My principles for finding and giving support in the ALS community
What I've learned after nearly 8 years of involvement in ALS groups
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In the early, scary months after my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I started to realize that I had no idea what we were up against. At almost 50 years old, I’d heard of ALS only through the Ice Bucket Challenge and known only one person who had lived with it. I understood that beyond the information and resources provided by our ALS clinic, I would need connection and community to be a knowledgeable advocate and effective caregiver for Jeff.
In those early days, I craved real, unfiltered conversations with other families living with ALS. I wanted honest answers from people who were going through, or had gone through, their own experiences with the disease. I learned in just a few phone calls that the ALS community is small, interconnected, and full of people eager to help each other without even having met.
Those early conversations led me to enduring friendships and a few small ALS advocacy groups that I’m still involved with today. Being connected with those groups for insight and advice was a literal lifesaver when Jeff was living with ALS, and I’ve stayed on as a volunteer and advocate since he died in May 2020.
Engaging with ALS groups
Nearly eight years of involvement is a long time, and I’ve learned some important lessons about engaging with ALS groups. Here are the five principles I live by when I participate in the ALS community.
1. There’s a lid for every pot. Just like other community organizations, ALS groups are not one-size-fits-all, and that’s a great thing. There are dozens of ALS organizations that provide much-needed community and connection for ALS families. Some groups focus on research, others on family support or legislation. Joining groups that most closely matched my interests was encouraging and positive.
2. Understand that your engagement with ALS groups may change depending on your experience with the disease. I first encountered the ALS community as the wife of a newly diagnosed patient, then as a caregiver, then as a newly bereaved spouse. Today, nearly six years after losing Jeff, my role with ALS organizations is as a resource and a kind ear for those living with the disease and their caregivers. I learned to adapt my volunteerism over time as I transition through these roles.
3. If you’re volunteering, focus your time and energy. When I first began participating in the ALS community, I wanted to be all things to all people. I joined several committees and raised my hand for multiple projects, all of which I cared about. Unfortunately, I over-committed myself, and probably under-delivered. I learned from those experiences to narrow my focus and time to those areas where my skills and passions can truly make a difference. Today, I volunteer with three organizations, and I take on projects where I know I can contribute something useful to families.
4. Eliminate, or at least ignore, the noise. Whenever passionate, caring people are engaged in something as serious as ALS, there will be conflicting opinions. I quickly learned that even the ALS space is not immune to disagreements among members. I remind myself often that there’s one reason I’m in this fight, and that’s to support those currently living with ALS and their caregivers. In matters of disagreement, I ask myself if I have anything truly informed or important to contribute to the discussion, and if I don’t, I stay silent so that patient voices can be heard the loudest.
5. Check in with your emotions regularly. As a widow of nearly six years, I ask myself often what my motivations are for staying involved with ALS and what I am truly offering to the community. My personal mantra for volunteerism and advocacy is that no one is as important as the person living with the disease and their immediate family, and that’s who I am here for. It’s natural to occasionally feel overwhelmed. It’s even more natural to feel sadness and despair at times, like when our community loses a member, which happens far too often. At those times, I grieve, reflect, and may step back from volunteering for a brief time. When I return, I feel more passion and resolve for helping.
When I was a caregiver, I needed more than I could give. Today, I can give more than I need. I stay in the ALS fight to provide some small measure of support to the cause of ending ALS and caring for those living with it, and I understand that my effort is but a very small piece of a giant puzzle that needs thousands of people to be successful.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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