May is asthma awareness month, seeing as you’ve found yourself on an asthma.net I assume you’ve heard of it. When I mention asthma people give knowing nods and often start into a story about their second cousin’s former roommate’s ex-boyfriend who had the “bad kind” of asthma. I would say that we can probably check awareness off our to-do list. People are generally aware of what asthma is and how it affects the body.
Asthma awareness disconnect: what asthma is really like
The disconnect seems to be in truly understanding the experiences of people with asthma. I don’t need sympathy or pity, empathy, on the other hand, is wonderful. My lungs and my life are unique to me and that’s ok. I don’t expect anyone to understand as if they’ve walked a mile in my shoes. Just pausing to think before you open your mouth about my health goes a long way.
Yes, I am at risk for asthma-related death, I’m well aware, I don’t need a reminder of this fact.
I don’t know that I have the “bad kind”. Is there a good kind? It’s complicated. I would say I have the mediocre kind, I am not a frequent flyer at the hospital or clinic but I also don’t forget that I have asthma.
Yes, I can do [activity I’m currently doing]. Even if I’m not making the best choice, I’m an adult who is allowed to mess up my own life and make my own mistakes. I don’t appreciate parental style concern from random strangers.
I lead an interesting and full life, the kinds of limits asthma puts on my life are acceptable to me and my care team at present. Would I love to live in a world where I can ride with fast paced bicycle groups in peak allergy season? Sure! Do I think it’s reasonable to call that a “normal” daily activity? No, not really. Am I still able to maintain an active lifestyle the vast majority of days of the year? Yep.
It seems like people either get it or they don’t. Those who are great at empathy often have their own challenges in life. People who get it, just do and it’s wonderful. I appreciate being viewed as a complex human, where asthma is just one small piece of who I am. I don’t appreciate the same questions over and over again. However, I hands down would rather have you ask than stare or treat me like I’m frail and fragile. I am happy that my inner circle cares enough to ask about how I’m doing. Understand that if I’m having a rough go of things with asthma, I may not want to get into all the nitty gritty. Learning to roll with life with chronic illness is challenging. Thankfully, this season of life finds me with vastly more well days than ill days. For me having people who care enough to ask while not pushing to overshare is how I best feel supported as an asthmatic. How do you wish those in your life understood your asthma? How do you understand the asthmatics in your life?