Do I look like I have a debilitating  and life threatening disease?
Do I look like Im suffering from a debilitating life altering disease?

How many of you with asthma problems can relate?

“But you don’t look sick”, or “Your sats are OK” or ” “Maybe it’s just anxiety” or “If you’re so sick, how are you able to exercise and do normal things?”

As a person with very severe lung disease who publicly flaunts his fitness achievements, Ive certainly had my share of skeptics and raised eyebrows. But these kinds of knee jerk assumptions are not only inaccurate and hurtful, sometimes they can even affect the kind of medical care you receive.

Case in point, not too long after I completed my first full marathon back in 2006, I had a pretty bad asthma flare and ended up in the hospital. Feeling proud about what I had accomplished through daily exercise, I shared my marathon story with one of the intern doctors who was assigned to me. Rather than congratulating me, he basically accused me of faking my asthma. His words were ” There’s no way you could’ve walked a marathon if you have severe asthma.” I found out later that in my chart he actually wrote, “patient presents with factitious asthma, claims he walked a marathon“. That probably explains why some of the nurses were treating me so strange during the hospitalization. A rumor had spread that my asthma was very mild and probably psychosomatic in nature. I remember some of the medical staff trying to convince me that my breathing difficulties were all in my head and that I had some kind of generalized anxiety disorder. Are you freaking kidding me! And even scarier, this happened at a well respected teaching hospital.

That incident caused me a lot of grief and took over 3 years with lots of letter writing by my pulmonologists to have that false information removed from my medical record.The reality is that these are the kinds of screwy preconceived generalizations that people have about the way sick people should look and behave. And if I want to be completely honest here, there have been times when Ive guilty of the same.

So I guess the message here, is for everyone ( Drs included) be open minded and make sure you have all the facts before passing judgement based on the way a person looks or acts. And in no way do I apologize for my physical achievements or the way I look. The fact is, I work really hard at staying healthy and playing the part.

I love Denise Reich’s take on all this. She nails it perfectly with a wonderful article she wrote titled “Why I wont apologize for having fun while sick” Check it out.

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2 thoughts on “But you look so healthy

  1. Liz Bernard says:

    Thank you, thank you, THANK YOU!

    I’ve been in the middle of bad flares and have been told by ER staff that I’m “just anxious” or “are you sure it’s not anxiety? Your O2 levels are excellent.”

    It’s caused me some serious PTSD and has hindered my medical care immensely.

    I’m glad that you have the readership and reach to get to some of the docs, nurses, and those in health care to let them know that just because I “look OK” and I’m not wheezing DOES NOT mean I’m ok!

    Got an appt with a new pulmo tomorrow and he comes highly regarded so I’m hoping that he can help me.

    Hope you’re feeling well!

    1. Hi Liz, Thanks for writing. Unfortunately, your story is not uncommon. I wrote a post about the anxiety thing a while back. Good luck with the new Pulmonologist!

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