When I began my journey in the world of fibromyalgia, I had nobody. True, I had my husband, family, and supportive friends, but I felt like I didn’t have many who knew exactly what I was going through. I felt so alone in my pervasive pain and persistent exhaustion. I began to search Twitter for people like me:
- People who had spent several years trying to figure out what was wrong with their bodies
- People who had been dismissed as crazy, a hypochondriac, attention-seeking, and dramatic by doctors, family, friends, and co-workers
- People who had no idea what to do now that they did have a diagnosis because the medical community had little to no idea as well
- People who knew what it was like to be consumed by grief, fear, and hopelessness because their disease was forever
- People who decided that this was bullshit, and giving up was not an option
And I found them. I found people like Julie Ryan, who collects and shares medical information/research so that people in our community have avenues from which to tackle their illnesses. I found people like Chris Dean, who made me snort with laughter in spite chronic pain. I found people like Trisha Pearson, and identified with her everyday struggles. I found Miss Treated, which gives women opportunities to share the misogyny they experience with doctors, and Dr. Ginevra Liptan, whose goal is to bridge the divide between fibromyalgia and the medical world.
All of these finds were and are fantastic, (and there are so many more out there) but I needed something more. I needed a community of people with whom I engaged on a more personal level. I needed to be able to whine about not being able to stand long enough to do the dishes. I needed to be able to ask about different medicines and procedures, how people reacted with them, and if my experiences with them were common. I needed to feel like my brothers and sisters with pained arms cared about me and my whole life, not just the disease. That’s when I found Elizabeth Christy, whose Parents with Pain Facebook group changed my life.
In PWP, people follow up with one another, asking how their appointments went or if they’re feeling better after a flare. We lift one another up, but keep it real at the same time. No one is shamed into being more positive; quite the opposite, in fact. Whenever someone apologizes for “whining” or venting, we quickly remind them that PWP is a safe space, intended precisely for catharsis. No one is informed that their pain is for a reason and that god won’t give you more than you can handle. No one is badgered into a specific medical or nutritional regimen. Plenty of people in PWP are gluten-free or paleo or juicing, and will share their experiences with those ways of life. Rarely does sharing these medical and life choices/treatments result in a war of words. (Seriously, I can count the number of times on one hand when there have been tense exchanges. No one has ever cursed anyone out or flamed out calling someone Hitler.) We’ve also seemed to avoid the fatal flaw of many support groups; there isn’t an echo chamber of learned helplessness and fatalism. We rejoice with each other when something wonderful happens, like finding a doctor who takes you seriously. We empathize when members are feeling defeated and depressed. We offer to cut a bitch when someone has been a dick toward one of our members. Seriously, someone offered to phonebomb a receptionist who made fun of me today because I couldn’t find a word during a fibro fog moment.
I feel extremely lucky to have such an extensive support network. As the writer of the Christian creation poem wrote: It is not good for man to live alone. We with chronic pain and fatigue tend to be isolated from the world because of our condition. And once we are in the world, we find that very few, as sympathetic as they may be, have no idea what we’re going through. I encourage you to join us or find a group for support. The load is lighter with many hands to carry it.