If you live with chronic pain, you have vast quantities of company. The estimates range from a few million to one-quarter of Americans in long-lasting pain. But you might never know it. Pain is not visible. There’s no 12-step group for it. And if you’re hurting for long, you’re likely to retreat into isolation rather than reach out to others.
Enter the US Pain Foundation (US as of only this January; it began as the CT Pain Foundation), a volunteer-based group founded by Paul Gileno, a former chef who had to find a new calling after a broken spine left him in constant agony. It runs support groups; does advocacy work; and tomorrow, beginning at noonish, is holding a free-lunch session at the Tufts School of Dental Medicine that features The INvisible Project, which documents in photographs and text the lives of people with chronic pain. (One example is here.)
The project’s aim is to educate others about the lives of people with pain, Paul said: “I think the biggest perception for people who don’t have chronic pain all the time is that if they don’t see it, then it’s almost like they don’t believe it after a while. In the beginning, if you get injured, people say, ‘Are you okay?’ But after a while, that chronic pain stays and it’s a year later and people tend to say, ‘Okay, when are you going to get better?’ Well, I wish I could get better right now but my pain is still there. We’re saying, ‘It’s real and we want you to know this is real.'”
Also, Paul said, “We want to show other people with pain that their new normal isn’t much different than everybody else’s who suffers with chronic pain. We want to show them that it’s okay if you’re home one day and not feeling well, it’s okay if this is all that you can do. We want to show them that this is the new normal and they’re not alone.”
The people featured in the project have diagnoses ranging from arthritis to fibromyalgia to lupus to obscure syndromes few have heard of, but they have two things in common: They’ve been chosen by fate to be physically tortured, and they soldier on. Continue reading