When patients involved in advocacy are ready to step away, doing so may be more complicated than just saying, No more.
Patients often first get involved in advocacy because of benefits, such as:
Giving meaning and purpose to the illness.
Regaining a sense of control.
Combatting loneliness.
Fostering hope.
Making connections that enhance medical care.
For me, it did all that—and more—throughout the 20 years I served as captain of Wendy’s Eagles. My reasons for me to continue participating this year were as strong as ever, including:
The need was great for increased awareness and more funds for research.
Fundraising was a meaningful way to show gratitude for my medical care and good fortune, and to honor the memories of the friends I’ve lost.
Yet I chose to hang up my wings after the walk. Why? My circumstances had changed, making the reasons to step away stronger.
For patient advocates who feel torn (as I did!), remember: There’s no “right” or “wrong”—just a best decision for you. Assess whether continued involvement is overall making your life better.
If feeling doubt and/or guilt about “abandoning” the cause, remember:
Just because you can does not mean you must.
You can resume in the future if you want to.
A meaningful way to show gratitude and to honor the memories of friends is by living life the best you can now, which may include letting go of advocacy.
I was concluding my active involvement, not abandoning the cause. In retirement from Wendy’s Eagles, I will continue to advocate for others, if only by reminding everyone that Healthy Survivorship is personal and always a work in progress.
Postscript: At the event, The Lymphoma Research Foundation honored my advocacy work with the 2024 Champion of Hope Award. Click here for my acceptance speech.
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