How many times have you heard someone say, “It can’t be that bad”? For those with idiopathic pulmonary fibrosis (IPF), hearing this from a family member or friend — even if they mean well — can be disappointing.
IPF is a rare but serious disease that causes your lungs to stiffen, making it harder to let air in and breathe fully. IPF may not be as well-known as COPD and other lung diseases, but that doesn’t mean you shouldn’t take a proactive approach and talk about it.
Here’s how three different people — diagnosed more than 10 years apart — describe the disease, and what they want to express to others too.
Chuck Boetsch, diagnosed in 2013
It’s difficult living with a mind that wants to do things that the body is no longer capable of doing with the same degree of ease, and having to adjust my life to my new physical capabilities. There are certain hobbies I can’t pursue that I could do before I was diagnosed including scuba, hiking, running, etc., though some can be done with use of supplemental oxygen.
In addition, I don’t get to attend social activities with my friends as often, as I become fatigued quickly and need to avoid being around large groups of people who may be sick.
However, in the grand scheme of things, these are minor inconveniences compared to what others with different disabilities live with daily. … It’s also difficult living with the certainty that this is a progressive disease, and that I could go on a downward spiral without any notice. With no cure, other than a lung transplant, this tends to create a lot of anxiety. It’s a tough change from not thinking about breathing to thinking about every breath.
Ultimately, I try to live one day at a time and enjoy everything around me. While I might not be able to do the same things I could do three years ago, I’m blessed and thankful for the support of my family, friends, and healthcare team.
George Tiffany, diagnosed in 2010
When someone asks about IPF, I usually give them a brief answer that it’s a disease of the lungs where it becomes more and more difficult to breath as time goes by. If that person is interested, I try to explain that the disease has unknown causes and involves scarring of the lungs.
People with IPF have problems in doing any strenuous physical activities such as lifting or carrying loads. Hills and stairs can be very difficult. What happens when you try to do any of these things is you become winded, pant, and feel as though you just can’t get enough air in your lungs.
Perhaps the most difficult aspect of the disease is when you get the diagnosis and are told that you have but three to five years to live. For some, this news is shocking, devastating, and overwhelming. In my experience, the loved ones are likely to be as hard hit as the patient.
For myself, I feel that I have led a full and wonderful life, and while I would like it to continue, I am ready to deal with whatever comes.
Maggie Bonatakis, diagnosed in 2003
Having IPF is hard. It causes me to be out of breath and tire very easily. I also use supplemental oxygen, and that has impacted the activities I can do every day.
It can also feel lonely sometimes: After being diagnosed with IPF, I couldn’t take my trips to visit my grandkids anymore, which was a hard transition because I used to travel to see them all the time!
I remember when I was first diagnosed, I felt frightened because of how serious the condition is. Even though there are hard days, my family — and my sense of humor — help keep me positive! I’ve made sure to have important conversations with my doctors about my treatment and the value of attending pulmonary rehab. Being on a treatment that slows the progression of IPF and taking an active role in managing the disease give me a sense of control.