Asthma Anniversary Reflections

I have an upcoming asthma anniversary which made me think about how far I have come and what a weird and wacky adventure my severe asthma journey has been. If you had asked me 13 years ago about my asthma, my response would have been, “What asthma?”

If I take a look back at some of my milestones that I have gone through, they have ranged from getting through diagnosis, accepting the diagnosis, figuring out what severe asthma was about, treatments, different treatment, treatment failures, managing expectations, a whole array of comorbidities and changing who you are. This led me on a path of being an informed patient and advocate.

Asthma lessons learned

Looking back, the diagnosis had to be one of the most difficult parts. I just thought it was bronchitis from a viral illness that seemed to go on for a really long time. After my breathing was not improving with the conventional bronchitis treatments, steroids, antibiotics, and a few trips to the doctor, I knew it was a different scenario. I honestly did not consider asthma as one of the things it could be.

I was really naive about my asthma experience. My understanding was limited to a friend’s experience and rescue inhaler usage. I had no idea how heterogeneous or life-changing asthma could be.

I still struggle

There are still days that I struggle with diagnosis or having asthma. If I could, there are days that I would stick it in a closet and not look back. One of the most valuable lessons that I have learned is that I don’t have to think about my asthma all the time and, with good control, I don’t even have to be aware that it is there. It is part of who I am but I try not to let it define me. 

I learned so many lessons through going through asthma diagnosis, how to take effective appointment notes being one of the key items. I wish I had taken the diagnosis more seriously at the beginning. I thought a rescue inhaler was going to solve all my problems. (Remember, I said I was naive.) I thought it was less complicated and I didn’t probe for more information or learn more or learn how I could take more control. I would have that part of diagnosis very differently with the knowledge that I now have.

Discovering the new me

I went through a bit of an identity crisis. I felt like I had lost the person I was. I was very physically active, but when I was first diagnosed and became quite ill I had extremely low lung function and activity limitations. I didn’t know who I was without those aspects of my life. What I know now is that I can do most things, just differently, and with different levels of intensity, but it is still part of who I am.

I have also learned that there are new parts of me that I would not have discovered without this diagnosis, for example, my keen interest in research, patient advocacy, and helping other patients. Some of these developments have been driven by hoping that others don’t experience some of the pitfalls that I had experienced and want to change that landscape for patients.

What experience have you learned from your asthma journey that you wish others knew?