“We’re all chasing unicorns to find a diagnosis, a specialist, a treatment, anything that will relieve the pain.”
— Lisa S., from Virginia
Unicorns have become my go-to metaphor for the plight of someone with chronic pain. I am in that club. In addition to three autoimmune-related illnesses, I've had low back and sacroiliac joint problems that have wreaked havoc on my body for years. People in chronic pain want to get out of pain. So we seek solutions, trying a host of treatments, therapies, regimens, etc., many of which cost more money than we have. In my experience these remedies have more often than not led to a dead end, or at least a cul-de-sac. I've learned to manage my pain, but as of today I haven't completely gotten rid of it.
In a recent poll I took amongst a community of chronic pain sufferers, more than half had seen more than 10 doctors and practitioners to try and address their pain issues. Some had seen 20 or 30. After awhile you start wondering if you're looking for something that doesn't exist. Like unicorns.
One frustrating thing about chronic pain is that it's lonely. You don't want to be Debbie Downer to your family and friends, always talking about how difficult it is to function. At some point I just decided to quit trying to make people understand. They don't, and I've come to believe that it's more because they can't rather than they won't.
Another reason I don't talk about it much is because so often I come across well-meaning people who know they have my answer. It's a vitamin/supplement regimen, an exercise program, a dietary solution, an acupuncturist, a chiropractor, an alternative therapy or at least a very strong opinion about why I'm still in pain. The very worst kind are those that insinuate that I'm choosing to stay in pain because I'm not open to their ideas. And when I try to tell them that I’ve been to more than a dozen doctors, four chiropractors, three physical therapists, four acupuncturists, 30+ various massage therapists, six months of prolotherapy, two personal trainers, three oriental medicine clinics, two nutritionists, a yearlong stint with a Feldenkrais practitioner and five years of yoga, that often doesn't convince them. Their solution is the one. At some point you've gotta just quit following the Pied Pipers of the world, even if they do mean well.
I did have a really big breakthrough on my chronic pain earlier this year. Though I still very much questioned their existence, I went in search of unicorns again and actually found one. After 30 years of doctors telling me my low back pain wasn't coming from my sacroiliac joint, I found one that believed that it was. I had to go from Texas to Montana to find him, but he operated on me in January and that has alleviated about 90% of my chronic low back pain. (You can read about it here.) No, I'm not completely out of pain. But that one element, which was a biggie in my pain portfolio, is much better.
All that to say, I think our best shot at finding unicorns is to turn down the volume of everyone else's chatter and opinions, listen closely to ourselves, and choose to bet on what we know rather than what others say they know.