Pain is an everyday companion to fibromyalgia, and it can be a real … well … pain. And pain doesn’t limit its reach to just our physical being; it affects our entire life. A common result of living with pain is isolation.
Often, at first we isolate ourselves because we’re in so much pain. Sometimes, depression follows. Other times, our friends get tired of hearing “I’m just not up to it today,” and they quit calling. We can find ourselves feeling lonely even in the midst of our family because it seems that no one really understands how we feel. Isolation can be as damaging to our health as the physical pain. NPR recently published a story stating that isolation “can be fatal.”
So what can we do? Given physical limitations, one solution may be to find online connections. Let’s talk about two options.
The mission of the Pain Connection, a non-profit organization based in Maryland, is to empower people with chronic pain to improve their quality of life, decrease their sense of isolation, and take a more active role in their treatment. Pain Connection provides information, psychosocial support, coping skills and training to people with chronic pain, their families and health care providers.
The beginning of Pain Connection dates back to April 1999 with the start of a single chronic pain support group. Gwenn Herman started this group after being in a motor vehicle accident in 1995 that resulted in chronic pain. Ms. Herman felt compelled to reach out to others to provide support and treatment that she had found lacking during her own experience.
The Pain Community is also a non-profit organization whose mission is to build and strengthen an active, energized and diverse community of people affected by pain by providing a foundation of support where education, wellness information and advocacy are promoted. Starting in 2004 as the Women With Pain Coalition, The Pain Community offers a “community” for those living with pain – a place where, from your home, you can be educated, coached, and supported – a place where you can learn how to advocate for yourself and others as you actively participate in life.
When I was in college, I decided I didn’t want to wear rented shoes (Bowling Class), and there was an opening in an ROTC class. So discounting the fact that I really, really dislike guns and had never even touched one, not to mention that two of my greatest fears are heights and falling, I chose to take Marksmanship and Rappelling as one of my PE classes.
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I learned how to take apart and reassemble an M-16, but I never was able to put a bullet inside the big circles around the bullseye. The bullseye three panels down? Got that! Broad side of a barn? Not so much.
So let’s talk about rappelling. Remember my fears?
(hint: heights and falling) Well, the Webster definition of rappelling is “to move down a steep slope (as a cliff) by pushing the feet against its surface and sliding down a rope.” In our class, it wasn’t a cliff but instead a 40-foot tower. I found myself at the top of that tower with the expectation that I would – as we learned in class – create a seat with my rope, wrap it around my waist, and I would … JUMP OFF! And FALL 40 feet!
So I started crying. At which point, a classmate encouraged me not to be afraid. “Jesus is here with you right now.” My response to that sweet classmate? “Well, I really would like it better if I could reach out and feel His skin right now and He would jump for me!”
Sometimes, connecting with an online community might feel like taking that first step off the 40-foot tower. Similar to reaching out to someone (whose skin you can feel), you might be hesitant, might wonder what they will think of you, etc., etc. Seriously, if you are feeling isolated, take that first step. Reach out. Whether it’s to your neighbor or by checking out the Pain Connection or The Pain Community, take that first step. Really, that’s the hardest one.
You have to go to them sometimes.”
Winnie the Pooh
Cindy Leyland is ProHealth's Fibromyalgia Editor. Cindy also serves as the Director of Program Operations at the Center for Practical Bioethics and the PAINS Project Director. She lives in Kansas City with her husband, enjoys hiking, reading, volunteering with Synergy Services and being Gramma Cinny.