Lessons learned from asthma therapy

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.

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  • Tom Fitzsimmons

    Asthma was not a diagnosis my mother would accept. In the 60s it was assumed the patient was psychosomatic, probably due to a neurotic mother. Only after my allergies became life threatening later in life did I realize how much the exercise induced asthma had shaped my life and how obvious the symptoms were. An interesting episode in all of this came in Navy boot camp. After immunizations for everything that they could think of I was able to run the 5 miles in 24 minutes that was required to graduate.

  • http://diabeticallymindnumbing.blogspot.com/ SuFu

    That is an amazing list. As a life long asthmatic with food allergies and now a type 1 diabetic it really hit home. Great post!

  • http://doctorstevenpark.com Steven Park, MD

    Dr. Mavromatis,

    Just a wild guess, but I’m willing to bet that you can’t sleep on your back, or you prefer to sleep on your side or stomach, right? Do either or your parents snore heavily? Do you have cold hands or feet? If none of this applies to you, then it’s a moot point. But If you have many of these symptoms, there’s a simple explanation that not only describes your lifelong history of asthma, but has significant implications for your future health.

    SuFu, this may also apply to you as well, in light of your diabetes.

    http://doctorstevenpark.com

  • http://healthforhumans.blogspot.com Murfomurf

    Hey Dr M- you sound like me, but a decade later! I had asthma, eczema and various allergies from very early in life and decided I wanted to study medicine because doctoring was the only role model I had seen a lot of! In and out of hospital, ambulance trips, noradrenaline/adrenaline injections, blue lips, pneumonia, pleurisy, physiotherapists, postural drainage but no steroids. Of course I was just “putting it on” as far as the young country GPs were concerned- and my mother WAS neurotic- but it didn’t have anything to do with my asthma- I inherited it from my father. I continue to have trouble with doctors refusing me antibiotics when I have upper or lower respiratory symptoms besides wheezing. It has caused me to become quite ill during the past 5 years, in contrast to the time when I was given prescriptions to get filled when I thought an infection was beginning! I’d love to go back to the days when I was listened to, given credit for knowledge of my own health and not made to suffer for days or weeks before I get what I need! Being in my late 50s, it is getting quite frightening to think I may have to fight for health care even harder as I age, when becoming ill may be much more serious for me. Oh yeah- I didn’t become a doctor- I had too many illnesses in my first 3 years of university and decided to take a year off to consolidate my health. Then I realised I shouldn’t subject myself to the stress and possibility of further infection and did something entirely different. Please educate your peers and young doctors coming through the ranks to give us some credit for our experience and intelligence!

  • MIS Prof

    Great post. I have found the same thing in dealing with my husband’s asthma. He was recently forced to change his inhaled medication (manufacturer stopped producing it), resulting in a big jump in respiratory infections. Luckily, our current family practitioner is willing to call in antibiotic scrips on request. He sees the pattern and trusts my husband that if he asks, he really needs it.

    I saw the same pattern of responses in dealing with endometriosis back in the 60′s and 70′s. When doctors couldn’t find anything wrong, they decided nothing was wrong. (‘You’re healthy as a horse, girl. Quit bothering us.’) It took a huge pelvic mass for them to change their tune.

    I still find the same pattern of responses from the medical community with fibromyalgia. Seems that a majority of doctors still think fibro is all in the head. If I would just exercise and chill out, the ‘condition’ would resolve itself. Certainly, I am more up on the latest research than the majority of my doctors; with a Ph.D., I can find, evaluate, and use research better than the average non-MD patient. Only my sleep doctor can and will banter research with me, Dr. Park. (And I do know that sleep issues are a huge factor in fibro.)

    Thanks for providing the pointers about dealing with chronic illnesses. I wish doctors could educate and police their own better … not that the professoriate is any better … sigh. ;-)

  • Jo Ann

    Reading your story was like reliving my childhood all over again. I did have an excellent allergist but the medications did not exist. I was on prednisone back in 1955 when it was 50 cents a pill. Alot of money back then. I always felt guilty for the money my parents had to spend on me. I still have asthma, well controlled now. Did just have to do a round of Prednisone with the latest “bug”. That doesn’t happen often. I agree the antibiotics are hard to come by.

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