Lessons learned from asthma therapy
by Juliet K. Mavromatis, MD
As a kid I had allergies and asthma.
Because of this, for several years, my mother wrote a note excusing me from the 600 meter run in elementary school. My father took me to weekly allergy shots. At times I had eczema on my forearms and eyes, and according to my allergist, whose notes I later read, I had moderate allergic shiners (also known as dark circles under my eyes). My allergies led to frequent nosebleeds, which got me sent to the nurse’s office in school. Some nose bleeds were bad enough so that I was sent home from school. For years I was in and out of doctors’ offices frequently, when my attacks were severe enough to require treatment with epinephrine injections to afford me some relief. Otherwise, I remained perpetually wired on a daily cocktail of theophylline, Dimetapp, and an occasional albuterol tablet. Despite all of this I tried hard not to be a complete dweeb.
I remember the doctors wanting to put me on oral steroids, which my parents refused. Maybe we were “difficult” patients. My parents were concerned about the long term toxicity of steroids, particularly the possibility of stunting my growth. Perhaps they thought I had a career ahead of me in professional basketball (I am now 5 foot 10 inches). We learned that I frequently would require a course of antibiotics after I became sick with a virus. As doctors became more cautious to avoid antibiotic overuse, our insight about this frequently met some resistance by those who were not familiar with me.
When I was thirteen I was admitted to Mott Children’s Hospital in Ann Arbor, Michigan. I shared a room with two other girls, one from the Upper Peninsula of Michigan, who had some sort of intestinal issue that had required her to have multiple surgeries and hospitalizations. The girl in the bed across from me had anorexia. I remember overhearing intense discussions with her parents and being perplexed about all the talk of food. My illness seemed pretty minor in comparison.
Asthma therapy has changed a lot since the 70s and early 80s, but some of the experiences of being a patient and having a long term health condition remain the same. It was my good fortune to have had an illness that, for the most part, has resolved. Although, it still seems that I am allergic to most living things with fur, much to my children’s dismay. After spending a year living in Brazil and going through a late puberty, in high school I stopped my allergy shots and discontinued most of my medication.
Asthma has played a minimal role in my adult life. Only occasionally do I use my albuterol inhaler before I run. However, having had this illness experience has taught me a few things about caring for patients, and likely contributed to my decision to become a doctor. As a child I remember feeling guilty about my allergies, as if somehow they were volitional, or that I was deliberately trying to get attention by inventing health issues that excused me from participating in various kids’ activities. In retrospect, I am glad that my parents were” difficult” at times, refusing steroids and insisting on the antibiotics that they learned from experience would help make me well.
Here are some of the lessons that I learned:
1. People with chronic illness may feel guilty about the social effects of their illness.
2. People with chronic illness may feel that they are to blame for their illness.
3. Our current culture of personal responsibility may not be helping those with chronic illness with these perceptions, and may lead to increased depression and social isolation in those who have chronic illness.
4. Difficult patients should be listened to and usually bring up valid points.
5. Allergies are not volitional.
6. Patients with chronic illness frequently understand their health conditions better than doctors do.
7. Chronic illness care is more effective in the context of a long term collaborative relationship with one’s personal physician.
8. Family pets are hard to get rid of.
Juliet K. Mavromatis is an internal medicine physician who blogs at Dr Dialogue.