Approximately 25 million people in the U.S. have asthma, according to the Asthma and Allergy Foundation of America. While that number shows how common the condition has become, the severe form is more rare. An estimate from a September 2021 study in the Journal of Asthma and Allergy found that about 9% of people with asthma meet the criteria for severe asthma.
Severe asthma comes with significantly more challenges than regular asthma. People with this condition tend to experience more symptoms, including increased activity limitations, greater prevalence of heart disease, and lower lung function. Even with high doses of inhaled corticosteroids—the most typical treatment option—those with severe asthma find it more difficult to control the disease compared to those with regular asthma.
In some ways, that makes severe asthma almost its own condition, not just a more intense version of a common challenge. Another difficulty for these patients? Making sure physicians and other members of their health-care team understand the nuances of severe asthma. Here, four patients offer their insights about what they want doctors to know.
It’s not ‘just asthma’
For most of her life, 69-year-old New York resident Donna Matlach was able to control her asthma effectively, but a bout with bronchitis 15 years ago left her with severe asthma, and she spent years trying to get doctors to see the difference.
“When I’m not in an active flare that feels life-threatening, my symptoms might be mild, so doctors tend to act as if it’s always like that, but that’s definitely not the case,” she says. “They might give me a rescue inhaler and say that’s enough, but this isn’t just asthma. This disease affects my whole life, and I want doctors to treat it that way.”
Although she’s been to some physicians who labeled her symptoms as minor, those aren’t the only health providers that seemed dismissive. She was once turned away from the emergency room by a doctor who told her “asthma isn’t an emergency.” Similarly, she’s had to convince paramedics to take her to the hospital during severe attacks.
“It’s difficult to articulate how terrifying it is when you can’t breathe and someone thinks you’re faking,” she says. “I’ve had three near-fatal episodes because of health providers who told me it’s ‘just asthma,’ so it’s not that bad. Eleven people in the U.S. die every day from asthma, and I have the most severe kind. This needs to be taken seriously.”
The struggle of everyday tasks
Part of the way Matlach’s severe asthma affects her life is through limitations handling everyday tasks. That might mean carrying a load of laundry up the stairs, going grocery shopping, or even tying her shoes. At one point, she couldn’t take a shower on her own because it was too difficult to raise her arms overhead to wash her hair.
“This condition can be disabling, in a way that some doctors don’t realize,” she says. “Also, I’ve had periods of time where I don’t know if I’ll be able to do anything at all from one day to the next. Having a doctor who understands the potential impact on quality of life is crucial.”
Setting goals with patients based on activities they want to do can be helpful, says Regan Lloyd, 18, a Virginia resident who was diagnosed with severe asthma as a toddler. Right now, as a college freshman, she checks in often with her pulmonologist to talk about ways she can continue to play sports at her school without triggering an attack.
She also discusses everyday activities that might be too taxing—such as going from one class to another all morning and then playing lacrosse in the afternoon. Together, they devise plans to keep her energy steady and her severe asthma controlled.
“It’s nice when doctors ask what’s important to you in terms of what you want to do,” she says. “That makes it easier to balance having the condition with having a life.”
Symptoms don’t always include wheezing
One of the most curious aspects of severe asthma is that it doesn’t always present with classic asthma symptoms, particularly wheezing. That can lead to a higher likelihood of being misdiagnosed or undertreated.
“For me, I don’t just suddenly stop breathing, and there’s no wheezing, so it’s hard for doctors to understand the severity of my condition,” Lloyd says. “I’ve had doctors express surprise that I could be so chatty in the middle of an asthma attack. But I’ve said just because I can talk and I’m upbeat doesn’t mean I’m feeling well. I know my body. I know when something is going wrong.”
According to the American Lung Association, symptoms of uncontrolled asthma include chest tightness, shortness of breath, sleep disruption, coughing, and wheezing, and these tend to be alleviated by medication like a rescue inhaler. While such symptoms might be present in severe asthma, the difference is that control is much harder to achieve.
One diagnostic test that may help is bloodwork. About 4 in 5 adults with severe asthma have a form called eosinophilic asthma, or “e-asthma,” which is driven by too many white blood cells in the body. These patients will have increased levels of inflammation, which could prompt asthma symptoms as well as other difficulties, such as chronic sinus infections, a stuffy nose, swelling in the face, a rash or hives, and dizziness.
Breathing difficulties can create trauma and anxiety
Struggling to catch your breath or breathe deeply isn’t just frustrating—it can be upsetting enough to trigger posttraumatic stress disorder (PTSD). A 2011 study in the European Respiratory Journal found there’s a bidirectional relationship between PTSD and asthma. Those with one condition are more likely to develop the other.
That doesn’t surprise Virginia-based Christi Winstead, 35, an advocate in the severe asthma community.
“It’s difficult to separate mental health from a diagnosis of severe asthma, because there’s a certain amount of trauma related to this condition,” she says. “The fear of not being able to breathe is so overwhelming that even with mild symptoms like shortness of breath or a fast heart rate, it can be triggering.”
Winstead has worked closely with a medical trauma specialist who has experience with chronic illnesses, so she’s able to recognize the way physical symptoms may be affecting her mental state. She argues that physicians should consider this aspect of the disease because it can significantly impact how symptoms progress. For example, a mild symptom that may have been resolved with a rescue inhaler can become uncontrollable when trauma is sparked, and that could lead to hospitalization and more intensive treatment.
“Fortunately, I have a pulmonologist who asks how I’m feeling, and that doesn’t mean only my body,” Winstead adds. “Rather than asking about my asthma, it’s a conversation about how I’m doing as a person. That check-in, before any clinical discussion, is really helpful for reducing the effects of trauma.”
In addition to PTSD, people with severe asthma can struggle with other mental health challenges, particularly anxiety. Part of the cause is uncertainty, believes Matlach. For example, she’s gone through periods of being scared to drive because she’s concerned about having an asthma attack so intense that it might render her unconscious from being unable to breathe.
According to 2021 research in Brain, Behavior & Immunity, people with asthma are three times more likely to develop anxiety and depression than the general population, and those researchers note that chronic inflammation—the kind seen with e-asthma—could increase risk as well. The condition can also lead to symptoms such as sadness, fear, and social withdrawal.
“If a doctor isn’t comfortable addressing the mental-health aspect of severe asthma, it would be helpful to have a referral to a mental-health professional handy,” Winstead says.
Read More: What to Know About Severe Asthma in Kids
Like all patients, severe asthma patients just want to be heard
A common thread that weaves all these patient suggestions together is taking the condition seriously and understanding that severe asthma isn’t just a collection of symptoms that are slightly worse than regular asthma. In reality, they’re significantly more intense and can impact mental as well as physical health.
“It would be helpful for doctors to ask more questions than they do currently,” says Brian Hoffman, 59, a California resident who was diagnosed with severe asthma at age 2. The conditions runs in his family: both his father and his son have severe asthma. “We’re asked about how often we use rescue inhalers, for instance, but there are so many other questions that could help a doctor understand the scope of our experience.”
He suggests doctors ask questions like: Is your asthma worse in the morning or at night? How is your sleep quality? Do you experience mood changes throughout the day because of your condition? Do you feel like you don’t go out and socialize as much as you want to due to your severe asthma? What’s your reaction to exercise, and are you interested in increasing your level of activity? Are there any side effects from your medication that are affecting your quality of life?
“Not only do questions like these help doctors understand what’s going on, but they also help patients be more reflective about their experience,” Hoffman says. “Maybe as someone with severe asthma, you don’t realize you’re not seeing your friends enough until you’re asked about that, for example.”
Since the condition can impact everyday life, making sure patients feel supported is essential for better care.
“Severe asthma requires a treatment plan that includes worst-case scenarios and recognition of symptoms that may be unexpected, like extreme fatigue,” Matlach says. “Having a doctor who really listens to you and works with you can go such a long way toward making you feel supported.”
More Must-Reads From TIME