Living With Asthma, New Frontiers

What does living well with asthma mean to you?

I have been struggling with what living well with asthma means to me. I set out on an adventure of researching patient phases in chronic illness, and I love the John Hopkins Medical Centre outline of Chronic Illness Survivorship.

"Chronic disease survivorship includes diagnosis, treatment, and time after treatment. Throughout survivorship, there is a focus on the quality of life."¹

I am very curious about why there are not more studies on its application in chronic illness. I found a few but not as many as I thought I may encounter. There is an identification of survivorship within cancer, however, I did not find much data outside of cancer, and I think this could be valuable for the asthma community. One of the major differences that I see, is that asthma treatment is usually lifelong as opposed to being finite. In my asthma journey, I have been through many peaks and valleys. After making little progress or spending so much time just trying to live with severe asthma, I had lost sight of the possibility for improvement and that I may be able to regain some form of my old self and achieve new goals. I also felt a bit of a patient identity crisis. I am not cured but better than I have been. This left me unsure of where I go from here.

As good as it gets?

At a recent follow-up appointment, my specialist mentioned that I was "as good as it gets." What does "as good as it gets" even mean? I was left completely perplexed when faced with this. My specialist quantified their statement by explaining the physiological and lung function improvements that I have made and that my specific treatment plans are working. I had many questions about this, for example, the three days a month that I was losing to exhaustion from the treatments and the fact that I still had not seemed to find my physical activity groove, which is important to me. This all overshadowed the joy that I should have been feeling from this improvement. The only caveat was that the years of oral corticosteroids have taken a toll on my body and there is a lot of recovery and working my way back that is going to be needed. I certainly felt grateful for the improvements but I also felt so unsure of what I was supposed to feel.

My plan for living well with asthma

While I wasn’t exactly cured, had I been given a new lease on life? How do I sort through these feelings? What supports are available to sort through all this? My game plan was to take this unexpected win and my grief for not knowing if this would be short-lived, not knowing if good enough really meant that I would never be any better than this, and find some positives in this situation.

My first plan of action was to connect with a therapist who had helped me through some other parts of my illness and work through the mental components. Next up: doing the scary and hard things, lifestyle modifications. I missed my once athletic body and it was time for the hard work of physical therapy and personal training to see if I could develop more strength and endurance. I have also worked on setting new goals, for this new phase of living with severe asthma. There is still this pesky pandemic thing so it may be a while before travel plans or big adventures come into play. I know there will be lots of ebbs and flows to navigate.

What aspects of quality of life support do you wish existed? What helps you navigate your treatment or when transitioning to different treatments? I would love to know your thoughts.