In April I came across a Time magazine article that immediately made me think of persistent pain. This ground-breaking story described how a team of Harvard researchers worked like the dickens to capture an image of an honest to goodness black hole in space – so that once and for all we’d believe that this phenomena is indeed real. Wouldn’t it be a big bang if mankind applied the same resources to make visible the invisibility of pain?
Two things crossed my mind as I read this story. First, how their description of a black hole so closely mimics the high-impact pain experience – which in the article read as “a region of space that has a gravitational pull so powerful that nothing, including light, can escape.” This might as well have been written about my CRPS. This disease struck me down in the prime of my life, sucking away everything good with it – my dreams, my solid foundation of supportive family and friends, the career I lived for, and the family I would have had. In short, all things that produced light in my life.
And second, the basic human need to have physical evidence, to actually see something, in order to validate its existence. The great minds for decades have told us that there are incredible forces in space called black holes, but there was always doubt until these pictures were produced. Along that line, just think of the immeasurable level of suffering that’s happened forever simply because others cannot see our pain.
For me, I was disbelieved and abused by dozens of doctors before my CRPS diagnosis which took nearly 14 years. These men got away with dismissing me while saying that my complaints were all in my head because they couldn’t actually see or measure my pain. This invisibility caused me untold misery – and took away my chance for a cure and a happy life. I’m sure my experience applies to hundreds of millions of chronic pain sufferers around the world and throughout the ages.
Adding insult to injury while reading this article, I couldn’t help but be peeved that last year I was interviewed extensively for a Time story about the gender bias in pain care. The piece was killed, and I suspect that was in large part due to the fact that pain cannot be seen or proven – and is, in turn, doubted or not relevant. Indeed, not important enough for Time.
Biases happen in a vacuum of ignorance – and, in fact, I don’t believe I would ever have been disbelieved by a doctor if my pain could have been seen. And these implicit or explicit biases don’t just happen to women. They also happen to people of color, low-income individuals, the under-educated and those of different ethnic backgrounds. To ever equalize and improve pain care, it’s critical that we see and, as a result believe, the root of the pain problem.
The article featured one of the scientific researchers, Dr. Katie Bouman, because she’s a woman – and the overwhelming majority in that field are men. Further, Katie is quoted as saying that her passion is “coming up with ways to see or measure things that are invisible.” Kudos to Dr. Bouman for being a trailblazer by making this remarkable piece of the universe nail-down valid.
But I suspect black holes only have real meaning, real significance to a tiny sliver of humanity. I submit that if Katie wants to use her passion and skills in an earth-shattering positive way, she and her team focus on visualizing pain. If she can do that, then millions and millions of lives would instantly improve from today to forever. From her moment of discovery on, we with pain would be believed, treated with dignity and respect, and, yes, many of us would be cured.
At For Grace I hear from women in pain most every day, women who feel invisible due to their galaxy size losses. Yes, many fall into their own black hole of pain – one where isolation, depression, feelings of uselessness, endless days of self-medicating fog reign supreme, and too often lead to suicide.
Ms. Bouman, if this post somehow, someway makes it to your computer screen, I implore you to drop your voyage to the deep recesses of space, and come back home to your brothers and sisters here on earth who are suffering immeasurably. You may very well have the power to change the course of pain – and your contribution would be out of this world.