It Takes a Village: My Care Team is My Best Asset

Doctor-patient relationships have always been interesting experiences for me. They have been a mixed bag; some have been good, others have not been as good. I have also had some that have been incredibly frustrating. These relationships are just one part of the patient experience.

Working through the frustration

At the beginning of my severe asthma diagnosis, I had not had any experience with chronic illness or in working with doctors or medical teams. I initially found the experience very frustrating. I did not know how to navigate it. I was overwhelmed and discouraged. I have learned a few things since then.

There must be mutual respect between the doctor and patient. This can be challenging as there may be significant ego involved on both ends. While my doctor is lovely and brilliant, they have not always been a good listener. We did have a strained relationship at times, largely around “can you hear me?” and “are you listening?” issues. I am happy to report that we have mostly worked through issues, although it took some time and a lot of understanding. Even with our bumps, we have had some meaningful moments in our journey together.

Different experiences with different providers

One of the most powerful experiences I have had is a care team that has taken a vested interest in my case. I went through a lot of the initial, "is it asthma” and it will just take a bit of time. I wasted a significant amount of time with physicians that were not that vested in me. They said they were but they just wanted me to agree that they were.

In one particular experience, a doctor told me they were there for me, however, they refused a test I requested because I was not an expert. I knew that would need to be the end of that particular relationship. I then found a team that was committed to my care during good times, but also frustrating times. This taught me a valuable lesson about perseverance and not giving up hope.

I seemed to have one of those diagnoses that made sense but was not responding to usual courses of treatment. It was frustrating for me, but also for the physicians. I am grateful that my team pushed for what seemed like any test remotely necessary, developing a multidisciplinary team, exploring improvement, quality of life goals, and not just being solely focused on medications. This approach to treating me like a human and validating me in my care has been invaluable.

My current asthma care team

I do still have some quirks in my diagnosis and some undetermined mechanisms driving my asthma. Getting to this stage would have not even been possible without a team that pushed outside the box, collaborated with other specialties, respected my experience, and valued me as a team member. In my opinion, it is extremely important that there is mutual respect and to be one team. It can make weathering the difficult times a lot better. My journey has not always been easy, not every idea has worked, however, we have always had a one-team approach, which has made difficult conversations a lot better.

Even when I did not always feel like I could keep continuing with treatment options, I knew that my team would be receptive to my concerns. Standing side by side with a patient is essential.

How have you built your care village? What parts have you found are essential? I would love to hear about your experiences.