The Problem with Asthma, and Looking Sick

Do you remember my earlier posts about doctor-patient relationships? The ones generated by some CNN/Empowered Patient articles—in an otherwise valuable series—that glossed over or ignored the specific needs and special relationships of a chronic issue like asthma?

The other day, Steve wrote something that made me think and helped me clarify why I think the doctor-patient relationship falters sometimes when it comes to persistent asthma.

I hate to use the word inspirational, which stopped meaning much when people started overusing it, so let’s just say Steve impresses the hell out of me. He’s a severe persistent asthmatic, and by *severe* I mean he suffers from one of the most complex cases ever seen in a patient still living.

Only I shouldn’t use the word suffer, either, because Steve absolutely refuses to do just that, despite multiple near-fatal attacks (NFAs).

He won’t suffer. He persists.

Because he’s had severe asthma since birth, but he’s had a life to live, too. That’s why he racewalks. Just last month, he completed a racewalking marathon in Rome with no complications.

But this month found him hospitalized for 18 out of 30 days, most of those in the ICU and some of them on a ventilator. During the second hospitalization, he made a mistake:

Anyway, during a rare moment of weakness while in the Emergency room, I did the unthinkable, I spoke candidly with a resident/intern doctor about my recent trip to Rome and the marathon. I can’t stress this enough! … When speaking to a resident/intern, never …NEVER, combine the words ” Walking a marathon in Rome ” with ” I am a severe asthmatic” in the same sentence. To the uninformed medical practitioner, if one statement is true, then the other certainly has to be false. This Physician actually made the remark that if I was able to travel all the way to Rome to walk a marathon, then there’s no way my asthma can be as bad as I claim. He implied that I must be faking it or exaggerating the severity of my symptoms. The sad part, is that I actually started feeling guilty about taking up valuable bed space and began to think that maybe there was some truth in what this guy was saying. After all, I did do a marathon.

Now, clearly I’m biased towards respiratory patients in general, but if anyone deserves *valuable bed space,* it’s a patient who can barely breathe, right? Because if you can’t even perform the basic act of respiration easily, then you shouldn’t also have to worry about guilt.

To be fair, not all doctors are like this. Most aren’t, in fact, but it only takes one.

I battled attitudes like that doctor’s to a much lesser extent when AG was little. Because kids, asthma or no, don’t look very sick when you take them to the pediatrician. We’ve talked about this before, the Baby-Get-Well game, that superhero ability of little kids to perk right up as soon as they step into the doctors’ offices, making liars of us all.

When AG would cough and flare all night long, sleeping only about 4 hours a night, she’d still laugh and giggle and bounce off the walls during her appointment, and her (quickly replaced) pediatrician would say, “Well, she seems fine. Just keep doing what you’re doing.”

Not knowing much about asthma in the beginning, I would. Why worry if her doctor didn’t?

Here’s why. This is what happened next to Steve:

Well if I’m an actor, I must be a pretty damn good one, because 18 hours later , my PCO2 climbed through the roof, I went into respiratory failure and ended up on a ventilator for 2 days. After I came off the vent I barely remembered the incident , but I was told that he was reprimanded and removed from my care ( no doubt over concerns about a potential lawsuit, if any of that nonsense showed up in my chart) . His comments bothered me, but I really cant blame him. Like my pulmonary doc says, I’m the odd ball, the exception , not the rule . The burden of proof will always be on me, not the medical establishment.I cant proof my disease with words, because I don’t fit the mold, I look too healthy. I have to prove it clinically with years of medical records and the documentation of hundreds of tests.

PCO2, by the way, is the amount of carbon dioxide in the blood. Too much means you’re not breathing well. At all. Hence, the respiratory failure. (Never let it be said you don’t learn anything here at the Blog of Inferior Breathing.)

You see the problem with doctors making judgments based on physical appearance? Sure, Steve’s the exception. It’s sort of amazing, actually, that he can be so active despite some of the most severe flares on record. I get that doctors not familiar with his case are understandably surprised at his asthma severity, given his demeanor and active lifestyle.

Plus, I know lethargy is a huge warning signal for doctors, especially in kids. A lethargic attitude in a child can indicate a serious health concern, though not always.

But.

1. You never know, just by looking, who’s going to be the exception.

2. Asthma is an “invisible” disease. You can’t see it. Until a patient’s having major problems, you usually can’t hear it. And that’s for all asthma, not just severe cases.

3. Lack of lethargy doesn’t necessarily equal good health.

Doctors know this. That’s why I’m frustrated with all these articles that explain how we’re *supposed* to act in the doctor’s office. How parents are not to suggest our kids’ diagnosis, for example. I won’t even get started on the Obnoxious Patient article again.

Something’s got to give in this relationship. I’m just sayin’.

Doctors, you don’t want us bringing stacks of Internet printouts, our own diagnoses, and treatment suggestions to our appointments? Okay, then stop making health assumptions based on physical appearance and be open to this idea: your patient might just be an exception to the rule, like Steve. Like my daughter.

Because the asthma patients I know, and one very active 9 year-old who loves horseback riding and basketball in particular, aren’t going to sit down and give up in the face of their breathing struggles. They’re not going to force themselves into your conception of what someone with breathing problems *looks like.*

And they shouldn’t have to.

Consider Steve’s words, before he left for the Rome marathon in March:

As you might imagine , I’m very excited about this trip, and yes…a little nervous too. After all, this is a pretty ambitious undertaking for someone with such funky and unpredictable lungs… I’m stepping way beyond my safety/comfort zone on this one . If my lungs get outta hand, I just can’t call my doc and tell him that I’ll be right in. Short of not going at all, I think I’ve taken all the precautions I can. I’ve even purchased an emergency medical-evacuation plan which would supposedly jet me back to the US from anywhere on the planet if I’m hospitalized . I’ve missed out on way too much of this world because of these “what ifs?” in my life, and I refuse to let if happen anymore. If I’m breathing half way decent and I wanna travel half way around the world to sight see and walk a marathon…. I will. Hey, I may not bring home a medal every time time, but I can guarantee you this, I will come back much richer in other ways.

9 responses to “The Problem with Asthma, and Looking Sick”

  1. Steve says:

    Amy….WOW .. THANKS ! Im not worthy of such a nice write up. But, its an important topic and I think you did a amazing job of explaining it. ( geeze you know more about me than I do) Thank you so much!

  2. Asthmagirl says:

    I read about Steve’s trip and subsequent hospitalization (unrelated) with great interest! and agree completely that we should do all things we can when we feel well enough to do them. No one wants to sit in the recliner waiting for the next flare up!

    If I had contributed (undeservingly) to this write up, it would have been to note that the reason I drive so flaming far to see my doc when I’m flaring is because he doesn’t “expect” me to look a certain way. He doesn’t say stupid things like “You can’t be that sick, you’re not wheezing” or “This sounds like anxiety, lets treat that and see how it goes”. Both of which I’ve heard.
    A good doctor gets that asthma is an individual disease and evaluates what is before him, not what he read in a text book 10 years ago. An asthmatic shouldn’t have to think “If only I presented in a traditional way then I might get the treatment I need”.

    I’d like to think there’s other docs out there that understand when someone is not moving enough air to wheeze (or cough), that are willing to play ‘lets make a deal’ with a prednisone dose and treatment plan, that trust their patients assessment of their symtoms and ask what medications they need filled. Because it’s not that hard to listen. It’s the interpersonal skills that propogate our compassion. It’s the willingness to learn something new rather than assume we know everything that makes us outstanding at whatever we do.
    In this age of cost centered healthcare, it’s important to remember that good listening skills, even within a 15 minute appointment don’t cost additional to deliver.

  3. Amy says:

    Steve, My pleasure entirely and thanks for letting me grab whole passages from your posts.

    Guys, I’m considering getting a t-shirt made for AG to wear to the ER and the doctor’s office:

    YES, I’m struggling to breathe.
    YES, I’m smiling anyway.
    NO, my mom won’t shut up until you take me seriously.

    What do you think?

    On the other hand, Asthmagirl, maybe I’ll just use your sentence on my own shirt: “It’s not that hard to listen.” That sums it up nicely.

  4. Claire says:

    Hello! Steve is very inspriational in my IMHO.

    I’d love one of those shirts, too!

  5. Cara says:

    First off…. I LOVE the shirt idea, I think you should do it, AG would love it!!

    We had this same issue when M first started coughing, Dr.S NEVER heard her cough! Lucky me I have access to the worlds most informed mother of inferior breathing!

    This doctor patient problem goes on way too much, I have almost 10 years of the same medical issues and complanints, the symptoms have NOT changed, but I am young and appear healthy and there is not a blood test specific for my muscle disorder so I have had to fight with Doctors to get help. I FINALLY have a doctor that has taken the time to read the 10 years of medical records and has realized that I’m not just a drug seeker, but a person who although I look healthy I live with constant pain. You just have to keep going until you find a doctor who will listen and take you seriously.

    Congratulations on the marathon Steve!!

  6. wendy says:

    Is that little girl yours? She is sweet. And glowing – even though her face is partially hidden behind her hair.
    Loved Steve’s article. He really has spunk! I wrote a comment in his blog about a publication called “Sick Lungs Don’t Show”. Can’t remember where I saw it, but it tells the same story.
    And, I sooooo understand taking your child to the pediatrician and having them jumping off the walls. They’ll do it every time.

  7. Amy says:

    Cara and Claire, maybe I’ll have to set up a Cafe Press store or something—-although I don’t actually think AG would wear the thing. Good point, Cara–this doesn’t just apply to asthma but to all “invisible” illnesses.

    Wendy, that’s her in the flesh….er, I mean “on the screen.”

  8. freadom says:

    Great post. Beleive it or not I have seen this first hand on the medical side. And I have also overruled a doctor on sereral occasions or forced his hand. It’s just proof that doctors are human, prone to be wrong on occasion, prone to error, prone to stupidity, and prone to burnout. They also have to face a lot of people who really don’t need to be in the hospital, and weeding them out from those who really, truly need to be there and prioritiziing who needs what and when can be a very stressful task. However, with Steve’s history, he should have been taken seriously right off the bat.

  9. Amy says:

    Sure, I understand drs. have to prioritize, esp. for people who really don’t need to be there at all. I just don’t like being told, “Be careful how you present Internet research. Don’t suggest things to the dr. , etc. etc. etc.”

    Because drs. don’t have unlimited reserves of time and patience and do get things wrong like anyone else, I feel like they should be more open to listening to parents/patients who are informed and pro-active. Particularly since asthma is so notorious for staying “hidden.

    Anyway, I always love your perspective from the other side.