It is easy to assume that a disease characterized by fibrotic tissue in the lungs, preventing a patient’s ability to breathe, would affect them physically. This is a very basic description of a cruel, widely misunderstood lung disease called pulmonary fibrosis (PF).

While there are many credible websites filled with a plethora of information on PF, the most informative and helpful pieces of information for me, as a patient living with IPF, have always come through connecting with other patients. That’s why I am excited to be a blog contributor for the IPF Foundation. It is my sincere hope that sharing some experiences of my life with IPF as a young adult will help others navigate this life-threatening lung disease.

While the blog topics will widely vary, I’d be open to hearing from you about helpful topics for you or your loved one affected by IPF. Please feel free to connect with us on social media, including the IPF Foundation Facebook page or right here on the website.

For those in the PF or IPF communities, my name may be familiar to you as I also write a column for Pulmonary Fibrosis News. I plan on continuing this role, and also look forward to helping others further understand the type of pulmonary fibrosis I have, which is “idiopathic”. The disease progression and treatment of IPF can differ from other types of fibrotic lung diseases, and the IPF Foundation is committed to advocating and fundraising for the most promising research to accelerate cures and end IPF. In my opinion, the many different fibrotic lung diseases are still widely misunderstood by the general population and the more information we have, the better to help generate earlier diagnosis’, accelerate treatment options, and fund research. A large component of achieving these goals comes from the willingness of patients to share their stories, so I am honored to be involved with these two organizations doing brilliant work on behalf of all of us.

For my first blog post, and in an effort for new readers to get to know me, I thought I’d begin by dispelling the myth that IPF affects patients only in a physical way. Understandably, this is the most well known way someone could assume a lung disease could affect a patient. That said, there are so many more ways this disease impacts us. I will elaborate on each of these in future blogs as I continue to write for the IPF Foundation, but for now, I want to talk briefly about the different ways this disease has changed my life.

  • Financially: Much of my identity as a young adult was wrapped up in a career that I loved and was good at. Not only did my career help me feel accomplished in helping others—which has always been something I strive for—it’s also given me financially security. Having completed two post-secondary degrees, I was well on my way to paying off student debt when IPF crept into my life three years ago. As a result of my lung disease, I’ve had to reduce my hours at work and establish special accommodations to ensure I am safe, comfortable, and effective in my work. IPF has changed my feeling of financial security; always threatening my ability to earn an income if it flares up, requiring me to be off work for an extended period of time.
  • Socially: No one wants to hear that their family member, friend, or loved one has a life-threatening lung disease. Sometimes when that information is revealed, it can be too much for someone to cope with and they begin to stray away. Sadly, this has happened with some of my friendships. But the exact opposite has happened as well—friends have stepped in at intensely close levels, wanting to care-give and be involved in every aspect of this disease progression. While this latter aspect is appreciated, it is not sustainable, and I’ve had friends burnout from this role and our relationship has never been the same.
  • Mentally: My ability to remember the fine details of a task, or problem-solve without frustration has been drastically affected by IPF. I can only attribute this to the brain-fog many patients experience as a result of being chronically under-oxygenated. It could also be as a result of the medications I am on to help manage this disease. Regardless of the reason, both my mental problem-solving abilities and my memory have been changed as a result of IPF.
  • Emotionally: I pride myself on being able to cope fairly well with my disease, but sometimes it becomes unbearable and all my coping skills are lost. In these moments, I feel so far from normal that I withdraw from my environment and just cry for days. Thankfully, I know the importance of seeking professional help for the emotionally tough days, and I would encourage everyone to do the same.

This is just a quick glimpse into my life and the way IPF has affected me—beyond the presumed physical implications of a lung disease. I look forward to continuing to share more of my story with you as a blogger for the IPF Foundation.

Sincerely,

Charlene Marshall

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