The most common:
Thank you for the raw reminder of the rareness of my condition. I’m aware I am rare, and when someone gets excited or is in awe about my uncommon lung disease, I am left thinking I should not have told them in the first place. My diagnosis has a place in medical history, not on your tongue to dispose and decorate with adjectives of “freaky” and “freakish.” I am not in favor of an incurable disease being associated with enthusiastic statements. My diagnosis is serious and a reality I face each time I am in need of my inhaler. So please, tone down the terms of astonishment, chuckles of awe, and jaw-dropping faces, as I do not find them particularly helpful to my journey and prognosis.
This show stopper statement:
“Usually it’s found in autopsies.”
Thank you for this nugget of unwarranted information for my ears to capture and my mind to wrestle with. I was already aware that dendritic pulmonary ossification is found postmortem or in the deceased. I will validate this fact, but I draw the line at someone talking about my diagnosis as if I have one foot in death’s doorway. I am at the very beginning stages, if there is even stages, of my disease, and I find it a bit nerving to cross the line of life and morality when I am still living.
This tic-tac sentence:
This term, in response to my telling of my lung disease, is not that uncommon. But there are things more “crazy” than an incurable, chronic disease. I find it crazy that I have never seen the ocean or the fact that I can eat pizza and tacos in one sitting without getting a stomachache. I find it crazy that I have not been to Disney World, Mount Rushmore, the Grand Canyon, or to see the Statue of Liberty. There are other “crazy” things out there, and I do not think my disease is that. In fact, I think my disease is well-sounded, attuned, and believable.
The why-was-that-done? proclaim:
“That’s a surgical lung procedure for cancer.”
Thank you for telling me my procedure was unjustifiable. First, I don’t have cancer. Second, the procedure was done because nothing was coming back on my other blood tests, scans, and procedures you knew nothing about. Third, is an unjustified procedure really unjustified when an objective and solid diagnosis is reached? Fourth, sometimes tests and procedures need to go off the conventional path to the unconventional. If this surgery was not done, I do not know and I cannot imagine what my lung health would be like.
My personal favorite:
“Do you mind if I look at your records?”
Thanks, but no thanks. You called me “rare,” “unusual,” and “an interesting case,” and that’s all fine and dandy, but I am not going to hand over my case to someone who is not trained in a medical profession. I am not going to disclose and release the unknown etiology of my lung condition. I am not going to put myself in a position where you are going to riddle and question my very personal, extremely extensive, medical record. I appreciate the concern, but I am going to place my care in those who have been practicing medicine longer than I have been alive.
The one my doctors do not even know:
“What’s the plan?”
That’s a good question, but I cannot answer that. I cannot explain a plan when I have not exhausted my medical resources. I cannot define what the plan is because I am a microscopic percentage of those who have been diagnosed with ossification of the lung tissue. When I know the plan, I’ll be sure to let friends and family know first.
“You should have side effects”
Is that so? I should be having side effects. I should be living the life of senior in college, applying for internships, completing classes on time, and thinking about college graduation in the spring. I’m not, and that’s OK. Instead I have dedicated my life to pursuing a quality a life better than the quality I have now. When you say I should have side effects, I want to remind you that all bodies have different reactions to medications and different tolerances of medications. Medicine that makes most sleep, makes me wired. Medicine that makes most wired, makes me sleepy. Just because I do not have a side effect does not mean there is another thing “wrong” with me. I actually have the opposite effects to medications than the general population, so I guess you could say I am not only rare in my diagnosis but I am rare in my body’s internal reactions to what is considered “normal.” And frankly, putting your energy into understanding my opposite effects is not going to make my body have a common effect like the rest of the crowd. My body’s physiology is just as individualized as the next person, so try not to make generalized statements about my health.
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Thinkstock photo by Steevy84