Living Positively (Even with Asthma): Adjusting to a New Diagnosis
As I shared in my Ten Things I Want You To Know About My Asthma video, I try to live an awesome and intentional life despite having goofy lungs. After all, my asthma is an uncontrollable circumstance that may, of course, have a bit of a ripple effect on my life, but, it should not have the power to change the things I do have control over. How I see my world and feel about things (including my asthma) are things that I very much have control over—as I said in the video, “I don’t have a choice that I live with this disease, but, I have a lot of choices otherwise.”
Choice, positivity, and chronic disease are three subjects my friend Jay and I have had a lot of great conversations relating to over the years. I was diagnosed with asthma in 2008, Jay with Type 1 Diabetes [T1D] in 2011; I was in high school, he was completing his PhD: an incurable, life-altering diagnosis can happen up at any point… to anybody. For both of us, life has looked a bit different following our own respective diagnoses of chronic health chaos (chaos being the best descriptor for our own personal mazes of diagnoses!), but in no way has life stopped: it is a life sentence, not a death sentence! We are still here to figure it out—or, as Jay once said “It’s life changing, not life ending."
I often find friends in “unlikely” places—and I love this aspect of my life. In September 2011, mere weeks after his T1D diagnosis, Jay was back home after years of school in the US, and teaching my Physical Activity: Promotion and Adherence course—navigating two variations of his “new life” at once. Chronic illness may change how we do things, but it doesn’t have to change the course we’ve set for our lives—nor should we let it!
That said… there is adjusting to be done to any new diagnosis—not just in the things you do to deal with whatever is going on in your body—whether that’s dealing with your lungs overreacting to air or taking over the complicated job of shooting up insulin that your pancreas has just decided to quit making (as in type 1 diabetes)—but also the 70,000 things floating around in your brain about your new reality as a “patient” with a chronic disease1 (I’m, personally, more of an impatient!). I was sixteen when I was diagnosed with asthma, and it probably took me a bit longer to decide “I’m figuring this out, finding that coexistence, and moving forward,” than it took Jay. There’s just one of many nuggets of truth in there: we all will take varying amounts of time to figure our diagnosis out and lose the vice-grip of our diagnosis on our minds, but, it’s something that has to be figured out. Coexistence will look different for everybody. To me, it’s not just adjusting to the diagnosis, but also living positively, and determining what you can do to not just live life with asthma, but live an awesome life.
Since his diagnosis, Jay has added a chapter to his book, My Choice, My Life - Realizing your ability to create balance in life, about dealing with chronic illness, or supporting someone who is. (By the way, this book was not required reading for my course with Jay, and yes, I bought both the original and updated versions—and recommend it!). These are my three favourite take home messages from Jay’s book about dealing with a new diagnosis—whether that is asthma, or something else—with my own commentary1.
- Take time to figure it out. Just like you can’t read the entirety of the internet in one night (though the endless web of Wikipedia would like you to believe it), you can’t figure out your whole life with a new diagnosis—which sometimes leads to a new reality—in a day. It may take days, or weeks, or months. It’s a process that isn’t great to ride through… but ride the waves. People, like surfboards, might help make riding it out a bit more tolerable when you’re getting tired. Jay notes, too, that it’s important to sort through all the emotional components of your diagnosis, but without allowing these things to become controlling1.
- Take time out. Riding the waves all day—for days on end—gets tiring. I hear ya. Step back, take a break from it if you need to. You might have to go through the motions like taking your meds, and nothing asthma-related (or chronic disease related) beyond that. Whether it’s an hour or a day in bed, or a day just stepping away to a place with good vibes like the beach (to go along with the surfing analogy) or library, do what you need to do on the rough days… and go at things fresh tomorrow.
- Get help if you’re stuck. Your doctors, health educators, clinic nurses or hospital should have great resources available if you’re feeling stuck adjusting to your new diagnosis. If you feel like your friends and family don’t get it—and it’s tough to—there are professionals who do. Adding a psychologist, therapist or counsellor to your team can help you learn to navigate both what you’re dealing with health-wise, and how you’re feeling about it1.
Asthma sucks, for sure, but our entire internal dialogues about asthma need to move beyond it sucks—we know that already! It may be tough to get to the point where you feel as if you have any choices involved in having asthma. The disease itself is not a choice—but it doesn’t mean your “old life” is over. It’s not sunshine and rainbows, but the sunshine and rainbows still exist if you take time to step back and realize that while your life may have changed, you’re still here, and so is your pre-diagnosis life. In my own experience, I find I’m actually healthier because of my asthma—I pay better attention to my body and what it needs, and without asthma, I wouldn’t have conversations like the ones with Jay that encourage me to ponder my life—and thoughts, and how I come to form those thoughts—like I do now. Asthma is not easy to adjust to—but your life can be just as full, if not fuller, with asthma in it.
Have you ever gotten "moon face" as a side effect of prednisone?