AS A preteen, Mary Morris would start to cough during ballet class and be forced to take a break for fear of an asthma attack. The girl would sit off to the side, hunched over her knees, trying to catch her breath and reaching for her reliever inhaler. “I could feel the girls giving me side-looks,” she says of her fellow dancers.
“There was an assumption that I had stopped trying. That was a big hit to my self-esteem,” recalls Morris who’s now 20, and now appreciates that her asthma wasn’t under control.
The student at Mississippi State University had been diagnosed with asthma when she was 12. That finding was no surprise: she’d had symptoms and the disease runs in the family – her mom has it. What did surprise Morris was the social stigma that accompanied the respiratory condition.
“It kind of felt like a nail in my coffin socially every time I had to use my inhaler in front of the other girls,” Morris says. She would avoid taking her asthma medication in an attempt to fit in. “I would say to myself, I’m going to push through. But what a lot of people don’t realize about asthma is that it’s not something you can push through,” she says. “The harder you push, the worse it gets.”
Experts say the sense of social pressure that Morris experienced because of asthma isn’t uncommon. While using an inhaler can lead to embarrassment, the stigma also runs deeper in Western culture – reinforced by film and TV portrayals of those with asthma as being weak or unable to keep up in sports, despite a reality that many athletes have both asthma and good disease control. While those who don’t have the condition might not think twice about these stereotyped depictions, they can have a lasting effect on the young people who do live with asthma.
With studies showing the use of controller medication as low as 25 to 35 percent among teenage asthmatics, plus an association between poor adherence and severe asthma attacks, Dr. Anna De Simoni decided to explore the resistance to inhaler use. De Simoni, an academic lecturer in primary care at London’s Queen Mary University, and her team tracked adolescent attitudes through the online posts of 39 teenagers with asthma on the Asthma UK forum.
In their findings, a number of factors contributed to poor use of asthma medication, including poor routines, deficient inhaler technique, lack of parental involvement and medication costs. But one aspect that stood put was a fear of being mocked by peers or feeling embarrassed to use an inhaler in front of them.
It Wasn’t ‘Cool’
to Have Asthma
Jake Cohn can relate. He remembers growing up in Telluride, Colorado, and watching movies such as Little Giants and Lord of the Flies and thinking “the nerdy kid is always the one with asthma.”
Cohn, 31, is a professional freeskier – the modern version of alpine skiing that involves tricks and obstacles. While clearly the opposite of a stereotypical nerd, he spent the first three birthdays of his life in the hospital because of severe asthma. As a young adult, Cohn traveled regularly to competitions and continues to travel for film and photo shoots these days, accompanied by a suitcase filled with asthma medication.
Today, he is on top of disease control. But if you ask Cohn how he treated his asthma when he was 16, that’s another story.
“It wasn’t ‘cool’ to have asthma,” says Cohn. “When I was in high school, I was ignoring my medication. I wouldn’t take any unless I got a cold.” He also remembers being 12 years old, inviting friends over and being overcome with the realization that there was medication paraphernalia all over his room. “My room looked like a space station with the tubes, inhalers and nebulizers,” he says. Soon he pinned up ski posters to make his room look more sporty, and less like a hospital.
He was always heavily involved in sports, playing ice hockey in the ninth grade, and attending ski academy in the later grades. That’s the time when he was the most in denial about needing his medication. A trip to Hawaii at 19 landed him in a Honolulu emergency department with an asthma attack. “When I got home, I thought how scary that was, and how I still have severe asthma,” he says. Cohn went to see the respiratory experts at National Jewish Health in Denver, where he’d been a patient as a baby, to get serious about finding asthma control.
Morris also learned what disease management means, but only after enduring more of that sense of stigma in the classroom. “It was the same as ballet class. I would get to the point where I needed to use my reliever inhaler and I would use it and get side-looks,” Morris says. “I felt like the teacher looked at me like I wasn’t even trying.”
She would try to wait to use her inhaler in private. “I wouldn’t even make it until the end of class,” Morris says with a slight laugh. “I would be wheezing and coughing with my face turning red.” It wasn’t something she could be discreet about.
The episodes in school and in ballet class changed Morris’s outlook on treating her asthma, leading her to say: “Asthma doesn’t define me.” She began using daily preventer drugs – today she uses an Advair Diskus inhaler and takes Singulair – to control breathing symptoms and block inflammation. She uses the Ventolin rescue reliever only for its intended purpose – immediate airway relief.
London Nichole confesses to having felt embarrassed about her asthma, which she’s known about since the age of 6. “I’m always hoping that when I need to use [my inhaler] that there’s a bathroom to use it in private,” says the 22-year-old civil engineering student in Oregon. The keeping-it-under-wraps approach has limited her in social situations. “I don’t like it when my asthma acts up, so I try to walk slower and people my age are walking faster and I tend to get left behind.”
Reducing Stigma with
Controller Meds at Home
Yet asthma is a controllable disease – and control can help to alleviate asthma stigma as well as symptoms. There are many forms of medications, but the most common treatment for moderate to severe asthma remains the use of an inhaled corticosteroid, which is paired with a reliever inhaler (called a bronchodilator) to help when you’re exposed to asthma triggers or feel symptoms.
Dr. Todd Mahr, an allergist at Gundersen Health System in La Crosse, Wisconsin, has seen many patients who aren’t compliant with daily controller medication. But he says what some young people may not realize is that controller medication is usually taken at home. This means they won’t have to use their reliever inhalers nearly as much in public, since control of inflammation in the airways leads to far fewer symptoms in the day.
Mahr uses techniques like shared decision-making between teenage patients and their parents, encouraging the use of a smartphone to set reminders to take medication and working with the young patient to find out: “What works for you?”
“For young people who love sports, I tell them about track athletes or Jerome Bettis in football who have asthma and regularly use their medication,” Mahr says.
Dr. Bruce Bender of National Jewish Health views the stigma issue as complex. “Adolescents are trying to establish their own identity as they are preparing to become adults. Being ‘different’ is really difficult,” he says. They may also find it difficult to accept the idea of having a chronic illness.
Bender finds that communicating with a teenage patient and the parents at the same time can be tricky. Some parents try to take control of the situation, monitoring their teen. “It can become a power struggle,” he says. “Talking to the adolescent means talking to the parent and coming up with a clear agreement for who is responsible for what.”
Bender likes to make a “verbal contract” with the patient, and agrees with Mahr that the controller medication dose can be taken at home. “It’s not something teenagers have to take with them.”
In the U.K. research, De Simoni found that parents were mostly unaware of the social stigma their teens faced. She finds that parents have an important role in medication compliance, and recommends they start discussions about asthma treatment when both they and their teen are calm and unlikely to be interrupted. “In our study, teenagers found the worst time for parents to talk to them about inhalers and asthma was when they were stressed and/or in a rush to leave the house.”
The impact the social stigma has on teenagers can often be underestimated. “I think it is very powerful and recognizing that for the physician and the parents is very important,” Bender says. “If kids are seeing this ‘weak’ depiction of themselves in popular movies, it’s certainly not going to help.”
Impact of ‘Wimp’ Stereotype
in Movies, TV Shows
Asthma stereotyping in culture has been common enough to merit a few published studies. In 2012, cultural anthropologist Cindy Dell Clark analyzed 66 movies that contained one or more scenes showing asthma and interviewed tweens aged 9 through 12 about how they perceived the scenes. The movies shown as examples were The Goonies, Toy Story 2, As Good As It Gets, Signs and Without a Paddle.
Clark, an associate professor at Rutgers University in Camden, New Jersey, identified four main stereotypes, which she thinks still apply today. In 17 percent of asthma-related scenes, the character with the disease was portrayed as a wimp or social outcast. In 41.5 percent of asthma scenes, an asthma exacerbation was triggered by a stressful situation and 3.3 percent of scenes left the impression a child could overcome asthma simply by exerting willpower. A fourth stereotype involved using asthma as a form of power, typically with the inhaler brandished as a weapon.
Clark points to the 1985’s The Goonies as the movie that established a screenwriting model that’s still used when it comes to asthma. “The idea of stress response stemmed from it,” she says.
There are countless examples of asthma misrepresentations in movies in the 1990s and 2000s. The hit TV series Malcolm in the Middle, featured Stevie, the friend in a wheelchair who was missing a lung and had asthma. He could only manage a few words between deep breaths. In Hitch, starring Will Smith and Kevin James, there’s a scene where James’ character is seen to “cure” himself of asthma – tossing aside his inhaler as he goes in for kiss with the woman he has been pursuing.
In interviewing teens who didn’t have asthma, Clark found it troubling that they presumed stressful situations set off the disease after viewing scenes such as one in The Goonies, where a kid needs his inhaler after being frightened. While stress can contribute to asthma flare-ups, the most common triggers include allergens like pet dander, pollen or irritants like smoke or smog. “Hollywood belittles the disease as minor and mocks it,” says Clark.
Nancy Sander, the now retired founder of the former Allergy and Asthma Network Mothers of Asthmatics organization, lobbied hard in the early 2000s to get the TV channel Nickelodeon to remove a character named Carl Wheezer, who had asthma, from the series Jimmy Neutron: Boy Genius. Sander wrote to Nickelodeon executives to make them aware of the how the character was inaccurately portrayed and victimized children with asthma. When they weren’t responsive, she turned to representatives in the U.S. Congress, decrying the portrayal of children with asthma as “emotional wimps.” Her efforts succeeded; Carl Wheezer was written off the show.
Sander sees some improvement today, but agrees that the many misrepresentations that remain “out there” make the job of educating society about asthma more difficult. Clark believes “this isn’t just an identity politics issue, this is an issue that we know influences patients’ adherence to treatment.”
Some recent film and TV productions are starting to get the picture, and their work is important to shifting the cultural stigma about asthma. The NBC TV drama This Is Us, features a young character Annie, who has asthma. In an episode of the 2016 first season, Annie is seen using her inhaler before heading out to school, after hearing a reminder on her mother’s smartphone.
In another scene, there’s mention of a character’s cat. He says he doesn’t want to bring the cat into the family’s home because it might set off Annie’s asthma. Both scenarios are more of an accurate representation of the life with this disease condition, which adolescents with asthma can find relatable rather than off-putting.
When it comes to the doctor’s office, De Simoni encourages physicians to regularly check in on social issues related to asthma to “provide better support, improve inhaler taking and consequently health outcomes.” She finds that using a normalizing statement helps to get the discussion going. For instance: “Some teenagers feel embarrassed about taking their inhalers. Have you experienced this?”
As one who’s lived through the stigma, college student Morris recommends that the more “encouragement and normality” a parent can give the condition, the better it will be for your child. To a young person dealing with peer pressure and the stigma surrounding it, she advises: “Look at yourself and say: ‘Asthma doesn’t define me, asthma helps shape me.”
Overcoming stigma may start with better disease control, but clearly a positive attitude like Morris’s or Cohn’s can help with the psychological side effects.
Sidebar: Tips to Avoid Asthma-Related Social Stigma
David Beckham, Bono, Tyler, the Creator, and Jessica Alba. These names in sports, music and movies have all spoken about their asthma. Why mention them? When you talk to a teen about asthma control, it may help to raise that even celebrities walk in their shoes.
That’s among the advice the Asthma and Allergy Foundation of America (AAFA) has to reach young people. “We had an event with Rashad Jennings, who was the chubby kid with asthma. It didn’t stop him on the football field,” says AAFA spokesperson Sanaz Eftekhari. “A lot of parents told us their kids were going to school more confident [after meeting him].”
For doctors: make sure teen patients understand controller meds and that these can be taken at home. As well, probe more into quality of life questions, says U.K. researcher Dr. Anna De Simoni. For parents, she says to keep the dialogue going, but pick your spots, when your teen is calm and not rushing.
One online resource for the asthma community is AAFA’s own support forum, which can be found here.
Have you faced asthma stigma? Let us know on Allergic Living’s Facebook page.