In the latest “Question of the Quarter” feature in PHA News, patients gave their responses to the insensitive and uninformed comment “but you don’t look sick” that many people with PH have heard sometime since their diagnosis. No surprise, three of them were support group leaders! Check out what they had to say.
I try to be patient. I say thank you but flash them my pump and say something like, “Yes, sometimes PH doesn’t show, but my cardiologist keeps me conscious of what a serious illness I have.” — Joanne Sperando-Schmidt
I have said to bus drivers questioning me about the Medicare disabled discount on my bus card, “What would you rather see? My diseased lungs or my sick enlarged heart?” It shuts them up quick! — Alex Flipse
I am always red from my medicines, and I am always getting questions like, “Oh my goodness, where did you just get back from? Where did you go and get all of that beautiful sun?” And I always reply, “My couch — I am sorry my medicine does this to me. I am on three very potent vasodilators that make not only my pulmonary arteries open up, but all of my other pathways in my body open too, giving me this beautiful red glow. Thank you so much for noticing.” — Tara Suplicki
We recently promoted the idea of getting an experienced public speaker to join your meeting to help members create their elevator speeches about PH, including their elevator speeches for situations like this. Here’s how to plan that meeting:
Topic: Preparing Elevator Speeches About PH
Speaker: Experienced Toastmaster from a Toastmasters International club (www.toastmasters.org/Find-a-club)
Sponsor: Request the Support Group Central Fund
