Does Netflix Trivialize Pain?

By Pat Anson, PNN Editor

Movies and TV shows have long been criticized for the way they depict women, minorities and religions -- either through sensationalism, stereotyped portrayals, or simply omission.

A new analysis of popular programs that aired on Netflix suggests that physical pain is also being ignored, trivialized, or presented in misleading ways.

Researchers in Canada and the UK looked at over a dozen movies and TV series that featured teenage characters. They found that the teens’ pain was almost always the result of violence or accidents – not common medical conditions such as migraine or menstruation. The characters often had minimal reactions to their own pain and observers had “an overwhelming lack of empathy” for them.   

“If we’re not showing the types of pain that adolescents might typically experience like back pain and menstrual pain, then we’re trivializing pain. We’re not doing a great job of enabling them to think about how to manage pain, how to talk about pain and how to show empathy when other people experience pain,” said lead author Abbie Jordan, PhD, a lecturer in the Department of Psychology and Centre for Pain Research at The University of Bath.

“This research matters because if every film and television series shows a boy being a ‘tough guy’ when they experience pain and a girl as a ‘damsel in distress’ in need of saving, they might think they have to be like that in real life. This depiction reinforces old-fashioned ideas about gender and is misleading."

Jordan and her colleagues watched programs such as Sex Education, Stranger Things and Enola Holmes, and found that viewers were exposed to an average of 10 incidents of pain every hour.

The two Netflix shows with the highest number of painful incidents were Outer Banks, a series about teens searching for a hidden treasure, and Spiderman: Homecoming, a movie about a young Peter Parker facing off against a new villain.

Violence (57%) was the most likely cause of pain on the Netflix shows, followed by everyday pain such as headaches (21%) and pain stemming from injuries (20%). Chronic pain or pain resulting from medical procedures were depicted less than one percent of the time.

“‘OUTER BANKS”

Researchers say the Netflix shows often reinforced sexist and patriarchal stereotypes. Boy characters were more likely to experience pain (77%) than girls (23%), and they were also more likely to be criticized or laughed at by other characters. Boys were often portrayed as heroic figures coming to the rescue, while girls were more emotional when reacting to pain.   

The plots and characters are all fictional, but researchers say adolescents watching at home are likely to mirror the behavior themselves.  

“Media is one of the most powerful engines of influence on children’s development and could be harnessed to address pain and suffering in the world. Stories matter. Fictional stories can matter more in some cases than real-life stories. So, let's create stories to reflect the world we want to see: A humane, diverse, inclusive, equitable, compassionate, and caring world,” says co-author Melanie Noel, PhD, an Associate Professor of Clinical Psychology at the University of Calgary.

“I want Netflix to take this seriously and get excited and inspired to directly influence millions of children around the world. They have a monumental opportunity to influence the compassion and humanity we see in our children and our future world.”

The study findings, published in the journal PAIN, echo a previous study that showed pain was trivialized for even younger children (aged 4-6 years). That study also showed that chronic pain in childhood and adolescence was rarely portrayed in popular media.

‘Take Care of Maya’: The High Cost of a Mother’s Love

By Cynthia Toussaint, PNN Columnist

Netflix’s top-notch documentary, Take Care of Maya, was excruciatingly painful for me to watch because it hit so close to home. I related on many levels: the disease, maltreatment from healthcare professionals, being labeled crazy, the family breakdown, and the pursuit of justice. But the dagger to my heart was the price paid for a mother’s love.

Like me, the protagonist, Maya Kowalski, has Complex Regional Pain Syndrome (CRPS), but the over-riding message of the film is about something far more insidious. It lays out the abusive extremes some health and social care systems take to make a buck at the cost of patients and their families. Sometimes that price can be unimaginable.

In Maya’s case, her parents were falsely accused of child abuse, specifically making their daughter ill for their own gain, a disorder known as Munchausen by Proxy. This misguided allegation led to Maya being kidnapped by hospital administrators, who then barred her from seeing her family, all while the 10-year-old’s physical and emotional pain became increasingly worse.

It was horrifying to watch Maya’s family unravel under the strain of this prolonged nightmare, in particular her bold and unflinching mother Beata’s relentless confrontations with the powers that be.

After multiple failed attempts to reverse matters in the courts, Beata, the focus of the abuse allegations and the target of the hospital’s ire (***spoiler alert***), became increasingly despondent to the point that she hanged herself to give her daughter the best chance of getting back home.

‘They’re Killing My Daughter’

I’m guessing that many who watched the documentary found its facts too fantastic to be true – and there was a time when I might have agreed with them. But I’ve lived too much of this story to question it now.

In my early 20’s, when it was clear that my still unnamed disease wasn’t going away, my mother became progressively distraught over watching my life slip down the rabbit hole. It’s fair to say my recovery came to be her over-riding obsession.

Mom wrote 200+ searing letters, sometimes demanding, at other times begging my HMO to diagnose and treat me. She spent large swaths of those years on the phone in desperate attempts to get me, as she coined them, “no-care” appointments, all in the hope that a compassionate physician or administrator would at last hear her pleas and change my course.

My poor mother became more and more unglued and unwell from the abuse, aimed first at me and then toward her, from this evil empire. She developed life-threatening heart problems and her legs, addled by aching varicose veins, went from bad to worse from constantly lifting me. Perhaps my most distressing memory of those dark days was when I’d hear her full-volume moans emanating from out-of-control sadness.  

One day after my HMO dropped the ball on an appointment we’d driven miles to attend, Mom snapped with rage. With super human strength, she hoisted my 50-pound wheelchair in the parking lot and smashed it into her car. As I cried in fear, she repeatedly bashed away.

“They don’t care about my daughter!” she screamed. “She’s dying! They’re killing my daughter!”

During this time, I was terrified for my mother’s life. Though it never crossed my mind she would take her own, I was hounded incessantly with the thought that she would succumb to a stroke or heart attack.

Maya’s mother made the ultimate sacrifice by taking her own life to save her daughter’s. Some might say that was tragically misguided, but I’m certain Beata’s intentions were true and real. My mother said to me on more occasions than I care to remember, “If cutting off my arm would make you well, I’d do it.” I never doubted her.

After fighting my HMO for nearly a decade with no tangible results, not even a diagnosis, my mom pulled up stakes, but in a different way than Beata. Mom moved to New York to pursue her long-delayed acting career. When I confronted her about feeling abandoned, she explained her reasoning. “Maybe if I go, you’ll get better by doing more for yourself,” she told me. It didn’t have to be logical.

In Beata and my mother’s desperation to somehow, someway fix impossibly tragic situations for their daughters, both made questionable choices out of love. It’s true, the path to hell is paved with good intentions, especially where chaos and heartbreak intersect.

Like Maya, I couldn’t just fold tent and walk away from the institution that did me wrong. Sure, I wanted justice for me, but also for my mom. I became a spokesperson and a whistle-blower for HMO reform in California, hell bent on exposing all of their atrocities. I did get a number of licks in, multiple high-profile media stories that helped change public opinion, which helped pave the way to sweeping legislative reform.

In retrospect, something I think of quite a bit these days, the cost was too high. I’m harassed by this entity to this day and they were successful in killing much of my most important work. In short, the fallout from my justice-seeking made me sicker and sadder over the decades, taking away more than it gave.

When I see Maya seeking justice in her mother’s name, I have great respect for her, but also concern. This young woman is now in remission and, going forward, my prayer is that she puts her health front and center. After poignantly telling her story on a world stage and prevailing in the courts (which I believe will mercifully happen soon), I hope Maya will step away with the knowledge that she’s done enough, and never looks back. It’s time to save herself.     

It’s also time to grieve, maybe more than anything, the loss of a mother’s love.    

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Why ‘The Bleeding Edge’ Gave Me a Panic Attack

By Emily Ullrich, Guest Columnist

If you haven't seen it yet, you've likely heard the buzz about The Bleeding Edge on Netflix. This documentary should be seen by every adult in America, not just chronically ill or chronic pain patients.

The Bleeding Edge gives insight and affirmation to those of us who have dealt with the medical system a little too much and demonstrates how important self-advocacy is. If you haven't seen it yet, don't let what I'm about to tell you deter you. I've seen it twice now. The first time I watched it, I had a full-on panic attack because it reminded me of the infuriating ordeal I went through dealing with the American medical system.

I wanted to watch the film again, hoping I would be able to watch it more objectively. I made it through the second time without a panic attack, but I was still yelling at the screen.

The film covers an array of medical device errors and malfunctions. But more importantly, it also delves into the mistakes and oversights that the FDA, CDC, American Medical Association and others have made (and continue to make) at the expense of our health because it's more lucrative to make us sick than it is to ensure our safety.

One of the main topics in The Bleeding Edge is the autoimmune disorders that many women developed after the implantation of the Essure birth control device. I was especially stricken by this story.

My first experience with chronic pain was pelvic pain, due in part to endometriosis. I started having my periods when I was 11 years old, and by age 12 was literally passing out because of the severe pain I had when menstruating. I saw doctor after doctor, and every one of them told me the same three things:

“This is normal.”

“At least part, if not all of this, is psychological.”

“Take ibuprofen and a hot bath, and you'll be fine.”

Of course, they were all wrong.

By age 19, I went to probably my twelfth doctor. She decided, in her infinite and culturally superior attitude, that since I had two sexual partners in my lifetime that I must be promiscuous. And if I continued this reckless behavior, she would not be able treat me and would be forced to tell my parents. When I told her I didn't need to be judged or lectured, she clucked her tongue and shook her head, as though I was a lost cause.

Many years and irresponsible, uncaring and uninformed doctors later, at age 31, I went to a doctor who told me I probably had endometriosis and performed a laparoscopic procedure to confirm this diagnosis. The procedure was also supposed to remove it and I was supposed to feel better. It didn't.

As I aged, it got worse. And as I moved around the country, I had to go through the degrading and exasperating experience of finding a doctor who believed me and believed in endometriosis. Many OB/GYN's and MD's still do not.  Even now, I see doctors on occasion who refer to it as a “garbage pail diagnosis.”

The Mirena IUD

At age 36, I was finally referred to a pelvic pain specialist. He believed in my pain and suffering and wanted to help. I cried because he was so nice.

After a fourth endometrial ablation surgery, he suggested the Mirena IUD as a long-term solution to my problem. He said it would not only prevent pregnancy but would be effective in reducing or eliminating my periods. As I lay back to have the IUD inserted, he assured me that it would not be painful that I would merely feel a “slight pinch.”

I never felt ANYTHING as excruciatingly painful. The doctor mistakenly punctured the fundus of my uterus. So, he casually penetrated me again with the same invasive tools, pulled the IUD out, opened a new one and attempted to place it. My uterus simply spat it back out at him. He said, laughing, “Your body doesn't seem to like this! Wanna try it again?”

I should have listened to my body and said no. But he tried again and finally placed it. For the next nine months. I bled profusely every day and the pain was worse than ever. I called and visited the doctor numerous times throughout these months, and every time he assured me the bleeding would stop and I should be patient.

Finally, I marched into an appointment and demanded he remove it. He did, and although I had pain for the next few days, it finally got a little better.

My point in all of this is that I now have about 15 chronic pain conditions. And with each one, I have a similar horror story. I feel a connection to the women who had the Essure device and who later developed autoimmune illnesses because of it. I will never know if any of my ongoing list of health problems stemmed from the Mirena, but I do know that after my bad experience with it and a few other attempted medical devices, my body doesn't respond well to foreign objects.

We are all different chronic pain snowflakes, if you will, and different treatments work for different people. However, as one goes through the process of repetitive ER visits, hospital admissions and doctor's appointments, we get to know what we can and cannot tolerate pretty well.

The pain patients' mantra of “Be Your Own Best Advocate” could not be hammered home better than it was watching The Bleeding Edge. The film struck a deep chord within me about the irresponsibility of our government, medical companies and doctors, as well as their willingness to suspend disbelief if it is easier and more financially convenient, even if it's at the cost of people's lives.

It is very much like the movement to stop the use of opioids, a proven and mostly safe class of pain medication, while encouraging the use of under-tested drugs with bad side effects that are often prescribed off label to treat conditions they were never intended for. It doesn't matter anymore if the patient has a better life or not. It only matters that the medical system drains our wallets and souls, while selling theirs.

Still, after all of this, we have to fight. We have to because no one else is going to do it for us. We have to do our own research and educate ourselves about medical devices and treatments.

As The Bleeding Edge demonstrates, when you can buy stock in healthcare companies, when government became controlled by corporations, and when doctors get paid for using and recommending their products, we lost the ability to trust them. 

Emily Ullrich lives with Complex Regional Pain Syndrome (CRPS), Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis,  Interstitial Cystitis, migraines, fibromyalgia, osteoarthritis, PTSD, insomnia, bursitis, depression, multiple chemical sensitivity, and chronic pancreatitis.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pained Life: It Never Hurts to Ask

By Carol Levy, Columnist

Recently a documentary was released on Netflix about Lady Gaga.  A part of her story is that she has fibromyalgia. 

I have not seen the film, but understand she devotes a little time to detailing and showing how she deals with chronic pain, both physicially and emotionally. Articles and posts abound in chronic pain social media about the film and Lady Gaga's pain.

The odd thing is many of the writers start by complaining that people don’t understand their pain, why they have to take drugs, and why they can't do many things that seem so easy to everyone else. 

Then, strangely, they do exactly what they complain happens to them.  They express doubts about Lady Gaga’s diagnosis, wonder if she is malingering, and say she can't really have fibro because her level of suffering and disability is not the same as theirs.

It seems we in the chronic pain community want to have our cake and eat it, too.  We want to have the discussion about chronic pain made public. We want awareness. But the awareness has to be exactly the way we want it or we don't want it at all

SCENE FROM "GAGA: FIVE FOOT TWO"

Many in the pain community express feelings that anything in the public eye that even hints of chronic pain should be about the person's struggles and life interruptions caused by pain.  Lady Gaga is a case in point. 

“She didn’t talk enough about fibro,” writes one person, others echoing the sentiment. “I thought from all the hype I heard it was going to be about that.” 

It would have been terrific if Lady Gaga had devoted more time to her disease and its effects on her life, but then that really was not the point of the documentary.

“Some of the film may actually be hurtful to some of us, as it shows her being able to do very physical things that are often beyond many of us as we struggle with the pain. If you have watched her perform she is not a sedentary singer,” wrote one poster on social media.  

Maybe it is worth asking her. Could you do something more, maybe another film or even just a commercial, that would bring needed attention to chronic pain and its effects on our lives?  

Last month was Pain Awareness Month, and it went by with almost no awareness or notice at all.  Lady Gaga might be the awareness hook that we need.

But we need to stop lamenting, hoping and complaining that no one is doing enough.  It is past time to take the bull by the horns.  We have to do it ourselves.  As they say, if not now, when? If not us, who?

And who knows? If someone or a bunch of someones ask Lady Gaga or another celebrity to be our voice, they might actually respond. If we don't ask, we’ll never know if they want to help the pain community.

The worst they can say is no.  And maybe, just maybe, we can get a “Yes.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Lady Gaga Denies ‘Making Up’ Her Chronic Pain

By Pat Anson, Editor

Lady Gaga has postponed the European leg of her “Joanne” concert tour, announcing in an Instagram post that “trauma and chronic pain have changed my life” and would keep her from performing for several weeks.

Last week the 31-year old entertainer also canceled a concert appearance in Brazil and revealed for the first time that she suffers from fibromyalgia.

“Lady Gaga is suffering from severe physical pain that has impacted her ability to perform," tour promoter Live Nation said in a statement. "She remains under the care of expert medical professionals who recommended the postponement."

Some critics have questioned the severity of Lady Gaga’s pain, claiming she used it as an excuse to postpone her tour or as a publicity stunt to promote “Gaga: Five Foot Two,” a Netflix documentary that shows her being treated for chronic pain.

scene from "gaga: five foot two"

Lady Gaga responded to the criticism with the lengthy post on Instagram.

“As I get stronger and when I feel ready, I will tell my story in more depth, and plan to take this on strongly so I can not only raise awareness, but expand research for others who suffer as I do,” she wrote.

“I use the word ‘suffer’ not for pity, or attention, and have been disappointed to see people online suggest that I'm being dramatic, making this up, or playing the victim to get out of touring. If you knew me, you would know this couldn't be further from the truth. I'm a fighter. I use the word suffer not only because trauma and chronic pain have changed my life, but because they are keeping me from living a normal life. They are also keeping me from what I love the most in the world: performing for my fans.”

The Live Nation statement said Lady Gaga would “spend the next seven weeks proactively working with her doctors.”  

The singer's European concerts were scheduled to begin Thursday in Barcelona, Spain and run through the end of October.  Fans were told to keep their tickets until the concerts were rescheduled.  Lady Gaga is still scheduled to perform during the second leg of her North American tour, which begins November 5 in Indianapolis.

Fibromyalgia is a poorly understood disorder characterized by deep tissue pain, fatigue, depression and insomnia. As many as 90 percent of fibromyalgia cases are diagnosed in women.

Lady Gaga also has chronic hip pain from synovitis, an inflammation of the joint that can be caused by overuse or injury. Her struggle with chronic pain reportedly began over a decade ago with physical and emotional trauma caused by a sexual assault.

“I have always been honest about my physical and mental health struggles. Searching for years to get to the bottom of them. It is complicated and difficult to explain, and we are trying to figure it out,” Lady Gaga wrote on Instagram.

“I am looking forward to touring again soon, but I have to be with my doctors right now so I can be strong and perform for you all for the next 60 years or more. I love you so much.”

Lady Gaga: Chronic Pain Patients Shouldn’t Feel Alone

By Pat Anson, Editor

It’s rare for a celebrity to talk openly their health problems, but Lady Gaga is speaking up about her battle with fibromyalgia and chronic hip pain. 

During a news conference at the Toronto Film Festival promoting her Netflix documentary Gaga: Five Foot Two, Lady Gaga fought back tears as she described how “liberating” it was for the film to cover her decade-long struggle with chronic pain.

“There is an element and a very strong piece of me that believes pain is a microphone. My pain does me no good unless I transform it into something that is. So I hope people watching it who do struggle with chronic pain know that they're not alone. It's freeing for me ... and I want people that struggle with it to hear me,” the 31-year old entertainer said.

“There is a degree of self-deprecation and shame with feeling in pain a lot. And I want people that watch it — that think there's no way I live (with chronic pain) because they see me dance and sing and don't think that could possibly be — to know I struggle with things like them. I work through it and it can be done. We have to stick together. I don't have to hide it because I'm afraid it's weak.”

In a teaser for the film, there are shots of Lada Gaga wincing in pain as she receives injections on a surgical table. 

"It was incredibly hard, on a basic fundamental human level, to be near someone experiencing pain like that. There's nothing you can do, beyond filming," said director Chris Moukarbel.

"I felt I needed to continue to roll. She was very aware of people struggling with similar chronic pain. She's not even sure how to deal with it.”

a scene from "GAGA: Five FOOT TWO"

“It's a part of me, and I'm grateful to Chris for caring. The compassion is overwhelming. That's why it makes me emotional. It's very touching,” Lady Gaga said.

The singer’s struggle with chronic pain reportedly began with physical and emotional trauma from a sexual assault. She later suffered a hip injury, but hid her pain from fans and her own staff until she required surgery in 2013. The singer now reportedly suffers from synovitis, an inflammation of the joint that can be caused by overuse or injury.

“I hid my injury until I couldn’t walk,” Lady Gaga told Arthritis Magazine in March. “I had a tear on the inside of my joint and huge breakage.

Lady Gaga also recently acknowledged that she has pain from fibromyalgia.

"I wish to help raise awareness & connect people who have it," she wrote in a Tweet.

"Thought ice helped #Fibromyalgia. I was wrong & making it worse. Warm/Heat is better. Electric Heated Blanket, Infrared Sauna, Epsom Baths."

Last November, Lady Gaga posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket. Months later, she set aside her pain and soared around a stadium during a spectacular halftime show at theSuper Bowl.  

The singer told reporters in Toronto she was going to take a break from performing and  “slow down for a moment, for some healing.”  That prediction came true days later when she cancelled plans for a concert in Brazil because of severe pain.

"I was taken to the hospital its not simply hip pain or wear & tear from tour, I'm in severe pain. I'm in good hands w/ the very best doctors," she wrote on Twitter. "Brazil, I'm devastated that I'm not well enough 2 come to Rock In Rio. I would do anything 4 u but I have to take care of my body right now."