Pandemic Pitfalls: Avoiding the Compare-despair Trap
Remember those “100 Things to Do During a Pandemic” emails that arrived in our inboxes a while back? Well, a few days ago, I came across one, and while reading it, I felt the symptoms of “compare-despair” welling up in my mind.
Years ago, I might have followed the negativity and listened to the feelings of not accomplishing enough during these past weeks of nationwide pause. But living with ALS has taught me the value of not comparing what I do with the accomplishments of others. I have learned to appreciate everyone’s creative spirit and the ways they express it.
Have I reorganized my closet, learned a new language, or planted a vegetable garden? No, and I probably never will. Instead, I’ve been following my daily routines and doing simple things, including writing a weekly column and emailing friends. Compare-despair would have had me feeling inadequate. In its place, I know I’m practicing good self-care and helping to support my body’s health and immune system.
During this stressful situation, we all have different ways of coping. For some, cleaning and tackling home projects are a good way to diffuse their stress. Others may find comfort binge-watching favorite videos.
Super mask makers
I belong to a local fiber arts group that, like many clubs in our town, had to suspend our meetings due to the stay-at-home directives. A call went out that facial masks were needed by local organizations, and our group jumped into action. Over 40 sewers working from home produced colorful masks that were delivered to the volunteers at food banks, women’s shelters, and the fire department, as well as to neighbors and family members. One woman alone made over 300!
Did I make any masks? No, my ALS has limited my sewing skills. Did I feel inadequate because I couldn’t contribute or participate? No, I felt pride and shared in the celebration of our community spirit. No compare-despair here.
ALS patients do it, too
Comparing ourselves to others happens all the time. I’ve notice it even among ALS patients. We compare symptoms, medications, and what we’re still able to do or not able to do anymore. We compare, even though we know ALS differs from person to person. Symptoms differ, rate of progression varies, and even medications and treatments are individualized.
But we still do it: “What? You’ve had ALS for five years and are still walking, and I’m stuck in a power chair after only one year?”
Instead, we need to offer our empathy and support and cheer one another on. Just as there’s no one way to react during a pandemic, there’s no one way to live with ALS.
Together, we can survive this pandemic crisis and live well while living with ALS.
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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 Services, and are intended to spark discussion about issues pertaining to ALS.
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Jonathan
So true, we need to offer our empathy and support and cheer one another on. I read about others and there progression with the disease. The differences are apparent, but I prefer to view the similarities. WE are ALL suffering from this strange neuron killing disease, and can do little but hope, pray, and raise money for more clinical trials. We all function to some lesser degree than we used to. There are frustrations, anger and sadness that can encroach on us through our ALS experiences. I try and concentrate on the good things I can still do, try and reach out to help others (everyone, not just ALS sufferers). Helping others has a reverse effect in that it really helps me and my attitude/outlook on life.
Linda Tripp
This article was extremely helpful for me on several levels. It's been difficult to stay positive because I'm not cleaning closets, learning something new and have started feeling the compare=despair syndrome. I've felt the guilt for some time because I'm five years in and still walking. While I recognize the decline, I still struggle with the survivors' guilt. Appreciate that you helped me refocus my energy on the positives in my life. Thank you
Susan Gray
Dagmar, Jonathan and Linda,
I certainly can identify with Dagmar's article. It's really hard to not compare/despair at times. I feel guilt when I read about all the young people who have ALS. They have young families and are being robbed of perceived futures. I tell myself we never know what the future holds no matter what our station in life. I was diagnosed at 72 and thus have lived my life (until now) with not one health issue. I hate this disease but am thankful everyday that I was given my 72 healthy years. And I'm thankful for all the things I can still do despite ALS.
Diana Belland
Dagmar, thank you so much for attaching a label to what so many pALS, including myself, often feel. Your phrase, "compare-despair syndrome," captures it perfectly for me. It has taken me 13 months after diagnosis to recognize and accept that not only is ALS an extremely variable disease from patient to patient but that neurologists at highly respected institutions often hold differing opinions about ALS protocol and can disagree concerning the use of certain drugs and therapies. I've learned that it's inspiring and motivating to have ALS role models as long as I can accept that my body may have differing strengths and weaknesses, and that my symptoms may progress at a different rate.
I'm grateful to Jonathan, Linda and Susan for reminding me to focus on all the good in my life, on all things I can still do for myself, my family and my friends. Like Susan, I was diagnosed in my early seventies, and I'm very grateful for the years of excellent health and active living I enjoyed. My heart goes out to the many pAlS in their 20s, 30s or 40s whose dreams and plans have been thwarted. But research efforts such as the Healey ALS Platform trials can encourage us to hope that new drugs and therapies may be approved by the FDA in time for younger pALS to have the futures they've dreamed of.