As someone living with idiopathic pulmonary fibrosis (IPF), I have enjoyed connecting with others on a similar illness trajectory as me, as well as those living with different kinds of illnesses, including different forms of pulmonary fibrosis. We all have things in common, as well as things we…
Living with IPF — a column by Charlene Marshall
The “Spoon Theory” is a tool that you might find helpful when explaining your chronic illness and the limited energy it allows you for completing activities of daily living. The Spoon Theory uses spoons as a visual representation to quantify the energy. For example, you might start out…
Working with a life-threatening illness such as idiopathic pulmonary fibrosis (IPF) is difficult to manage, regardless of whether that work is full- or part-time. Exhaustion, illness, and hospitalizations often get in the way of being able to complete tasks efficiently, and may also prevent me from meeting organizational deadlines.
It has been just over a month since the successful launch of the Pulmonary Fibrosis News Forums, and we have many of you to thank. The activity created on these new forums tells us that this type of website has been helpful for patients and that it can be…
If you have been reading my previous columns, you might recall that at the beginning of the new year, I decided to write a gratitude piece as each month in 2018 comes to a close. It is hard to believe this is the case for February already!…
Some people would call me unlucky to have life-threatening idiopathic pulmonary fibrosis (IPF) at the age of 28. Even more would agree that I have bad luck if they knew that the prognosis for this disease was three to five years. I am approaching my second year after diagnosis,…
Today, Feb. 28, is Rare Disease Day. Rare Disease Day is a movement founded by EURODIS, a nonprofit alliance that is the voice for people living with rare diseases in Europe. Since its inception in 2008, Rare Disease Day has taken place on the last day of…
Those immersed in the world of idiopathic pulmonary fibrosis (IPF) know how quickly things can change from stable to critical. Regardless of whether you are a patient, caregiver, friend, or advocate, it comes as no surprise to hear how serious this disease can be. Numerous factors can contribute…
In the past, I thought anxiety entailed someone feeling upset, worried, or nervous. I thought it was situation-based, meaning something triggered it. And I thought anxiety usually manifested in a physical way that was visible to others, such as crying, shaking, sweating, or fidgeting. The older I get, the…
If you have read my previous columns, you are likely aware that my life before being diagnosed with idiopathic pulmonary fibrosis (IPF) was very different than it is now. This is something I often write about because I can’t believe the dramatic transformation from who I was…
