How do you handle comments that discount the seriousness of your PF?

[Dmeade]

Frankly, I take those comments as a compliment. I had full on Prostate cancer 15 years ago and my neighbors made the identical comments. I was trying to do whatever I could to keep my body in shape to get through that, so, it felt like I was succeeding at that at least. Now, with this disease, if I feel like someone is blowing it off, I say it is not too bad until I take off my O2 and cannot breath. There are some people who don’t get much of anything. I find the most sympathetic people are those in the medical field who know what the outcome is going to be and what a life altering disease it truly is.

[Mark maron]

I completely ignore people that have no purpose in my life,, I dont waste my time even thinking about this subject and what others think. Move on live your life!!

[Sheila]

I tell them that doctors are still saying the average life expectancy after diagnosis is 3-5 years, but I’m doing everything I can to extend that.

[Steve Dragoo]

When I cough, sometimes people give a harsh stare because they are afraid (post-COVID?). To avoid the blank stare after a conversation of IPF, etc, I just say, “allergies – gotta love ’em,” and move on…

[janie-555]

I appreciate Dmeade’s comment to “You don’t look sick.” Thank you is a great response to that! Part of my issue with the well meaning comments and avoiding my health challenges is that I get It from family members, my sister and my daughter too. A couple days ago was one of the first timesI heard my daughter recognize my lack of energy. We were discussing her upcoming wedding day and she told me I should get my hair done with her and her brides maids then go back to the hotel room until it’s time to take pictures. She ended with saying, “its going to be a long day and if you try to do it all, you’re going to wear yourself out.” Im hoping she finally gets it after seeing how I made it thru her bridal shower as the hostess, yet completely drained my reserves and then some.

As for my sister, I’ll have to think on ways to respond similar to Dmeade’s above response. Thank you!

And SteveDragoo, I with ya with people gazing at me when I have one of the coughing fits, as I call them, when I often times feel and sound like I’m going to cough up my lung, right?

[David Reno]

I had one comment that just floored Me, I still am not over it. My own Bro. said “what going on, You have had this lung thing for 3 years I thought You would be dead by now. I am on ox most of the time, I don’t look sickly. What are We to do, hang a sign around our neck ?

david

[Sis]

I was diagnosed with Pulmonary Fibrosis in August 2023. I have handled my diagnosis well up until this point. I took 100 mg OFEV for 18 months without issue but started having issues with very bad cramps and nausea so I stopped. Now that I have stopped my breathing is worse. Have had brief visits to Emergency Room recently. Last visit my oxygen level dropped to 31. I panicked but was able to call ambulance. My question is now I panic when oxygen gets low I’ve never been this way and I get embarrassed because of it. I have family and friends but they can’t see what I’m going through. I have read the comments above and thank you. Any advice for me on how to stop feeling so embarrassed about my condition.

[Charlene]

Hi @Sis

I resonate deeply with your post! This is one of the hardest parts of having PF, which is largely an invisible illness until we are dependent on oxygen. It is very hard to have others’ understand what it’s like to live with this disease. I’ve done an activity for my friends and family (though, I’m not sure if it would be helpful, as I know medical professionals likely wouldn’t do it) but have them put a plug on their nose, then breathe only through a straw and walk around. They get a bit of an idea of how difficult it is to breathe. I also wrote a column on PF news about how hard living with the invisible illness of PF is; take a read if you’re interested and know you aren’t alone here.

Char.

[Samuel Kirton]

Charlene,

I love that idea. I am going to start sharing that in support groups.

Sam…

[Sis]

Thank you Charlene. I m back in hospital and feeling some better since put me back on Prednisone as I was on before. I was not taking any at all and wondering if this is why I was having Panic Attacks. I know you have taper off Prednisone not stop abruptly. What do you think about this. My oxygen was supposed to be on level 5 and they had set on 3. Got them to raise it back up. Pluse I am Diabetic which have not treating. My monitor read out of range. This has been since Sunday now today is late Tuesday BS is 600 coming down slowly. Maybe all this combined explain my panic attacks. What you think. Thanks for your concern.

[Shelly]

I’m glad you asked this question, and I am enjoying reading everyone’s response. I usually get “you haven’t coughed at all during …..” I find myself almost defending myself for having a cough free moment. I know there’s no harm intended, but yes.. I know I didn’t cough during dinner or whatever, and yes, I’m coughing now. Not something I can control. I get a lot of stares and comments on the airplanes when we fly. I usually let people around me know firsthand that I’m not Sick, that I have a chronic cough. Dreading our 17 hour flight to Turkey on Sunday. Nothing helps with my cough. Sometimes I just take a Xanax to knock myself out, it seems to be the only time I get some peace. Trying to see the world and enjoy life while I still can.

[Samuel Kirton]

Shelly

My wife wanted to make me a t-shirt telling others my cough was not contagious. I applaud you for traveling as long as you can. It is one way to make every breath count.

[Sis]

Thank you Sam