27 Sep Two films. Too Much Pain
Yesterday the NY Post published an article about the films, “Five Foot Two” which chronicles Lady Gaga’s struggles with pressure and pain, as well as Jennifer Brea’s film “Unrest” which focuses on her battle with the effects of “chronic fatigue syndrome”. The article is called “When You’re in Constant Pain and Nobody Believes You.” It’s a somewhat sensational title that frames the issue around the idea that people who are in pain often feel that they aren’t believed- by fans, friends, or doctors who struggle to find a clear physical source of that pain.
Both women at the center of these stories are incredibly driven people who place a great deal of pressure on themselves to be successful, and to get a great deal out of life. In her film, Lady Gaga has bouts of terrible pain that are clearly related to the insane pressure and judgement she faces on a minute by minute basis. As I watched the film it wasn’t surprising in the least that she might struggle in this way. Everyone, including the doctors trying to help her, recognize that stress plays a major role. Unfortunately, most of the treatment methods we see used (injections, massage, drugs) don’t directly address the stress, the root cause of that pain. To do so would be difficult because the train she is on is moving so fast, and so many people are riding on it, that it doesn’t even seem conceivable to stop it. Thankfully, in recent days it appears that she has begun listening to her body, as she has postponed some of her recent tours. Once again, the title of the article seems a bit over the top and misleading because there was never a sense in her film that people she was in contact with didn’t believe that she was in tremendous pain at times.
Jennifer Brea feels much more strongly than Gaga that her symptoms were not taken seriously from the start. While Jennifer was at Harvard pursuing a Phd she came down with a high fever and then started to have increasingly profound symptoms of chronic fatigue. In the press materials for her film, and in the film itself, she reports that she was told that it was “all in her head”; which is clearly an awful thing to hear or imply. However, while the science tells us very clearly that emotional trauma has a major impact on our health, the medical system largely places issues related to trauma in the mental health category and tends to ignore its impact on our physical health. If we shifted the discussion from mental health towards a less stigmatizing idea of emotional health, we might be able to have conversations that are less fraught. At one point in the film Brea and her husband talk with disdain about a physician who suggested that childhood trauma might play a role in her illness. While they were shocked by this suggestion, the ACE study which links trauma in childhood to a host of illnesses makes it clear that this is a question that every physician should be asking.
As anyone who had dealt with mind body syndromes, and intersected with the medical industry can tell you, there’s a range of ways in which doctors respond that are both helpful and hurtful. There are also a range of responses that people have to the idea that that their stress, or their emotional response to the world, might play a role in their health problem. Those that are especially resistant to the idea often respond with anger when the suggestion is made that their symptoms might have a mind body component- as Brea does repeatedly throughout her film. It is from within this complex stew of expectations and reactions that people often hear it’s “all in your head”. I imagine that this exact phrase is not used all that often, but this is clearly what Jennifer heard as she uses this phrase, in quotes, in her promotional materials and in her trailer.
From my own personal experience of working on a film about Dr Sarno for well over a decade, a lot of people respond to the suggestion that their back pain, fibromyalgia, chronic fatigue, migraines, etc might have a mind body basis, with profound anger. I wish I had a dollar for every time someone has said to me, “You’re telling me it’s all in my head!?!?” Even when I try to explain that no one is saying it is “made up or imaginary”, but instead that symptoms that can’t easily be explained by physical issues often have their genesis in our physical response to emotional stimulus, I am often met with dismissal and anger. I’ve learned to read people’s attitude about the issue before opening my mouth. It’s quite easy to see how doctors learn to read the lay of the land as well and struggle with how to give people the best advice they can without making them upset. Alternately, some have no bedside manner and literally do tell their patients that their pain is “all in their head”. One of the reasons that this is so terrible is because we tend to cede much of our own authority to doctors, affording them a great deal of respect and power. When they abuse that power by failing to listen or empathize with us it can be deeply disturbing. This is especially true for women who already find themselves marginalized in many aspects of our culture. In fact it makes a lot of sense that this exact kind of regular marginalization may be responsible for the stress that drives some of these symptoms in the first place.
Many women are frustrated by the fact that medical issues which lack a clear etiology such as migraines, fibromyalgia, MS, and Chronic Fatigue (ME) are not taken seriously by the medical industry. This frustration is exacerbated because women tend to suffer more from them than men. In fact one of the main themes of “Unrest” is that the medical system isn’t putting enough resources into finding a cure for chronic fatigue because it’s seen as a woman’s problem. Within our bio-technical framing of medical issues we often look for biological/genetic differences related to race and gender that may play a role. That lack of understanding of, or interest in, the problem might be connected to the fact that men have so much more power to begin with.
If we shift the focus of our lens just a little and look at ideas related to expectation and pressure – social norms, class, and privilege – it might not be as surprising that the kind of added stress involved with always being told by society that you are “lesser”, or deserve less pay or rights, can be enraging. Those who “move up the ladder” have generally learned how to repress their true feelings because complaining about inequality to those who benefit from power usually goes badly. This means that they have to repress their rage on a regular basis in order to move past the barriers of entry within academia, the arts, and business etc. Most entrenched systems reward people who stick to the status quo. When sticking to the status quo requires people to ignore their own feelings the stress can be enormous.
I recently had the pleasure of sitting next to a prominent African-American scholar on a flight home from a film festival. She told me about her daughter, who had a very supportive and fairly easy going upbringing which included private quaker school in Cambridge and an calm 4 years at Yale. When she finished college she went to get a law degree and a Phd at the same time and within a few months of that overwhelming pressure she was diagnosed with Lupus. When I mentioned the possible connection to the stress of taking on so much work my seat mate told me that this idea was interesting because so many of her daughter’s colleagues in academia, who were also African-American, had come down with Lupus as well. When I went to look at a web page about the causes of Lupus” this section jumped out at me.
Lupus discriminates against African American, Latina, and Native American women
African-American women are three times more likely than Caucasian women to get lupus and develop severe symptoms, with as many as 1 in every 250 affected.
And the disease is two times more prevalent in Asian-American and Latina women than it is in Caucasian women. Women of Native American descent are also disproportionately affected.
If one frames this issue through a narrative that recognizes that race, gender, and class based cultural stresses have a powerful physical effect on people, then the above facts make more sense. If we focus on the fact that women are asked to repress their emotions to a greater degree than men in order to thrive in competitive work/academic environments (and that women of color are forced to do so at an exponentially greater degree) then it becomes unsurprising that women are much more likely to have symptoms of stress related illnesses. Of course they do. Until our culture treats people equally this is unlikely to change.
In her doc Gaga, refers to times early in her career when she was forced by powerful men (producers and other industry people) to accept the narrative that it was they who were responsible for her success, rather than her talent or hard work. Part of her impetus in wanting to make this documentary clearly had to do with a desire to change that narrative, to unwind herself from it. She seems to understand that a good deal of her pain has to do with her emotions and in some sense the focus of the film is built around her struggle to deal with them. However, the conflict at the heart of it is that the rocket ship of her career can’t slow down enough to give her the space that she needs to truly heal.
In “Unrest,” the climax of the film is built around a case in Denmark in which a young woman with powerful chronic fatigue symptoms was removed from her home because the doctors believed that she needed a mind body focused treatment. The film frames this doctor as the villain. The idea that one’s physical response to emotions could be a causative factor in the illness is met with a barrage of anger. To be clear, I am not arguing that these illnesses are “all in people’s heads”. This is something I understand very well because my pain, and the subsequent muscle issues in my leg were, and are, very real. However, as I have struggled to deal with this issue, and to understand the how the mind and the body interact it has been become increasingly clear that if we ignore the emotional aspects of pain as well as auto-immune related issues then we severely limit our ability to address the problem. People like Dr. Gabor Mate (“When the Body Says No“), Dr. Sarno (“The Divided Mind“), and Dr David Clarke (“They Can’t Find Anything Wrong“) had to figure this out for themselves. However, their work forms a basis for exploring these issues.
For the past 70 or so years there has been very little focused research on the relationship between the emotions and health. Science doesn’t answer every question. It only answers those it is asked, and for years there wasn’t anyone asking questions about this relationship in a substantive way. That’s changing, and the science is beginning to emerge which recognizes the profound and complex relationship between our emotional response to the world and the physical toll it takes on our bodies. There is no doubt that neither Lady Gaga nor Jennifer Brea are faking their symptoms, nor that their symptoms are entirely “psychosomatic”. Their symptoms are physical, painful, and clearly overwhelming. Their symptoms are real. However, if we ignore the ways in which our bodies physically respond, in relation to our emotional orientation to the world, then we are missing at least half of the puzzle. Gaga seems to get this while “Unrest” seems to reject it.