Charlene 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.Being diagnosed with a life-threatening illness shakes you to your core. Not only does it leave you feeling confused, vulnerable, scared, and at times, hopeless, it also leaves your family feeling equally devastated. Then there…
If you’ve been reading my columns the past few months, it is no secret that I’m noticing a huge difference in my physical abilities as the progression of my idiopathic pulmonary fibrosis (IPF) charges on. I often write about how tired I am physically, how emotionally drained I…
The definition of patient advocacy can vary from patient to patient, and can include many different roles for those involved in any type of chronic illness advocacy campaign or project. What also varies is the patients’ comfort level when getting involved in different initiatives that might focus on…
The body and mind can do such strange things in response to stress. More and more I am hearing about the physical impact of stress on friends, colleagues and family members requesting a break from work, or managing to recover quickly from a cold only to become sick…
In my experience, online virtual support groups are growing — allowing conversations among people living with various sensitivities or intolerances, to those diagnosed with cancer, lung diseases, etc. It’s really interesting to think of how peer support has changed in the past decade with internet use. Personally, I scroll through…
I have grown accustomed to using supplemental oxygen and often overlook people who stare at me, wondering about the young adult who seemingly cannot breathe. While I don’t seem to notice when people stare, it was apparent to friends with me last week. Multiple people asked me,…
I have read many articles on young adults living with a chronic illness since being diagnosed with idiopathic pulmonary fibrosis (IPF). Some I can relate to, while others don’t resonate with me at all. The articles I find most beneficial are ones that suggest tangible tools to help people cope…
As much as I desperately want to be involved in my friends’ social lives and participate in work events, charity fundraisers, and milestone celebrations such as weddings, stag and does, and baby showers, I find that lately, I have been feeling the stress of obligations. What is…
Trust me when I say that this column does not come without a lot of behind–the–scenes work to try to change my thinking so I can offer a more positive message. I still can’t say I practice what I preach. But I do want to share an…
When I sit down to write these columns, I often reflect on something that has been difficult throughout my journey with idiopathic pulmonary fibrosis (IPF). I usually focus on something that has changed as a result of my disease — something I have lost, or something that…
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