I look too Healthy

I get this all the time……… “You look so healthy” “You don’t look like you have a disability” “You can walk farther then I can”
“You look amazingly fit for someone with severe asthma” “You make marathon walking look so easy”, and so on, and so on….

I usually take it as a compliment, but sometimes I’m not sure how to respond. Maybe they think I’m faking it? Even some of my closest friends can’t believe that my lungs are as bad as they are ….and most of them are Respiratory Therapists! What’s even more amazing is that many of them have actually taken care of me when I’ve been a patient in the hospital. A few of them have even taken care of me while I was intubated on a ventilator. Maybe seeing me participate in major physical activities is confusing them. After all, severe lung disease and sports usually don’t go together, right?

Here’s the deal, I have an invisible disease and………..

* Ive been short of breath most of my life, so Ive learned to adjust.
* I pride myself in the art of “appearing healthy” , I’ve had 50 years to get it right.
* I’m very good at hiding how crappy I usually feel , but there is a limit and you’ve all seen it.
* I don’t like to huff & puff in public, its embarrassing to me. When I’m sick, I stay at home.
* I don’t rant and rave or get hysterical when my breathing gets difficult. I tend to be stoic.
* As far as my walking abilities go, its taken me 5 years of almost constant training just to accomplish what most people can do in a few weeks.
* I have an extremely high tolerance for the physical discomfort associated with shortness of breath, so I tend to push myself harder .
* I have credible will-power to achieve goals that I set for myself.
* I’m a risk taker and also a little crazy.
* Remember, that Hardcore asthmatics compete in nearly every sport imaginable.
* Like most chronic lungers, not everyday is bad, I have my share of good days too.

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6 Comments

  1. Brooklyn says:

    Steve, what a great post! You put into words what I’ve had trouble even formulating in my thoughts. I don’t think about it as much as you do, I’m sure, but still… I get my fair shares of “you look so good” and “eight miles? I can’t even run eight blocks!” yadda yadda. I’ve never had a response. Where are these people when I arrive at home from a walk and I’m sitting gasping for air and none of my bronchodilators work and I’m staring with dismay at a low sat reading?

    With your permission, I’d like to adapt your list to my own situation.

  2. Steve says:

    Cris?, It would be an honor.
    List away……….

    Im not sure why that was bothering me but, I just had to jot down my thoughts.

    Im so glad that there is someone else out there who can relate.

    If people only knew what we go through…

  3. Steve says:

    The fact that you’re desaturating is troublesome to me.

    Like you , sometimes I get agonizingly SOB after a walk ,but I usually dont desaturate that much.

    Please be careful!

  4. Melissa says:

    I can relate too. Thanks!

    Melissa

  5. Zim says:

    I experience this same. This is stereotype, that chronically ill people only stay at home, lie in bed and always are very weak. But most of chronically ill people who I know aren’t seen as chronically ill – this is the fact. Most people don’t know anything about this topic, so they think that we are healthy. Some people was talking me, that I made up my disease, what was really unpleasant.
    Best wishes!

  6. Mariah says:

    Thank you.

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