Being diagnosed with pulmonary fibrosis is tough, don’t get me wrong. If I could wave a magic wand and not have PF, I would. As I’ve grieved over the last three and a half years, I’ve come to appreciate some positives related to this diagnosis. To learn more about the grieving process, check out my previous column. I could not see any positives for at least two years.
Over time, my perspective has changed. Please don’t expect to have this outlook if this isn’t how you feel. For me, it has come at the end of my grief cycle — acceptance. Accepting my diagnosis after working through the stages of grief helps me see some positives I couldn’t see before.
I’m able to take care of business
I am grateful to be able to take care of end-of-life details that will help my family enormously once I’m gone. These involve making financial and healthcare decisions, as well as making sure my husband has all my records, passwords, and account information in one place.
I’m thankful that I can leave my loved ones notes and special mementos they will cherish. I even wrote a parenting book for my adult children to help them with parenting once they have children. That was at the top of my list, and I am so glad I accomplished it.
If not for my terminal illness, I wouldn’t have done any of this, thinking I would live another 30 years. I could have easily died in a car accident, and not taken care of these important preparations.
I’m not dying from a more difficult disease
Before I was diagnosed with PF, I battled breast cancer. I went through surgery, chemotherapy, and radiation. It was REALLY hard and painful. I have never felt so horrible as I did when going through chemotherapy. While I was finishing radiation, I helped care for my best friend, Joany, who died of breast cancer. She went through so much pain her last year. I have told my husband on many occasions that I am glad I am going to die from PF rather than cancer.
While PF has its own set of hardships for sure, I am not in the kind of pain and agony I watched my dearest friend go through.
As my friend, Jim Warrick, an IPF patient said in a comment on my last column:
“Kim, I see IPF differently from some others. It is not cancer, nor Parkinson’s, nor Alzheimer’s, etc. It has no cure and that means there are no side effects from the cure. Every day is pretty good. Sure, I don’t want that oxygen and I need a nap every afternoon but this is really small stuff compared to chemo, radiation (you know about this) nor do I have to dread an operation and recovery. I can plan with my wife knowing that one day, probably this year, she will have to take over all the things that I have done. We have time to reflect on our lives together and all the great things we have done and places we have gone. Everyone will die but I know with some accuracy when I will die and that is an advantage. No surprises. IPF is a blessing.”
My thanks to Jim for allowing me to share his perspective.
PF helps us confront our mortality
Part of accepting our diagnosis includes facing our mortality and what it means to us. For some, it will mean trying to repair relationships. For others, it will mean exploring spiritual issues and the afterlife. For still others, it will mean intentionally living life to the fullest. It is amazing how many people act as if they will live forever, even though all of us will die. It is hard to confront our mortality but doing so can be a blessing. Refusing to face it leaves things undone, and robs us of joy we can still experience with the time we have left.
Please know this is a process
As a therapist of 30 years, I have walked with clients through their darkest hours. It is important to grieve through the reality of this diagnosis. There is no timeline or expectation. Don’t hesitate to get help if you get stuck in the grief process or are dealing with depression and anxiety. These responses are normal, and you can get help. Relief from the pain ebbs and flows as we grieve, and gets better over time.
I’d love to hear from you
What jumped out at you from this post? Are you in a place to notice some unexpected positives? Are there other positives you’ve noticed as you reflect on your diagnosis?
Please leave a comment below, and share with those who could benefit via email or on social media.
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.