowledge is power.” Sometimes just the knowledge that others are experiencing and feeling the same sorts of things as you can be a form of support in and of itself.
“Immense emotional and psychological comfort comes from just knowing the other participants ‘get it,’” says Melinda Osborn (LCPC, NCC), a facilitator of multiple ALS support groups. “When members come to group, and they create this positive interaction and they are able to intensify a positive belief ‘I can do this,’ that experience of group carries with them. They recall what was shared and talked about and it truly helps them remain in a positive frame of mind when things might get a little harder sometimes.”
And while many people join a group to find support, they often find they gain strength and confidence by offering support to others that need it as well.
“Participants coming to group might feel humbled, like they don’t have anything to add and they’re just there to take advice,” says Osborn. “But each family has a unique experience. By sharing their experience they don’t realize the level of comfort and support they’re gifting another participant. By sharing their own stories and struggles and asking questions others are probably wondering, it shifts the perceptions of others. Hearing similarities from others lets them know they’re not alone in their, sometimes overwhelming, thoughts and feelings.” For people facing an ALS diagnosis, being part of an ALS-specific group can often offer a form of support they cannot find elsewhere.
“ALS caregivers play more of a medical and daily living support role, so we do talk a lot about medical systems, assistive technologies, and equipment,” says Osborn. “I’ve known of (support group members) wanting to find a local group to join, and they shared with me they couldn’t relate to the other members, they weren’t noticing any similarities in those participants’ stories. Given the designation of ALS being a rare disease, I suppose you could call our caregivers a rare type too.”
“Mental health professionals agree, group work can be more effective than individual counseling. If (you are) thinking of joining a group, (you) should be prepared to participate and share,” Osborn shared. “Because of the nature of an open attendance monthly group, there may be an established dynamic or bond among participants that are already attending. But please know they want diverse voices and new members, even if you feel awkward in the beginning.”
While everyone’s journey with ALS is different, it is important to remember you are not alone. “Because of the speed at which some of the peoples’ ALS is progressing, I know the group will be changing,” says Karen. “But there will always be something new to learn as people join this group.”
If you are interested in finding out more about ALS support groups, contact your local ALS Association chapter.