Lady Gaga announced on September 12th that she has fibromyalgia. Her fantastic documentary, Five Foot Two, now streaming on Netflix, displays the physical pain, the trauma and the shame of her illness. Her fearless film honestly illustrates the experience of so many of us who have suffered in silence with this awful syndrome or with any invisible illness.
I confess I have not been a fan of Lady Gaga. I didn’t like the costumes and the posing. I didn’t like her singing or her songs particularly. They were indistinguishable to me from standard pop fare. I saw her live with Tony Bennett hoping to be impressed and left underwhelmed. I did admire her social activism, and I was aware that she was a talented pianist and musician from a news segment I saw once. But I just didn’t get her or her rabid fans (several of my friends among them).
But then she tweeted she suffered from the same condition as I – fibromyalgia.
She cancelled the European leg of her tour and announced she had a debilitating pain condition. I didn’t hear about any of this until a friend sent me a report from The Guardian, and then I learned of her Netflix documentary. I wept when I read the news because she is so young. At 31, she is two years younger than I was when I first got sick. I didn’t dare hope her announcement would change anything. And I was also afraid to watch it; I was afraid to bear witness to the pain and despair.
So a friend, one of those aforementioned fans, came over and watched it with me. At points I wanted to crawl into the TV, into the film and into her life to help her. And I became very angry that I and others have been suffering for decades with no help, no decent research and no attention. Many also endure doubt and disparagement even from their own families.
Visually, the film is stunning and compelling – from her being hoisted up for her Super Bowl entrance to her in a swimming pool at night to her at a dance party in the desert at sunset. She reveals much – about relationships, about friendship, about how she works and even some funny bits about her so-called feud with Madonna. She explains why she wore those elaborate costumes. Her face is fresh, literally and figuratively. We see Lady Gaga but we also get to know Stefani, the woman behind the public persona. And to me, she was the most compelling I’ve ever seen her.
Obviously what intrigued me the most was the depiction of living with chronic pain. Within the first five minutes of the film Lady Gaga is getting a massage to relieve her pain, and she acknowledges right off the bat the close connection between the mind and the body. “If I get depressed, my body can spasm, like, into a full body spasm.”
And not only did this resonate with my personal experience, this is logical. Pain is a nervous system signal, and the mind is the largest component of the nervous system. And the nervous system is the last frontier of medicine; there’s much research still to be done.
Unfortunately some sufferers have been so mistreated and so doubted and had their integrity questioned so cruelly, that they are afraid to concede the close connection of the mind to our experience of our disease, to the sensations of discomfort and even the worsening of the pain. They fear to do so would delegitimize the very real physical aspects of our symptoms. But Gaga goes for it. She is fearless in describing all aspects of the illness. It’s awesome. (Awe was the word that came to mind, and as a fellow Jersey girl that adjective felt even more appropriate!)
Later in the film, before a birthday party for Tony Bennett, we hear her crying. The camera pans over the interior of her New York apartment, and we see her laying on her couch, with a pillow, naked with a towel laying over her. She has what appears to be a cold pack on her right shoulder. I wanted to call out to her and tell her NOOOOO – not ice! (I did say this to my viewing companion.)
And while crying she tries to describe what she feels:
It’s the whole right side of my body. It’s in a…I don’t know, a spasm. It feels like there’s a rope pulling from my, like, first toe all up my leg into my (she gestures around her hip)…and then around my first rib into my shoulder and then my neck, and head, jaw. My fucking face hurts.
She is sobbing, covering her face while she tries to describe these sensations.
I was riveted. It’s exactly how I feel when I am in a flare. In fact, her description was so familiar I started to sob with her. When I feel like that, I feel the fascia that connects disparate parts of my body lock up like a vise, throb and not let go.
And then this comes out of her mouth,
I just think about other people that, like, have maybe something like this, that are struggling to figure out what it is, and they don’t have the quick money to have somebody help them. Like I don’t know what I’d fucking do if I didn’t have everybody here to help me. What the hell would I do?
Bless her for that. I’ve thought the same thing, and my money is not as quick as hers. My health severely suffered when I could no longer afford massages or myo-fascial release or yoga therapy. Many of the treatments that work to relieve the pain are not covered by health care insurance. However, addictive opioids are. That’s so messed up! Our entire health care system is not well equipped nor set up to help people with such conditions.
Also Lady Gaga is unashamed to reveal the shame. She voices the humiliation we who are afflicted often feel. “Do I look pathetic? I’m so embarrassed.” Pain decimates self-esteem, so we feel it’s our own fault that we have a debilitating painful condition. And because pain is invisible and immeasurable, pain makes us doubt ourselves, makes us see ourselves differently, and makes us feel separate and apart. We feel embarrassed that we can’t do what we used to. We feel embarrassed we can’t adequately explain what it feels like. We feel embarrassed we can’t solve it.
She also embodies the anxiety and fear we feel about how our condition will affect our future. The unpredictability of our symptoms day to day turns any plans – for later in the day, for tomorrow, next week, month year fraught with unseen hurdles and obstacles. It’s frightening. Lady Gaga confides,
And I don’t even know, like, what a childbirth will be like. Or if I can. I know I think I can get pregnant. I just don’t know, like, what are my hips going to do? I don’t fucking know.” I’m not afraid of, like, those things like, getting pregnant and becoming older with my fans. I’m excited. I want to become an old rock star lady. Here…let’s put Trump on. That’ll knock me out. That’ll traumatize me. All you need to knock you out of your trauma is to be further traumatized.
I am not sure that “Trump trauma” trumps fibromyalgia pain, but that was funny. Stress and worry can trigger and exacerbate the pain of fibromyalgia. I now have regular news blackouts.
Other aspects resonated. Like me, she is very flexible, displaying her open hips in several seated postures. She often sits in half lotus and throwing her leg up on a fence. I’m told by my own doctor that hyper-mobility is associated with the condition. Lady Gaga is familiar with her body. She knows what and where her QL is. (The Quadratus Lumborum is is a lower back muscle.) And for someone whose body causes so much pain she seems at ease with her body. And with her nakedness. I admire that about her. (That’s also like me.) We see her exercising and doing resistance training which accurately portrays that sometimes we can exercise. She showed all of her life without worrying that such a scene would undermine others of her in excruciating pain.
Towards the end, we see her with her doctor. They discuss the need to do muscle re-education, the importance of psychological support, and the possibility of trigger point injections – all familiar to me. She tries to describe to her doctor what she is feeling,
It just feels like my muscles are, like, gripping all around my intestines. And it’s so inflamed. And my hip hurts every single day. I have chased this pain down for five years. And the fury in all of this is that I’m fucking strong and I can still be me. And when I feel the adrenaline in my music and my fans, like, I can fucking go. But it doesn’t mean I’m not in pain.
This too rang true. When you have this illness, you can push through the pain and perform using adrenaline. What no one sees is the collapse and extreme agony after that push. When she expressed frustration that she’d been chasing the pain for five years, I was again crying. I too have been chasing the pain – for eighteen years. And I’m tired, so very tired.
Her portrayal is remarkable not just for its honesty and bravery but also for her compassion. She also noted that since filming, she has learned:
So I didn’t have to reach out to her and let her know. Hope can be as painful as ice. But after watching Five Foot Two, with the comfort of a good friend next to me, a small window has opened, and I may, with her help, just be strong enough to dare to hope again.
Thank you Lady Gaga, your newest and biggest #Monster.