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.
I do this all the time. I have gotten myself into real medical trouble more than once because of waiting. I am glad you brought this subject up!
Was this sparked by a certain discussion?
I'm also glad you decided to write about this, because as I've found out, a LOT of us do this. And, all the questions in the third paragraph — I've asked 'em myself, too.
Yes it was sparked by a recent discussion, though I actually wrote it a while back.
I have the same guilty feelings about going to the ER. It's probably because as a child, I was kept out of the hospital unless I was seriously, deathly ill. My mom is a nurse, and she really didn't want me to be around all those germs when I was already so sick (and she does have a point). I was really well taken care of. Now though, after being breathless a number of times and going in for them to tell me I'm not wheezing and to go home, I just figure "What's the point"?
Also, I'm Canadian, and while I love free healthcare, I don't love waiting 4-8 hours in a dirty waiting room
one often waits that long in the States too…not asthma related, but I went into the ER with A migriane that had me experiencing stroke like symptoms, and I still sat in the waiting room for nearly 6 hours. (thank goodness it wasn’t a stroke)
Heather, I'm Canadian too, and I feel the same way.
I always used to hide how I felt when I was a kid, I didn't like the attention my mum gave me or anyone else. My mum knew though and I would often wake up at night to find her watching over me as she could hear my dodgy breathing from her room. I used to beg her not to phone an ambulance 'just another half hour please' . I'd crawl to school just to prove I was ok. I also hate my mum visiting me when I'm ill, I used to get really upset and tell her to go home.
I've got better at admitting defeat and going in now, 3/4 nebs and then its ambo time.
We are a strange bunch us asthmatics!
I tend to procrastinate until I feel I am "bad" enough (increasing use of albuterol, becoming short of breath with less exertion then usual, more sudden symptoms coming on, etc.) before I seek help, usually first choice with primary care physician. Having been through the wringer many times, I tend towards the stoic, go with the flow approach. Don't want to be labeled hysterical female patient. My lungs have been gradually going downhill last few weeks and finally had my routine appointment with pulmo doc yesterday. He got me a steriod shot and put me back on prednisone. Hopefully this flare-up won't get any worse now. Of course, now he wants to do a bunch of heart tests on me to rule out any cardio issues. I fail at the treadmill stress tests because even on my best days I can't walk quick enough before I get SOB to get enough time on the machine for an accurate heart assessment. Bah! Anyhow, thanks for letting me vent!
Gayle, you can vent here as often as you like….I totally get it. There are a lot of us flaring right now. Sept and Oct seem to be bad months for asthmatics.
I didn\’t know they still gave steroid shots at the doctors office. I used to get those back in the 1980s. It was a drug called Celestone.
I hope the shots helps turn you in the other direction.
I used to get steroid shots-they were a drug called Kenalog. I got a steroid shot yesterday, but at the hospital!
I have adult onset asthma and part of the reason I used to wait is that I had a difficult time deciding if I was really having an asthma attack. Then I would think I would take time away from the people who were sicker than me. I live in a very small town, with a very small ER and hospital. I have to go to the ER for other things and they have gotten to know me in there. It is kind of embarrassing when you local ER knows you by name.
I used to feel the same way about not wanting to take a precious hospital bed away from someone who might need it more. But the fact is, the majority of patients you find in a typical ER, are there for things like colds, mild flu, sprains and bruises, etc. Hardly life threatening stuff. If you\’re having a severe exacerbation, you\’re probably be one of the sickest patients there, so no need to feel guilty.
I will often sit on the couch, not moving air well at all…KNOWING that I'm in trouble, doing piggy back nebs, with the thought of "who is going to take care of the girls if I'm in the hospital" Of course, rationally, I know that my mom, or my mother in law would come to help…but I'm not always rational when I can't breathe. I also need to start asking myself "who's going to take of the girls if I die"
Excellent topic. Next, you should cover why so many asthmatics are so embarrassed to use their rescue medication in public. (though, it might stem from the same place.)
Haha, I\’ll leave that one for you! We are inhaler stealth experts. The hardest part is disguising the sound.
Oh I know this feeling all too well. I always feel silly calling and ambulance to go to hospital when I am kinda mild but getting worse. I feel like I am not as bad as I can get so dont want to waste the drs time. I think it stems from a similar situation you had steve but not as severe. I walked into A and E when I was at uni in the south of england to be told by the receptionist that I didnt look like I was having as asthma so couldnt be that bad so needed to take a seat and wait my turn. I was sat near the triage nurses door. I sat there for about 30 mins before the nurse saw me and took one look and called me through and shouted at the receptionist to let the resp team know I was here. I had my sats done and they were dropping so I was taken through to resus and then sent up to ITU. I always wonder what would have happened if that receptionist had listened to me when i told her my asthma goes down hill very quickly. I always wonder if I would have ended up in ITU.
I have had a few experinces where receptionist and even junior Dr's have been you dont look bad and your young so you will be ok.
Thanks for sharing the story steve. I know I shouldnt hold back in going in but I do. I think it is a fear factor too as I know what it is like and I think I try and kid myself things are not as bad as they are.
Wow this is such a good point.. I usually wait to long but am getting better at going earlier. Once the triage nurse didn't believe me made me wait etc. when a ER doc came in that knew me he couldn't
believe they made me wait (and I was getting alot worse) He called me right in and I was really really tight,I did end up in the ICU.. The only good thing was he went right out to that nurse and set her straight and the Nurse Manager someone else… I am on a good streak right now and actually had a dream about going to the ER and how horrible it was….. My mom always made me feel guilty growing up with my asthma..
Thanks for letting me vent…
That's awful. I think I would have complained .
One thing that might help in the future, is contacting your doctor before hand to let them know you're going in. Then when you arrive at the ER tell the triage Nurse that your doctor sent you. I bet they wouldn't make you wait for very long.
How we are treated by medical professionals is what makes us feel this way, not what is in our heads. Most asthmatics know when there is a problem. If the medical professionals listened and acted on the asthmatic's statements I doubt this would be a problem. Here's an example – when someone has a history of asthma, and walks in, stating they are having problems, how about immediately, before iv's, before anything else, getting a nebulizer going, so that they at least have that going, before getting to iv's, etc.
Forwarded from Katie Diemer, Steve – I am totally with you. Not to mention all the other commenting people as well. However, I don't think it is just in our heads, nor do I think the problem is over. I think there is a lot of subtle positive reinforcement of the idea that what we have isn't that serious, when we do go to the hospital. My action plan, for a long time, has been to call the Dr.'s emergency number, and see if he thinks I need to go to the ER, or if there is some other solution. The responses I have gotten range from the following: 1) My doctor's partner (all of whom are asthma specialists) saying – I'm not sure its asthma because you are coughing so much, 2) going to the hospital and having the triage nurse, or the nurse, or the rt, or even on occassion the doctor, say it "I'm not sure its asthma because you are coughing so much", or "gee, I'm not really sure how to deal with this because …. then fill in coughing too much, I can't hear wheezing, oh there aren't any sounds in the lungs, but gee you aren't breathing very well, etc." to 3) while I was in an ICU having a nurse tell me I didn't really need a breathing treatment, that I needed to wait for it and just not panic. All of these responses are responses which strongly feed into that feeling of I should not have come here, because I'm not really sick, and I am bothering these people. No one, no matter when they were brought up, and what their background is, wants to feel like a burden. Being a burden while in a hospital wearing a gown that show's off your butt, is worse. Yet, asthmatics often go to the hospital, and are immediately greeted by someone who verbally tells them they don't have a symptom which the person implies is "the" symptom for the diagnosis the patient thought they already knew they had. Often that comment is heard by someone who is having some serious trouble breathing, which also causes problems thinking. At least I always find it so. It's not surprising in that milieu that asthmatics don't rush to the hospital. The entire system is sending signals to their somewhat oxygen deprived brain that really the asthmatic doesn't have what the asthmatic is pretty sure the asthmatic does indeed have. Add to that the normal reasons one doesn't want to go to a hospital: 1) asthma for me usually happens at night and I don't like waking up my husband, or finding someone to watch the kids at 1 in the morning, 2) who wants to hang out in an ER at 1 a.m., in an urban area – I suggest no one — unless they are doing their sociology thesis or something, 3) those darn butt baring gowns! etc. I have to say that I had one experience in going to a hospital that was vastly different, and stands out because of it. I was on vacation, and hadn't taken my nebulizer, because I wasn't having any problems. I was lying awake, having some trouble breathing, but not so bad, I actually thought of going to the hospital. My husband woke up, and was worried the breathing would get worse, and suggested we go to the hospital. It was 3 in the morning, and I wasn't feeling terrific, and I thought why not – why ruin a vacation if this gets worse. We went to the hospital, as we walked in the door, there was a person you spoke to. Then you went to the triage nurse. When my husband and I got up to the greeter, she turned to the couple behind us, and said – just a minute, walked over to the triage nurse, and said, I have an asthmatic here, and am going to take her back to get a treatment, while we figure out what else she needs. She walked us back, introduced us to a nurse, whose first question was did I think I needed a treatment. I said yes, and it happened right away. By the time the doctor came a few minutes later while I was sucking on the nebulizer, I was in much better shape, and was able to go home without much more than some additional pred, in a much shorter time. Honestly, if that is what happened every time I went to a hospital, I would have a lot less qualms about going to hospitals. Most people who have asthma severe enough to need a hospital visit know if they need a nebulizer treatment, so asking that question first, and acting on it, not only sends a message to the patient that they are honoring the patient's disease, and the patient's own knowledge of that disease, but gets the problem dealt with. It doesn't seem like much of a down side risk either – as far as I know nebs aren't addictive, so there would be no harm if someone took one when they really didn't need it. But that was one hospital visit, out of god knows how many. I think we all, as asthmatics, do have our own issues about our disease, but I think a lot of those issues are reinforced by how the medical establishment deals with us."
WOW..You go girl!
Thank you for this. I've had some bad attacks, and come from a family who doesn't do medical care (really). So my sense of what's bad is way stilted, and I also find myself uping the bar of how bad is bad too. Right now I'm on medrol for two weeks, but at least I can breath.
Melissa
Oh I am so glad you posted this!
I am new to an asthma diagnosis and at the onset of my asthma diagnosis I would go to the hospital almost weekly because I couldn’t breathe. Docs would discharge me because I was a “hypochondriac” and it was just “anxiety”. Since then I am TERRIFIED of going to the ER for fear that I will be shooed out and thought of as an annoyance because they don’t hear me wheezing so “it can’t be asthma”.
I even had a psychiatrist come into my room, tell me it was all in my head and prescribed me 1mg of Ativan 3 times a day! By the time I was done with the prescription in a month’s time, I was literally addicted to Ativan. By that time I had a diagnosis from my godsend of a doc but had to get my asthma under control AND detox from Ativan.
Thanks for posting this and letting me know I’m not alone in my experiences. It has been a depressing, frustrating and scary world these past 8 months but I am glad I’m not alone.