Born this Way by Steven Vaughn MD, PhD
It’s showtime for American medicine. Just like every other product that We the Consumer have the God-given right to purchase, healthcare is sold as a vital citizen’s right, by politicians and institutions, corporations and entities. What the principles of “healthcare” and “right” are not mentioned in the advertisement. Their meaning is up to the seller, of course.
There are many reasons that healthcare in America is plunging in quality. The most obvious reason has been known for a hundred years: healthcare is not a product, like tinned meat. It cannot be packaged and sold. It is not a thing.
It is a service that is measured in wisdom – the intuition of a fellow human being trained in the practice of medicine. The fetish to technologize has been uncomfortably carried on the back of medicine for many decades.
“The physician should not treat the disease but the patient who is suffering from it,” said Maimonides. There is yet to be an imaging technology that shows the person under treatment or a Dr. Watson that can see the human soul.
Diseases have been objectified, commoditized, and stuffed into a neat bag for Dr. Oz and friends to talk about between commercials. As soon as a disease is dragged into the public eye, a downpour of words follow – “sufferer” and “struggle,” and of course, “we can do more.” We have no intention of doing anything ourselves. Let something be done for us!
Diseases as crusades are frequently swept up by the self-obsessed and the famous as part of their self-aggrandizement.
Stefani Joanne Germanotta, known professionally as Lady Gaga, has bravely offered to talk all about herself and her suffering, to “raise awareness.” Awareness simply means recognition by a famous person.
“Lady Gaga will open up about fight with chronic illness in Netflix documentary,” offers a CNN headline. Lady Gaga breaks with her usual reticence and secretive behavior to offer deep insight into herself. I have never considered Stephanie to be the Emily Dickinson of popular culture, but she may be heard out in this endeavor.
Lady Gaga is hoping her forthcoming Netflix documentary will raise awareness of chronic illness, as she battles with fibromyalgia.
The singer on Tuesday opened up about her condition on social media, saying, “In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it.”
For those of us who have seen it, and cared for persons who suffer from it, it’s just a reminder to mention that fibromyalgia is a chronic musculoskeletal disease that causes widespread pain, with patients often experiencing extreme fatigue, sleep disturbances, depression, and headaches. It’s hard to diagnose, hard to treat; and many practitioners see it in the “grey zone” of syndromes that may or not be substantive.
In the first trailer for her documentary, titled “Five Foot Two,” the pop star was filmed at a doctor’s office, and at the Toronto Film Festival, spoke further about how the film explores her struggle.
“It’s hard,” Gaga reportedly said. “But it’s liberating, too.”
Other than a dandy argument for more abundant prescription medications for treating chronic pain, the documentary offers a very peculiar insight into illness and disease.
Stephanie’s fibromyalgia does not seem to be an obstacle to having seized the fickle attention of the entertainment public, and to engage in the endless activity, exercise and exhausting routine that represents the life of the entertainer in the public eye. As an entertainer, I don’t think much of her, but as an athlete, she belongs in a select class of the very fit.
My un-famous patients experience “extreme fatigue, sleep disturbances, depression, and headaches.” Unlike Stephanie, my un-famous patients are burdened by their disease. Not only do they not become rock stars; they struggle to live the daily routine of human life.
Are my patients of lower character and initiative? Are they lazy? Maybe persons such as Stephanie are just born this way. They are of championship breed and stock.
Perhaps Stephanie can give my patients some inspiration to shape up and try to feel better. But many people are skeptical about the reality of the diagnosis of fibromyalgia and myofascial pain syndromes. How will Stephanie’s documentary make people more likely to believe in its seriousness and damaging effect?
She offered in the documentary, “Having a frustrating day with chronic pain, but I find myself feeling so blessed to have such strong intelligent female doctors.”
A disease is not membership in a club, nor a hashtag. It is an impediment to wellness which inhibits persons from being the one whom they wish to grow into and be. Stephanie does not represent such an impediment, except perhaps flagrant narcissism. If that is a disease, she has done well in finding a home amongst other sufferers in the entertainment community, a Molokai for the self-impressed.
And if our society cared about “the patient who is suffering from disease,” that would be all of us. All human cultures since the paleolithic days noticed that each of us suffers, and each of us dies. The decision to use our human advantage, our intelligence, to interrupt the course of suffering, is one of the anchor points which made us human.
We could easily raise awareness of human suffering, but we choose not to. Prince Rogers Nelson, AKA the former entertainer known as Prince, and Michael Jackson are two recently deceased entertainers whom we ought to see as examples of the opiate crisis. But we won’t.
Both were men in their 50’s who had had very athletic performance careers. Both had suffered injuries which made it quite painful to perform on stage. It was the public, not the entertainers, who offered them enormous amounts of money to perform as though they were 20 years old. Perhaps Stephanie should think about how the years fly by. She is 31, and in twenty years, she will be Michael Jackson’s age of death. Injuries, sprains and chronic pounding take their toll on the human body. Perhaps in 20 years, Stephanie will be in financial need to do what she did in concert ten years ago.
Will her fans care if she needs fentanyl and benzodiazepines, Propofol and analgesics to drive a 50-year-old body to do what a 20-year-old body used to?
We all know that in LA and the trendy places, A-list entertainers are exempt from the DEA ban on controlled substances. They can get what they want. We need to ask ourselves, is this moral? Should we get our entertainment, in art or sports, from people who need drugs to do their job?
We don’t care, Stephanie. It may take you twenty years to realize that entertainers, like pills and shots, are packaged for delivery, and disposable. Fibromyalgia may not long be your friend. It should not be about you, but about the suffering of human beings.
“We each decide whether to make ourselves learned or ignorant, compassionate or cruel, generous or miserly. No one forces us. No one decides for us, no one drags us along one path or the other. We are responsible for what we are.” We are not born this way.
Very nicely written. When you say, “We each decide whether to make ourselves learned or ignorant, compassionate or cruel, generous or miserly. No one forces us. No one decides for us, no one drags us along one path or the other. We are responsible for what we are.” you are quoting Lady G? How much can we decide how to be when swimming in a pool of societal dictates and accepted norms? Even to act against these environmental influences, like dressing in butcher shop meats, is a performance and not a reality. As a culture, we still haven’t made up our minds whether people who suffer brought it upon themselves and whether we care about it at all, or would rather spend our money on things which seem they will bring us fleeting pleasure before they are put down for another gadget. We suffer the sufferers? Or ignore them? As the Age of the Selfie teaches us, It’s All About You! Who is this wretched sick person? Eeeew.
I don’t have time to watch this stuff but if she gets it across that narcs aren’t the answer for
fibro, she’ll have done a nice public service.
M J had psych problems and I’m sure they could have found a very good psychiatrist who could
have helped and done so in complete confidence.
Prince? For Chrissakes, he lived in Minnesota. I’m sure the experts on pain management at Mayo’s could have got him in there “in cognito” for state of the art care that could have given him relief obviating the need for the high dose narcs.
These people have the means for the best of care and I just shake my head when stuff like this happens.
We are so fortunate to live in an age where we can be reminded by celebrities how hard life can be. Thank-you Lady G for sharing!