Living with severe asthma means much more than just going around with a rescue inhaler. Get the scoop from actual people about what it’s like — and what you should know.
Possibilities are, everyone knows someone who has asthma. This is because approximately 18 million adults in the United States have the condition. Despite its dominance, asthma is often misunderstood — as is severe asthma, which affects up to 10 percent of those who have asthma.
Severe asthma can be difficult to control, even with maintenance medications and rescue inhalers. “Severe asthma is based on the national asthma guidelines, and is also based on symptoms,” says Juanita Mora, MD, an allergist/immunologist in Chicago who runs the Chicago Allergy Center and is a volunteer national spokesperson for the American Lung Association.
Severe asthma is grouped as needing to use a rescue inhaler more than three times per week, waking up at night more than two times per week due to shortness of breath or wheezing, and using more than one oral steroid burst per year because your asthma is not under control. People who have severe asthma also have a decreased quality of life because of their symptoms — they may not be able to enjoy activities of daily living, like exercising or going outside, because they’re afraid of how it will impact their asthma symptoms.
If you have severe asthma, it’s important to know that you can still live a regular, normal life — it just takes some effort to learn your triggers, find the right treatment, and stay on top of your symptoms.
What Life With Severe Asthma Really Is
It’s about time to put some of that misconception about severe asthma to bed. Here are few things people who have severe asthma want you to know.
1. Taking charge of my care helps me live a full life.
“One of the biggest misconceptions I’ve found is that people tend to live with their symptoms rather than think there are going to be solutions to help them,” says Mora.
O’Neal found that being proactive was what helped her take charge of her severe asthma. “Over the years, I really had to take the initiative to reach out to different types of doctors and ask questions. You’ve got to take extra steps sometimes — more than just complying with your doctor’s wishes and getting your doctor’s visits in, and taking your medications.”
Imhoff says advocating for yourself in situations where you need accommodations — both at work and in everyday life — is important. “In order to take care of anybody else, you first have to take care of yourself. I can’t take care of patients if I’m having an asthma attack,” she says. “When I go to a new yoga class, I tell the instructor that I have asthma and I may need to take breaks. Make people around you aware so they can help if needed.”
Sommer is mindful of her asthma symptoms but has an active life and career: “You can’t see having asthma as a setback. Keep going after your goals, take your daily medications, be able to take care of yourself and be mindful of your health, and you can do anything,” she says.
2. There are different types of asthma, which have different triggers.
Just as someone who has severe asthma has more frequent, serious symptoms than someone with more mild asthma, there are also many different types of triggers. These may be environmental allergies, such as pollen, pet dander, or dust mites. Poor air quality and smoke often affect people with asthma. And some people, like O’Neal and Imhoff, have what’s called eosinophilic asthma, which can be severe and chronic, even in the absence of other triggers. “Eosinophilic asthma has everything to do with a certain type of white blood cell, and nothing to do with anything else,” O’Neal says.
3. I need to be prepared at all times for an asthma attack, and others can help.
“When you live with asthma, it’s very much a family thing — all hands on deck,” says Kendra Sommer, who is in her mid-twenties,and was diagnosed with severe asthma as a child in 1994 but now has milder, well-controlled asthma.
Sommer runs a production company in Green Bay, Wisconsin, called Cruisin’ with Kendra and travels frequently: “When I go on flights, my rescue inhaler is always in the carry-on; it’s always nearby.”
4. Having compromised airways is scary and can take a psychological toll.
JoJo O’Neal, 55, of Orlando, Florida, was diagnosed with severe asthma in 2004. She now runs a Let’s Kick Asthma support group, where she has an activity called the Straw Challenge: Anyone who doesn’t have asthma is asked to take a cocktail straw, hold their nose, and only breathe through the straw for 15 seconds. “Most people don’t make it through those 15 seconds; they begin to panic,” she says. “And that’s when I tell them, ‘Imagine. At times it may not be that severe, but it can be.’ The psychological aspects of going through an asthma attack can really mess with your mind.”
5. I can workout, but may need to take breaks and look out for myself.
Working out is not a matter of self-discipline for someone with asthma; they may need to stop to give their lungs a rest.
Sommer’s mother, Ginny, recalls a time when her daughter was in elementary school gym class and stopped because she was short of breath: “The gym teacher asked what was going on, and when Kendra said she was having trouble breathing, he said, ‘You don’t stop for anything, not even to tie your shoes,’” she recalls. Ginny later explained to the teacher the specifics of Kendra’s asthma, as he didn’t know about the condition.
Still, workout is important when you have severe asthma, and with proper treatment, it’s possible to stay active. “Asthma should never be a deterrent as far as exercise,” says Dr. Mora. “We can get the asthma under control so that you can achieve and do everything that you want.”
6. Asthma isn’t “just asthma” — it’s a serious condition.
While symptoms like a cough, wheezing, or shortness of breath may not seem that alarming, they can quickly spiral for someone who has severe asthma.
“About four years ago, I had a minor cold and felt okay during the day. At night I had a little cough, but as I lay down to go to bed, I felt like I was drowning. I ended up being admitted to the hospital for a week for my asthma attack,” says Rachel Imhoff, 30, an urgent care nurse from Pittsburgh, Pennsylvania, who’s been living with severe asthma since she was just 4 years old.
7. Asthma is not just a childhood condition that everyone outgrows.
Like Sommer, some people do outgrow childhood asthma or have much milder symptoms as adults.
For others, symptoms persist into adulthood. Imhoff says, “I was diagnosed at age 4, and as I got older, my asthma actually got worse instead of improving. I don’t remember not worrying about it.”
And others won’t develop asthma until they’re well into adulthood. O’Neal was 40 years old when she first experienced symptoms.
8. Having an exacerbation is tiring, and I’ll need time to recover.
An asthma attack can land you in the hospital, and recovery can take awhile.
During that severe asthma attack that put Imhoff in the hospital, she couldn’t do much. “I couldn’t even walk around the nurse’s station without them having a wheelchair behind me because my oxygen level would drop so low. And I was 26 at the time.”