Asthma guilt trip

Posted on Posted in Asthma, Asthma Education, Asthma exacerbations, Asthma hospitalization, Childhood Memories, People, Places and Events

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. Less than 30 minutes after being laughed at by the ER doctor, while inside the hospital’s elevator on my way to have a chest xray done, I stopped breathing all together. Turns out that not only did I have a respiratory arrest, but my heart went crazy as well and CPR had to be initiated. The next thing I remember, is waking up in the intensive care unit hooked up to respirator.

Anyway, 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.

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29 thoughts on “Asthma guilt trip

  1. Thank you so much for sharing your story. I used to go to the hospital for asthma attacks and for chest pain. Regarding chest pain I had a couple of doctors that were just telling me to stop coming in one way or another one actually asked me why are you here? same as asthma, my heart rate was so high once its very scary.
    about once every 3 months or so I get a bad asthma attack and i try to tough it out and not see a doctor , i dont like emergency rooms they take too long to see you and then you wait forever before you are released.

  2. Since I’m DNR/DNI and have seen those wishes not always honored in hospital settings, I don’t go to the ER. However, I will go to urgent care. Locally, they can do the stuff I’m okay with at urgent care, like IVs and corticosteroid shots/epi shots, etc.

    Many doctors are ignorant about asthma and then don’t listen to the patient. Although my symptoms have changed over the years, when I first got it I mostly coughed. One doctor evaluating me said, “will you quite all that coughing, I can’t hear if you’re wheezing.” My guess is he never heard of cough variant asthma. Also, I’m a statistical outlier in terms of spirometry. I used to work closely with statisticians, so know about descriptive statistics and the most appropriate thing to do in the situation of a statistical outlier would be to compare them to themselves. In fact, this is also what allergists I’ve seen through the years have instructed me to do. I’ve seen my current allergist for almost 10 years now, and once he expressed the concern that someday someone might think I’m okay because they are comparing me to the norms when in fact I’m not okay as I might be at 50% of my personal best, which is a medical emergency. In fact, this very scenario has happened in the past if the doctor is ignorant about asthma, does not listen to me, and doesn’t know me. So, what is boils down to for me is that even if I was a full code, I don’t see why I should go to treatment at a place where the staff sometimes are ignorant and don’t listen. My main problem in the past has been that I try to catch things early, but so many in the medical field only intervene once it’s late stage.

    I’m very involved in learning about the disease, and very actively involved in controlling triggers. I take the initiative for my own health and am not passive in my care.

    I no longer live in Houston, TX but when I did the allergists there were very concerned with overloading the ER. So, they had a number to call and said if they don’t call back in 15 minutes, then go to the ER. When I called that number, they would try to determine if there was something they could do that would control the asthma without having to send me to the ER, like phoning in a prescription to a nearby pharmacy. They also encouraged the use of urgent care. They were very good at educating me on emergency asthma management and gave me some prednisone beforehand, a nebulizer I could use at home, and a combination of albuterol and ipratroprium bromide for the nebulizer. They used guidelines the National Heart Lung Blood Institute gave which was very specific and based on response to rescue drugs about when to add in additional medicines, like prednisone. Under such circumstances, they said to use the nebulizer and do the first dose of prednisone before even calling their on call number. They got me a peak flow meter to catch the severe attacks early and were very emphatic about the need to start nebulizer treatment early and not to wait. They also gave specific situations when to not use their on call system and to go straight to the ER.

    The reason I mention this is that I was trained early on to use other avenues of care than the ER. Mostly, follow the action plan, call the on call asthma doctor, go to urgent care and use the ER as a last resort. That’s how the allergists in Houston dealt with it and I guess through the years I just got used to it.

    My current allergist knows me well, knows I’m actively involved in my care, I monitor things closely, that I’m pretty good at determining triggers and avoiding what I can, etc. He trusts me, so he just writes a script for the emergency drugs ahead of time and I do it at home and if that doesn’t work, it’s off to urgent care. The emergency drugs I have prepared at home ahead of time usually get me through the night alive, so the after hours problem isn’t a big deal.

    I don’t like doing the emergency management in front of others due to pride. I don’t like others seeing that I can’t even control the most basic of body functions, like breathing. It is humiliating to me. So, I am stealth if at all possible. If it’s not possible, then screw it, I just give everyone a show and pull out the nebulizer right then and there and if they don’t like it, then tough.

  3. As long as I’m getting the medicine in on time, I’m okay with being stealthy because a lot of people don’t understand asthma and don’t always respond in a helpful way. But if I can’t avoid it, then I go ahead and do it in front of everyone. I think if the general public were more understanding of what a severe asthma attack is it would make it easier for me to not be stealthy….still, I agree and it’s a better situation if I feel comfortable in letting the people around me know what is happening and if they respond helpfully. I remember several incidences when people have gotten in the way of me taking rescue medicines, though, or couldn’t understand why I had to leave since their cigarette smoke was triggering an attack. I normally still leave the trigger, but try to find another excuse if the person will not respond in a useful way. I’ve been fortunate lately in that I’ve met some people who do understand and who I can be honest with about what is happening and they’ll try to reduce the triggers as much as possible and ask if I need any more medicine. Still, it creates an ackward social situation that I wish I didn’t have to deal with, not to mention my pride. People oftentimes assume if you have asthma that isn’t completely controlled by controller meds that you have a psych issue and some will call you crazy or whatever.

    Also, just to be fair to the emergency room doctors in my area….it’s often the support staff that don’t triage well or have some ignorance. The ER doctors themselves are pretty good. As an example, once I went in after already taking a dose of prednisone and doing a nebulizer treatment with albuterol and ipratropium bromide. However, the nebulizer treatment was wearing off. The medical assistant told me I needed to move faster since they were running behind and asked why I was so slow. I said in broken English (as I couldn’t talk in complete sentences), “asthma bad. Neb wearing off, doctor please.” She responds by saying I just have to wait like everyone else and I need to not be selfish and I need to realize that other people are there as well. She puts me in a back room with the door closed and says the doctor will be in in about 45 minutes, and I just to be patient. She didn’t do any assessment, no peak flows, no respiration counts, didn’t listen to the lungs, didn’t get an O2 sat, no assessment done to measure severity. So, I stared at the door after she closed it, and thought, “well, that really builds my faith and confidence”…and I got a peak flow reading, it was low again (consistent with the symptoms), and I did another albuterol/ipratropium bromide combination in the nebulizer, I waited for 15 minutes after it was done, redid the peak flow, and it had come up some and I felt better. When the doctor came in the room, he asked me what I was there for, and I told him but also told him I already stabilized myself for the next few hours. He turned white, ran out of the room saying he needed a stethoscope and immediately responded. I told him about the medical assistant and that he may want to educate his staff better on how to triage asthma attacks. Even so, sometimes the doctors don’t understand about cough variant asthma, which can be a problem.

    The urgent care centers in my area are more expensive for the patient than the emergency rooms, but when you go in, you have a secretary who takes your information, then you see a board certified ER doctor usually within 15 minutes of when you first entered the door. Most people don’t go to these urgent care centers due to more out of pocket cost for the patient, but I usually do because it avoids the initial triage problems of some of the ERs in the area. Most of the time the doctors in my local urgent care centers understand about cough variant asthma and understand that every asthmatic is different and so will listen to me when I tell them how I typically respond.

    Sometimes medical personnel think that every asthmatic is the same and presents exactly the same, but it’s just not true. There’s a lot of variability between asthmatics, so I like it when a doctor will listen to me when I tell them how I typically respond to various medicines. Most of the time, urgent care doctors around here will do that….but medical assistants or unit secretaries in an ER may not because they may have only had a few courses in asthma care.

    I have more confidence in my local urgent care centers than in the ERs.

    Anyway, you are right, though…it’s better if an asthmatic is open about what is going on if they are around people who will be helpful. I’ve actually had experiences with people who have called me names or inadvertently take away my rescue medicines while I’m having an attack such that in that situation it would have been safer to be stealth.

    Through the years, overall I’ve found it much easier to just take care of it all myself rather than have to take the time and energy to explain things to someone else in an ER who may not know much about asthma other than an introductory course (I’m talking mostly about the initial triage folks, medical assistants, unit secretaries, etc).

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