Picking Yourself Up and Carrying On
Like most things there is an ebb and flow to patient life. The heterogeneity of asthma, means that we are not all the same or experience the same things as patients. For example, how have we changed since our diagnosis? Where do we begin with diagnosis or understanding asthma? How do we navigate our healthcare system? Are we confused about our medication?
In a race to figure things out after asthma diagnosis
At the beginning of my diagnosis, I thought I was in a race. I am not sure if the race was to a destination that I had in mind or a particular finish line but I felt like I was always running. Running to figure out what was wrong with me, running to find a physician that wanted to be in this race with me as a coach and as a partner, running to get ahead of my asthma. There were times that I felt at complete peace with the disease. That I was in control and that I could manage my symptoms, that I knew what to expect. Of course, there is always a wee bump in the road. Like tripping over your shoe laces, that you thought were perfectly tied during a race. As patients, we stumble but we get back up. I think one of the greatest attributes of being a patient is that we are amazingly resilient, even when we don't think we can be. I like to think of us as Jedi's always prepared for battle.
An asthma setback
I have had a bit of an asthma control set back. My run of being well controlled was coming to halt. The familiar symptoms were starting to creep back in and I was not sure why. Was it a dreadful summer cold that was creeping in on me, or was I no longer controlled on my new regimen which allowed me to decrease my oral steroid. I was hoping it was a little cold and I would be soon back to my old self. Unfortunately, it turned out to be just a good old episode of asthma. I felt so deflated by this but I had to remember that asthma is EPISODIC, this will not be like this forever, I can and will improve.
I pride myself on being able to advocate for myself, however sometimes, I get myself into knots when it comes to managing my care or standing up for myself, especially when I have had 30 seconds in an exam room to be able to process new information. I have to quickly switch into the advocate role and ensure that I can “reach” my doctor as a patient advocate. Did you know that patient empowerment has four fundamental components to the process? They are
- understanding by the patient of his/her role;
- acquisition by patients of sufficient knowledge to be able to engage with their healthcare provider;
- patient skills; and
- the presence of a facilitating environment.1, 2
I generally feel that I have met these components and sometimes it is just about mustering up a bit of courage to ask for more information or more time to process new situations before accepting treatment changing or diagnostics.
What are your patient empowerment stories? I would love to hear them.
Have you ever gotten "moon face" as a side effect of prednisone?