Since My Diagnosis, I Experience ‘FOMO’ at a Deeper Level

Charlene Marshall avatar

by Charlene Marshall |

Share this article:

Share article via email

younger than 30

When I was growing up, friends, family members, and teachers would tease me about my “fear of missing out” on opportunities. This was because I rarely turned down the chance to try something new. As I got a little older, I often committed to more than I could handle, and in secondary school, I had to ask for help with various leadership roles and responsibilities I’d taken on. However, I continued to volunteer, work multiple part-time jobs, attend professional development and leadership conferences, and participate in extracurricular activities. My friends were right: I had a fear of missing out, also known as “FOMO.”

That time in my life seems so long ago, and unfortunately, I’m now far from being able to maintain the energy level that allowed me to take up every opportunity that came along. Since my diagnosis of idiopathic pulmonary fibrosis (IPF), a chronic lung condition that eventually steals one’s ability to breathe, I’ve had to slow down and limit my commitments. I now value being at home over community activities and enjoy spending time on quiet, nonphysical tasks that give me a feeling of accomplishment.

Join our forums and be part of the Pulmonary Fibrosis News Community!

Even though my physical abilities and energy levels have drastically changed since my IPF diagnosis, I still experience FOMO. However, this fear of missing out isn’t about opportunities related to my career or professional development. I now experience FOMO at a much deeper level because it is likely that IPF will shorten my life span. While it is both painful and emotional to admit that, it is important to be honest about my fears, for myself and my goals, and to help my friends and family accept the reality of this disease.

Since being diagnosed with IPF, my FOMO is about life’s milestones. I now experience a fear of missing out on the following:

  • Summers at the beach: I’ve been lucky to grow up next to a beautiful Great Lake. One of my favorite places is my family’s cottage by the lakefront. I spend long summer weekends with my extended family on the beach there. My grandparents, parents, and my cousins grew up there, and it’s really neat to see our family’s next generation enjoy our special place. I fear missing out on watching them play during summers at the cottage like my cousins and I did.
  • Getting married: I am fiercely independent and have enjoyed “marching to the beat of my own drum.” While getting married isn’t a priority right now, it may become important someday, and the idea of IPF taking that option from me causes me some anxiety and fear.
  • Having a family of my own: I love spending time with kids, and I thought I’d want my own children someday. However, since I’ve made a career of working with children in precarious situations, I now realize how many children are in need of help, and I have considered adopting or fostering kids instead. I fear that IPF could take this away from me, as many factors, including health status, are factored in adoption and fostering applications.
  • Traveling: I’ve written about my passion for travel in previous columns. Right now, I am still healthy enough to travel with some accommodations in place, but I know that as my disease worsens this won’t be possible. Losing my ability to travel is one of my most crippling fears about this disease.
  • Enjoying retirement: Thinking about retirement might seem premature for someone who is only 30. However, when I hear about the reward of retirement for those who have worked hard all of their lives, I want to experience it, too. But I fear that I won’t get to live to retirement age due to my lung disease.

Have you experienced “FOMO” since your diagnosis?


Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


Marilyn avatar


My thinking is enjoy each day to the fullest while you still can. We all should IPF or not. Spend time with your family and friends and think about the present, try not to think of what we might miss and just enjoy life. I am almost 9 years post transplant and yes things have slowed down for me over the years but now I 68 years old and enjoying life just a little slower. I pray for all of you waiting for your miracle of a second chance at life.????????

Charlene Marshall avatar

Charlene Marshall

Hi Marilyn,

You are absolutely right, thank you so much for writing after reading my column and offering such great advice. It's important to live every day to the fullest while we still again, although sometimes that is tough but important to remember. Congratulations about being 9 years post transplant - that is excellent news! I'm so glad you continue to find enjoyment in each day, albeit slower. This is an important lesson to remember, I suppose we dont need to be rushing through life do we? :)

Wishing you well!

James Dawson avatar

James Dawson

Haven't written for quite awhile. Was sick and felt very crummy. The VA Pulmonary Dept doctor(s) had prescribed Ofev after I have quit taking Prednisone. That lasted for 2 months and since I would not to a lung biopsy, the less evasive procedure was to do a lung bronchoscopy. It was found as being unremarkable, and now I am back on 10MG of Prednisone. They have prescribe another anti inflammatory medication which has yet to arrive as well. My question is, I have quit using my bi-pap machine, trying to keep from getting any bacteria build up in my lungs. Even though cleaning the water holder, I am paranoid about using the equipment. I stay on oxygen through the night from an oxygenator bypassing the bi-pap. Are there many people that use a C-pap or By-pap machine that has PF? I don't have IPF, just PF. Can't really find out what the difference is. Without oxygen my levels drop to 80.

Charlene Marshall avatar

Charlene Marshall

Hi James,

Thanks for reading my columns, and for reaching out via the comments. Sorry to hear you were so unwell, that is terrible, especially during the holidays! Sorry to hear such about the difficulty you had after the lung bronch, and that the results were unremarkable. Did the doctor endorse/encourage you to stop using the bi-pap machine? I wouldnt do this without their advice, even though I know it is in an effort to keep bacteria from building up in your lungs. I don't use either Bi-pap or c-pap right now, unless I am in the hospital due to illness but hoepfully someone can reply with some insightful information for you :)



Leave a comment

Fill in the required fields to post. Your email address will not be published.

Your PF Community

Woman laying down reading

Visit the Pulmonary Fibrosis News forums to connect with others in the PF community.

View Forums