Why I Am Reluctant to Share IPF Struggles
Do you ever feel that sharing difficult news about yourself is a burden on your friends? I have been struggling a little with this recently and, as a result, I am feeling very alone. Writing this…
Living With IPF — Charlene Marshall
Charlene Marshall is a fiercely independent 30-something-year-old who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Emotions resurface when a loved one receives an IPF diagnosis
Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in 2016, I’ve learned to manage my emotions about my illness. However, there are a few circumstances that make it nearly impossible for me to control how I feel, often…
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We Have a Responsibility to Raise Awareness About Rare Diseases
With Rare Disease Day 2017 coming up tomorrow (Tuesday, Feb. 28), I have been thinking a lot about responsibility. As someone living with a rare disease (idiopathic pulmonary fibrosis, or IPF), I am feeling a bit of…
Asking for Help is Hard, But Worth It!
I always have been fairly independent. When I was little I played outside alone in a small town where the “scary stories” of a big city just didn’t happen. I was lucky enough to buy my…
Much for Which to be Thankful, But I Still Miss the Old Me
I have tried countless times to describe the feeling of breathlessness to the people in my life who love me and want to understand what I am going through. It doesn’t seem to matter, though, how many…
Strategies for Pulmonary Fibrosis Patients’ ‘Hardest Days’
When living with an invisible and chronic illness, such as idiopathic pulmonary fibrosis (IPF), I suppose it’s inevitable that you will have some really hard days (no matter how much you try to find the good…
Sparkling Moments Shine a Bright Light on Invisible Illnesses
A very interesting situation unfolded the other day as I was purchasing something from our local music store. Typically speaking, when most people either see me with my oxygen, or learn that I am living with a…
Will I Miss Out on Significant Life Events?
Please accept my apologies if this post is a little bit of a downer. One of the things I promised myself when I started writing this column was that I would be honest and include the good,…
The Hardest Part of Engaging in Social Support for IPF
There is tons of literature that endorses the idea of connecting with others for support when you’re faced with a chronic illness, such as idiopathic pulmonary fibrosis (IPF). I know that literature very well because I…
The Exhaustion from IPF is More Than Physical
When you think of someone who has a lung disease, such as idiopathic pulmonary fibrosis (IPF), it is easy to understand that physical exhaustion is likely a primary side effect. What may not be so easy…
Pulmonary Fibrosis Diagnosis: Was I Just Unlucky? Hardly
Many of you who have been following my column know that I was lucky enough to return to Australia this past fall for three weeks. “Lucky”… it is such a funny word, because while some may say…
Struggling to Find the Empathy I Once Had
This is difficult for me to write. Since being diagnosed with IPF (Idiopathic Pulmonary Fibrosis), I sometimes struggle to find empathy when others are sick with common ailments such as a cold, sore throat, headache, etc.
Responding to the Comment ‘You Are So Strong’
I have a love-hate relationship with the need to be strong on this journey with idiopathic pulmonary fibrosis. It is important to be strong, but I think it is equally important not to show, or attempt to…
