Shame and embarrassment made Kamilah Howard reluctant to use her inhaler in public. In this article she talks about fighting the stigma attached to asthma, empowering others to support you, and advocating for yourself.
When I was first diagnosed with exercise-induced asthma, my feelings were mixed. I was surprised, nervous, and anxious, but most of all I was happy that I finally knew what was wrong with me.
It wasn’t until after I filled my prescription and read the instructions on my medication that I felt the anticipated stigma associated with asthma. As I re-read the instructions on the prescription package, I realized that I would need to take the medication right before I exercised — and that meant taking it in front of people.
This may sound silly, but I’d always thought about treating and managing my asthma as this intimate thing. Now, enter stage left: Every person who happens to be around before I exercise will visibly see my chronic illness.
For a while, I tried to hide it by going to the bathroom or using my inhaler tucked behind my locker, or I’d try to wait until the last minute when I thought nobody would notice.
This may seem odd now, but at the time, the stigma felt incredibly real and highly stressful. I knew I needed to manage my condition, or my asthma might flare up. But I also wanted to fit in and appear “normal”.
Then I started to question myself. What exactly did I define as being normal? Living disease-free? Running without my chest tightening? Breathing easier during allergy season?
Over the years, I figured out what normal looked like for me. It turns out, living with a chronic disease doesn’t mean I can’t feel normal. In fact, chronic diseases are more common than you might believe. And the truth is, “normal” may look different for everyone.
You’re not alone
Many, many more people than you probably think live with one or more chronic conditions, so you’re not alone. In fact, according to the Centers for Disease Control and Prevention, about 60 percent of adults living in the United States has a chronic disease. That includes airway diseases such as asthma.
Asthma can be managed with a treatment plan and other preventive action. That’s something to celebrate and to embrace every day. That doesn’t mean that managing asthma won’t get tough sometimes. It does mean that you have a path forward.
I think everyone needs reassurance about being accepted. A few weeks ago, I was getting my things together to head to a class at a cycling studio. As part of my routine, I took a puff of my inhaler and stuck it back in the side compartment of my gym bag.
A woman standing next to me said, “Hey, that’s awesome that you’re able to do cycling with asthma. I always worry that my sugar might drop too low since I have diabetes.”
It was a little awkward at first but I could tell she was just making conversation. In some ways, her honesty was pretty refreshing. It was a great reminder that I’m not alone when it comes to managing chronic illness.
Stigma affects your quality of life
A 2012 study published in the journal, Chronic Illness examined how anticipated stigma can undermine quality of life for people living with a chronic condition. Anticipated stigma may be related to interactions with friends, family, or work colleagues.
You don’t necessarily have to experience stigma firsthand — such as through prejudice or discrimination — to feel the negative effects. Instead, you might merely worry that you’ll experience stigma. You might avoid socializing and experience stress among other issues.
I used to feel like I was walking around on eggshells, never knowing if my asthma would flare up. It’s hard to feel worried that people might judge you for something you have no control over.
Realizing that you’re not alone is a good starting point. Over time, I found that I was less worried about people judging me. And for me, the next step was realizing that people around me could actually make living with asthma easier.
Empower others to help you
I had always wanted to keep my asthma solely under my control — but that’s not always possible in an emergency. It took an incident at work for me to realize that it’s better to empower people to help me, so that they’re ready to jump in, if needed.
A couple of years ago at work, I started to have uncontrollable asthma symptoms. I was feeling immensely short of breath and could barely speak. My manager at the time knew I had asthma and was able to help me get to urgent care. I needed a breathing treatment to help me.
The fact that she knew what was happening was amazing. Consider whether having a short conversation with those around you might help you feel less stigma, improve your quality of life, and help you cope better in an emergency.
You’re your best advocate
I think most people have an ideal version of their quality of life, whether that’s having the ability to go on a hike, running after their kids, or building a shed in their yard. Chronic illness can stand in the way of those things. It can make it seem like none of those hobbies are in reach.
I used to think that exercise was over for me. I thought there’d be restrictions to everything I did because asthma was a part of the fabric of my life. I laugh at those thoughts now!
While I may not be able to do everything, I can do a lot of things and that’s the perspective I’d encourage you to take. Through learning to manage your asthma, and working with your doctor, you can figure out what activities and hobbies are right for your life.
I don’t hide my asthma — and you don’t have to either. Consider what you need to find your new normal while living with asthma. You have an opportunity to reinvent yourself and define what it means to be strong and capable.
Take the approach that works best for you. Living with asthma is part of your story — it isn’t the ending to your story. If anything, it’s just one chapter in the book of your life. You can learn from it, and use it to guide you to your next adventure.
The information presented is solely for educational purposes, not as specific advice for managing physical or mental disabilities. Please consult a professional who can apply best practices and appropriate resources to your situation.
NPS-ALL-NP-00819 FEB 2023