How many times have you had a really bad asthma flare, but had serious trepidations about going to the emergency room for treatment? How many times have you felt guilty that maybe you weren’t sick enough to be admitted to the hospital?
Well, that’s pretty much been the case for me for as long as I can remember. This, despite the fact that Ive become critically ill on more than one occasion, because I waited too long to come in for treatment.
Why do so many chronic asthmatics suffer from low self esteem or feelings of guilt? Why do we often deem ourselves unworthy of emergency care when we truly need it? Why do most of us procrastinate going in for treatment, when we know that the earlier we get in, the better the chances are of reversing a flare up before it gets out of control? Why do so many of us feel guilty or even ashamed and embarrassed about having asthma?
You don’t see people with cancer or other serious medical conditions delaying treatment because they don’t think they’re sick enough. So what makes us so different?
I think it was Dr Wenzel who told me, that this strange behavior is actually quite typical among asthmatics.
Where does all this psychological crap that we pile on ourselves come from? For me it seems to have started in early childhood.
I grew up at a time in the 1960′s and 70′s where ignorance about this disease was rampant. Asthma was considered more of a nuisance illness than a serious medical condition. There was this notion that asthma was a result of weak genes that one would inherit and that there was nothing you could do about it. There was virtually no patient education or preventative care available at the time, and what little was known about the disease turned out to be mostly incorrect. My doctor at the time smoked cigarettes!
There was one incident in particular, that I think really messed with my head. It was an asthma exacerbation I had when I was 14 year old. A mild asthma attack, that almost took my life!
Here’s a little bit of what I remember….
I had been feeling short of breath for several days and none of my medications were working. My Mom had decided that I should probably go to the Emergency room for treatment. We didn’t own a car, or for that matter a working telephone, so the only way I could get there was to take the bus. My Mom wrote a letter for me to give to the doctors giving them permission to treat me, and then sent me on my way.
When I arrived at the hospital I was still able to walk, but I could barely breath. I remember going up to the ER desk and handing the Nurse the note my Mom had written. The intern on duty, a young dude ( we’ll call him Dr. Meany #1) walks up to me and asks “What’s the problem here?” I tell him that I’m having a really bad asthma attack. He rolls his eyes, starts laughing and says…. “That’s like telling me you’re having a heart attack!” “You don’t look like you’re having an asthma attack!” He then listens to my lungs with his stethoscope and says… “I don’t hear any wheezing– you can’t be that bad”. He then orders the nurse to put me in one of the rooms and to give me some kind of injection. The next thing I remember, is waking up in the intensive care unit with a tube shoved down my throat and hooked up to respirator. Less than 30 minutes after being laughed at by the ER doctor I had gone into full blown respiratory arrest while inside the hospital’s elevator on my way to have a chest xray done. (Due to the statue of limitations on the retrieval of medical records, I was unable to ascertain whether I had suffered a cardiac arrest as well.)
A couple of days went by and I was eventually extubated and moved to a regular room. The nightmare however, did not end there. I remember complaining to the nurses that the medicines they were giving me, were making my heart pound and making me nauseated. The next thing I know, another doctor, whom I had never seen before, enters my room and starts yelling at me. He actually starts blaming me for being sick “This is what happens when you don’t take care of your asthma! ” “Why did you wait so long to come in for treatment–You could have died!”
I remember I started to cry while he was scolding me. (Have you ever tried to cry when you can’t breath?)
That’s about all I really remember about that hospitalization, but I know now that it had a profound effect on how I would deal with my asthma in the years that followed. After that incident I would always delay going to the hospital when I got sick, for fear of being ridiculed, laughed at or not taken seriously. I found myself continually raising the ER bar if you will, to higher and higher levels. I would only go to the ER for treatment, if I “looked” sick enough. Even today, 40 years after the fact, I still catch myself trying to hold off from going to the ER until I’m on deaths door, because I don’t want to burden people. How crazy is that!
As for those mean doctors, I can only guess that Dr.Meany#1, had never witnessed a stoic asthmatic child in the middle of a severe flare. The reason I wasn’t wheezing, was because I wasn’t moving ANY air. Hopefully he learned from his near tragic mistake, that not all severe asthmatics act the same when they’re in respiratory failure.
Dr.Meany #2, was probably just annoyed from being called in from home during the middle of the night to treat a patient who had no medical insurance. Or, maybe he was just a jerk. Who knows… All I know is that his comments made me feel like I was a worthless piece of s**t and that my asthma was placing a burden on others.
It’s taken me nearly a half a century and a lengthy career in Respiratory Therapy to finally realize that it’s NOT MY FAULT that I have this disease. Bad things happen to Good people all the time. I think in my case, I was just born at the wrong time in history. I can only imagine how awful it must have been for some asthmatics who were born prior to the 1950′s…. It’s amazing anyone survived!
Thankfully, times have changed for the better now and asthma is receiving a lot more attention. Hospitals and Emergency rooms are much better equipped and the staff much better trained to deal with asthmatic patients. The ER I go to now (UCSF) is excellent. All patients with asthma symptoms are triaged the minute they come though the front door and are given priority based on severity.
My advise to those asthmatics who tend to procrastinate in seeking medical care, for whatever reason, is to figure out why you have these irrational feelings and work on fixing them. If you don’t already have one, get together with your health care provider and devise an asthma action plan that spells out exactly when you should come to the hospital for treatment. If you find yourself not feeling right, but not quite sure if you should go the the ER, just go in. With asthma it’s always better to err on the side caution, even if it means a brief prison stay.