Volunteering with Fibromyalgia

Volunteering with Fibromyalgia

Christine Tender Points
After my career had been sidelined by fibromyalgia for more than a year, I began to consider ways I might be useful outside of the workforce. I naively believed that even though full-time employment was impossible, I easily could volunteer for a few hours a week. It didn’t take long to discover how wrong I was. Donating my skills and experience was much more difficult than I thought it would be.

Although my assistance was welcomed wherever I went, there always was a time commitment required. I shouldn’t have been surprised to learn that schedules are mandatory for any functioning organization — including all of the nonprofits I approached. I carefully explained to each volunteer director about fibromyalgia’s good days and bad days and not knowing in advance when either might occur. Each director said they would understand if I wasn’t able to come in when expected. However, my conscience wouldn’t allow me to promise something I was doubtful I could do. I agreed instead to come in when I was able. The result of my unreliability was being assigned menial, boring tasks. These jobs were unfulfilling and provided little motivation for me to return. I bounced from one volunteer position to another.

Then I remembered the local hospice founder who once spoke at my church. In addition to asking for funding, she had begged for volunteers. I wondered at that time what kind of person could do that kind of work. How difficult it must be to work at a place where patients didn’t recover! Although I admired people who could do it, l lacked the courage to do such a thing.

But my life had changed in drastic ways since that first introduction to Francis House. My husband had died very suddenly. Fibromyalgia had ended my career. My only child now lived in a city five hours away. Given the personal losses I’d experienced, working at a hospice sounded a lot less daunting. When I learned about an orientation for new volunteers, I decided to attend.

That decision changed my life. This organization was grateful to have me, no matter how undependable I was. They were accustomed to volunteers with physical challenges. After attending a lengthy training program, I agreed to work a four-hour weekly shift and added my name to the substitute list. I occasionally filled in for a person who couldn’t get there as planned, so I felt no guilt when asking someone to do the same for me.

Part of what made working there so special was the kindness of other volunteers who were willing to do this kind of work. Every day was different. Yes, some were sad, but most were joyful. Any resident’s simplest wish was cause for celebration. And celebrate we did! There were always cupcakes baking, hugs shared, songs sung.

Far from being morbid or depressing, the atmosphere there was peaceful and uplifting. Working there was the most gratifying experience of my life. The privilege of helping people make their final days the best days they could be is a gift I will treasure always.

So, here’s my advice if you’re considering volunteering. Be creative. Don’t limit yourself to places your talent or experience has taken you in the past. Consider new situations, things you’ve never done, things you’ve dreamed of doing. Don’t be afraid to take that first step. And don’t be discouraged if your first attempt isn’t successful. Consider it an opportunity to try something else. There is no shortage of places that need your help.

Be sure to be honest about your limitations. Any organization that’s worthy of your support will find ways to accommodate what you can do for them. And you’ll be amazed at how good you’ll feel about yourself for being a fibromyalgia volunteer.

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Note: Fibromyalgia 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 Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

8 comments

  1. Donna Zegalia says:

    I have tried different volunteer positions and several were too much for me. I am now a volunteer for a local hospital in the NODA (No one dies alone) program. It is uplifting, full of love, and leaves me with a sense of accomplishment. Sometimes you have to try a few different things before you get to a place where everything works out.

    • Christine Lynch says:

      Thanks for your comment, Donna. I hadn’t heard of NODA, but I will inquire at our local hospital. Sounds like a good replacement for the organization I left behind when I moved cross country.

    • Jeanne Ann says:

      I volunteered for NODA also. Once I remarried and relocated, the drive just became too long (about an hour each way) so I eventually had to quit. Since then I’ve been looking for other opportunities near where I live. However, since I now live in a much smaller community, I haven’t been able to find any volunteer positions that fit. I do continue to look. I also loved working with near death people and volunteered for Hospice also.

  2. Maureen says:

    I also went for volunteering with weekly commitments but finally stopped because I was trying (very slowly) to clean out to sell. And truthfully some days I really had to push myself and then to recover for the next week
    Still cleaning out, am not sure what is next but new ideas are so helpful.
    This is the first reference that I have come across. Thanks so much.

  3. StevefromMA says:

    Good for you folks thinking of volunteer service. I volunteer cooking at a soup kitchen one day a month, pretty challenging many times but the guests appreciate it.

  4. Cathy Mitchell says:

    Thank you so much for this article. Have the same situation with the same guilty feelings about my reliability. I am going to look into this as soon as I recover from my latest episode. I just could not think of where I could be useful with this damn disease!

  5. Tanya says:

    Thank you so much for your very inspiring story, it has given me a new perspective, one I didn’t think of. I’ve also had rubbish experiences with voluntary work after having to give up work, and life as I USED to know it. What you’ve said has resonated with me and I am going to look into this.

  6. Lindy Brockington says:

    Very timely article as I just emailed an animal shelter close to my house and asked about volunteering to spend time with the kitties. I’m not able to help clean or do physical labor, but if the kitties need some company, I am their girl!!

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