"So, I Have Asthma?"
The way you are told about an asthma diagnosis can dictate your outlook on your disease.
In my experience, this can either inspire the creation of spirited and engaged patients, or lead to feelings of isolation, confusion, and sadness. Meanwhile, the path that we choose as patients is up to us.
Reflecting on my diagnosis
I know that this has certainly been true for me. When my family physician mentioned that I had asthma, I was in complete disbelief. At the time, I knew almost nothing about asthma, other than it commonly happened to children, that I had a good friend growing up that had it and people used blue inhalers.
When I saw my first specialist, he mentioned that this would be a life long and that it was manageable, although it was not presented with an optimistic outlook. This led to feelings of me not feeling that I would get to a place of being well managed, I knew very little about asthma but I did not get the impression this was something that I wanted to have.
Asthma diagnosis and management go hand-in-hand
I feel that there needs to be more emphasis on understanding what an asthma diagnosis means, especially at the beginning. We need to do better for patients than just having inhalers prescribed (with maybe a pamphlet). I didn’t know there were options, tests, that should be demanded outside of symptoms reviews or even that there were different types of asthma.
If I knew then what I know now, I would have demanded that I had the data that went along with my diagnosis, more than spirometry but full PFTs. That we didn’t wait so long for a methacholine challenge, that we talked about the direction of asthma research.
Treatment education should be the norm
I felt like my adult diagnosis came on the cusp of the wave of biologics. I sometimes wonder if there were other treatment options that we should have tried sooner. While I am not able to go back in time, I do hope that physicians can be more cognizant of how diagnoses can be delivered with the whole patient in mind. Since patient journeys are more marathons than sprints, would it not be a good place to have an excellent start?
This had me thinking about what kind of information I wanted with my diagnosis. I was in denial, so I wanted proof. This request was a bit brushed off. I think every diagnosis should come with this explanation.
There was very little information about what may be causing symptoms. I felt that the more information that I had about what was causing my symptoms, the more likely I was to understand my asthma, be compliant with medications, and be on top of its changes.
Was your diagnosis similar?
How do you want to be told about your diagnosis? What would make the whole situation easier to digest? Why are these overviews with diagnosis, not more prevalent? Have you had a positive diagnosis? Share in the comments below or tell your story to the community!
Do you get muscle cramps caused by your asthma medicine?