While Little Monsters everywhere have been lamenting Lady Gaga’s recent tweet announcing the postponement of the European leg of her Joanne World Tour, I have been rejoicing. Let me tell you why. The aforementioned Twitter bomb arrived with a tandem statement that Germanotta has been diagnosed with fibromyalgia, a chronic illness characterized by widespread pain, fatigue, mental fog, and many other debilitating symptoms for which there is currently no proven cure. I happen to be one of the lucky ladies who shares Gaga’s diagnosis and all the fun that comes along with it, and Lady G’s news gives me life because when superstars speak, we listen. And in true superstar style, Gaga has not only made an announcement, she has made a documentary about her experience. Gaga: Five Foot Two, which begins airing on Netflix today, captures Germanotta’s most intimate moments as she records her latest album while coping with recurrent pain, personal trauma, and the strain of being ever in the spotlight. It is a cinematic pop angel come down from on high with abundant lessons for all—those suffering from fibromyalgia and other still-not-understood illnesses and everyone else who shares a world with us.
I first heard the word fibromyalgia when I was in my early 20s. For several years, I had been suffering with various symptoms with no known cause—migraines, heart palpitations, stomach issues, and fatigue. One evening, I had gone out shopping with my mother when I began to feel pain in my knees. The pain grew and grew until it was painful to have even my pants touching my legs. The next morning I woke up with a golf ball–size swelling on my hand between forefinger and thumb and a rash over most of my body. The ER nurses and doctors were stumped. As various parts of my body swelled up day after day and pain traveled around my body, I was finally sent to the director of the hospital—think the Hugh Laurie figure of this particular establishment. While there, I pointed out a strange spot on my lower back, a place where it felt like a bruise should be but there was none. The doctor recognized it immediately as one of the tender points characteristic of fibromyalgia and confirmed his suspicions by finding the other spots in their textbook locations. And so one mystery illness serendipitously led to the diagnosis of another. Kind of.
At that time at the turn of the millennium, before autoimmune diseases and other chronic illnesses had been recognized as epidemic, some doctors believed in fibromyalgia, others didn’t, and some just weren’t sure. Things that are mysterious, that challenge our notion of what we think we know, can be easier to ignore than to try to understand. I can still recall a victorious moment years later when a med student I was dating mentioned fibromyalgia casually and told me that it was now commonly included in medical textbooks. I was even more surprised years later to see it listed on hospital websites—there were even departments devoted to it! Progress takes time.
Fibromyalgia is hard to diagnose. It’s like a really long episode of House. The show has been discontinued, but your episode is still running. There is no single clinical test that can prove whether or not someone has fibromyalgia. This can make it hard for others to take the condition seriously. On the same day that Gaga’s tweet appeared online, for instance, a Facebook friend of mine who had also seen it posted a question: “But does fibromyalgia really exist?” If even a public superstar can elicit this response, you can imagine the responses those suffering from the condition get. You are sick, sick, sick, but “you don’t look sick,” and so you begin to ask yourself the age-old question: How do you prove what can’t be seen? People can and will ask, “Is it really there? Are you sure? How do you know?” but this conversation will not benefit you in any way.
A diagnosis of fibromyalgia typically consists of a long (and frustrating) process of ruling others things out. Your persistence in seeking answers is key. The cause is unknown, which of course makes everything much trickier. It has been suggested that the disease could be caused by everything from genetic factors, infections, and illnesses to trauma and/or the kitchen sink. To complicate things further, according to the National Institutes of Health, 80 to 90 percent of those affected are women, and since it has traditionally been difficult for women to be heard in our culture, women with this illness may have to speak a little louder in order to really be heard.
Though there are suggestions that self-care, therapy, yoga, meditation, diet—and, according to a Reiki practitioner I consulted, conversations with your past self (you be the judge!)—can all help lessen the symptoms, if you have fibromyalgia you must work with your doctor or doctors to find what works best for you. And this may also take a while. A years-long while. But also, you may need to question, test, or even reject the opinions you are given. After a decade and a half of symptoms, I challenged some traditional doctors’ opinions that there was nothing left to be done, no specialist out there who could help, by visiting a naturopath who was treating other fibro patients. The visits not only provided me with valuable new information about my condition, they also helped me to identify changes in diet, supplementation, and lifestyle that seem to be lessening my symptoms.
In one of the most striking scenes of Five Foot Two, Gaga is in pain but anxious about what she looks like to those around her. Is she strong enough? Does she look weak? How will people know she is a strong woman? She covers her face with her hands. “Do I look pathetic?” she asks. What is most stunning, however, is not what appears on the screen but that the scene appears at all. By allowing herself to be seen at her most vulnerable, Germanotta delivers the message that vulnerability is not a weakness but strength itself.
Five Foot Two sends a bullhorn proclamation that a major component of being healthy is utilizing our voice—not just to talk or sing and do the things that come easily to us, but to open ourselves wide as activists—speaking up and speaking out even in the most challenging of environments so that we might help ourselves and lots of other people, too. In finding it, we destroy the stigmas that impede our progress, hold us from our truths, and keep us at a standstill. The backdrop is a call to arms: Promise yourself you’ll be the cure