What Volunteering Means to Me as a Person With a Chronic Illness


Last weekend, I made the six-hour trek down to Los Angeles to join my fellow complex regional pain syndrome (CRPS) warriors for the annual USC Quench the Fire Run, Walk, Roll. This event raises much needed awareness and funds for research, education, and treatment for CRPS — also known as reflex sympathetic dystrophy (RSD) — at the Pain Center at the Keck School of Medicine at USC.

As any spoonie can tell you, traveling is no easy task. Spending hours on a plane or in a car, sleeping in a hotel and missing many of the basic comforts of home are a recipe for a flare. Despite the challenges and increase in pain I always experience from attending this event, I force myself to push through and participate. 

Why would I do something that I know will likely cause a flare in my symptoms and pain? After all, I could still support the event by fundraising from home and not attending. 

Well, it’s simple. There’s something incredibly powerful about being present among others who share the same disease and challenges all gathering to raise awareness, money and help support others in our community.

It’s in moments like these that we are once again temporarily placed back in the driver’s seat. We have taken charge and are actively trying to change our prognosis and journey. We are standing up to the public and the medical system that many feel disregards us and reminding them that we are here and deserve and want better treatment. And for those who are often left feeling hopeless, powerless and vulnerable because of their diagnosis, this experience can be incredibly healing and empowering.

Since my diagnosis of CRPS/RSD over 12 years ago, I have made it a priority to always stay connected to the community by volunteering and helping others. For me, it’s been a critical component to how I manage this disease. My involvement level has waxed and waned, but I’ve always felt it was crucial to donate my time in some capacity, no matter how awful I was feeling. 

During these last several years I have helped facilitate support groups both online and off, participated in a variety of charity and awareness events, raised money for several nonprofits, met with those who were newly diagnosed to lend support and guidance, and am an admin with RSDCA. 

When helping others, it often feels that I am benefitting just as much from the work. There is no doubt in my mind that the powerful social connections made through volunteering have helped elevate my mood in some of my darkest times and have been one of the vital links that helped me persevere through the inevitable challenges that accompany the chronically ill.

Everyone has something unique to offer. While many of us mourn our “old life” and miss our work or hobbies, many fail to recognize that the skill set we posses is likely transferable and highly valued in the volunteer world. Our knowledge and talents can be applied to helping our community or applicable advocacy group or nonprofit.

Many times, we may feel depressed, stuck or unmotivated to help others. It is when we are feeling that way, often at our worst, that volunteering our time or talents can be the most helpful. Sometimes stepping away from our challenges and focusing on others can help us gain a different perspective on things.

As people who deal with serious health challenges and pain, we may often feel disconnected, powerless and unsatisfied with our lives. Helping others through advocacy and volunteer work is a wonderful way to inject joy, purpose and fulfillment back into your life. Use your unique gifts to make a positive change and improve the lives of all in your specific chronic illness community.

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Lead photo source: Thinkstock Images


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