Personal Research - Yay or Nay?

Living in a digital era, we have access to a plethora of information. While this opportunity sounds nothing but positive, there are some pros and cons to technology right at our fingertips. This is especially true when it comes to living with chronic illnesses.

Learning the ins and outs of pulmonary diseases

I have a love for learning about pulmonary issues, particularly when they relate to my lungs. Part of this is because I value bodily autonomy (and might be a hint of a control freak...), but a larger part of it is because of my interests. I am a pre-medical science nerd and I have found a specific area of interest in the respiratory system. I shadow pediatric pulmonologists, I am an intern in a pulmonary research lab, and I have plush lungs in my room. I think the lungs are pretty cool.

When I was a young teen and a pediatric pulmonary patient, I was never given a lot of information. I did not officially receive an asthma diagnosis until I was 13 years old, so naturally, I had some questions. At this point, I wasn't educated enough to know which questions to ask, and (thankfully) I did not have ample access to the internet, especially to reputable sources.

More questions than answers from my research about asthma

When my health started truly going downhill around 4 years ago, I became increasingly less satisfied with my diagnoses, my regimens, and my answers. This was when I started learning about the human body through taking my first Anatomy and Physiology courses, and it just so happened to be during the shutdown period of the COVID-19 pandemic. What a perfect storm.

I started with easily accessible websites that contained bite-sized information. Think of the first page of results on your search engine after typing in words such as "asthma," "inhaled corticosteroid," and "bronchoscopy."

As with many people who turn to Google for their medical advice, I felt like I had every disease under the sun. I was convinced I needed obscure panels of testing, needed to try every medication listed, and should see every specialist who others had success with. Coupled with the rapid deterioration of my lung function and quality of life, I was in a vulnerable place.

At first, I was apprehensive about mentioning any of my findings to my providers. After all, I was a teenager who had not even finished high school. When I did work up the courage, my personal research prompted me to ask my providers about many different tests, diagnoses, and medications that were not all that applicable to me. I was repeatedly crushed when it wasn't an avenue that my doctors thought would be fruitful to pursue, so I searched even further for answers. Eventually, I got established with a fantastic pulmonary and allergy/immunology team that I genuinely trusted.

Knowledge is power

My personal research about asthma then became rooted more in curiosity and my love of learning. After all, I do want to be in the same role one day as the doctors who treat me. The first page of Google turned into peer-reviewed articles. My outstanding questions were answered through experiences interning in a pulmonary research lab. All in all, I began to have a little more faith in my providers and a lot more faith in myself that it wasn't silly to speak up for what I thought was important.

I truly believe that we as patients have the right to educate ourselves and ask providers any questions we may uncover. I cannot help but notice that many of the important tests and the most beneficial medications were often ones I pondered before my provider mentioned them. One thing I know for sure is that when you have a good team, no question about your health is dumb. But most importantly, a good team allows you to trust, so you can quit trying to be the patient AND the provider.