Wrestling with the Reality of Our PF Diagnoses
It is common for patients and loved ones to struggle with the reality of our diagnosis. For patients, it is tough to take in that we have a terminal illness. It is hard for us to reconcile how tragedies happen to those who have a positive effect on the world. It shakes our sense of how the world is supposed to be, and how we thought our lives would turn out. I get it. I can barely process it myself, and I’m dealing with this reality every moment of every day.
Hard to face our loved one’s reality
It is common for our loved ones to deny our reality in a variety of ways:
- Refusing to acknowledge that things are as bad as they are
- Scrambling to offer solutions that might help, whether they make sense or not
- Focusing on the positives, and not talking about the negatives
- Distancing themselves from us
- Refusing to think or talk about what is happening
- Planning that a cure is right around the corner
The reality is that others love us, and don’t want to accept that we have a terminal illness, or what life will be like without us. They may not know how to process their feelings, so they are unable to join us as we face the severity of our illness.
We are all equipped quite differently to handle emotional pain. Some are less resilient in this area, and do not know how to process deep emotional pain. They may want to be with you emotionally, but find it almost impossible. They feel like they’ll come apart if they face what is happening to your health.
My own difficulty accepting my friend’s diagnosis
I share about this important topic not only as a patient with a terminal illness, but as a friend who had trouble taking in the terminal diagnosis of my best friend, Joany.
Joany and I were best friends for 25 years. Joany was diagnosed with breast cancer 15 years ago. She went through rigorous treatment and remained cancer free for 12 years. She fought it with everything she had, and went through many painful treatments in hopes of beating it again. She loved her husband, children and grandchildren dearly, and did anything to have more time with them.
When her cancer came back four years ago, I went into some denial myself. I immediately focused on her treatment, and believed she would beat it again. When it became obvious she was losing her battle, I still fought accepting it was true. It wasn’t until six months before she passed away that I had the courage to ask, “Joany, are you dying?” She said, “Yes,” and looked a bit surprised that I didn’t already know this. We talked about it, and I apologized for taking so long to be present with her in this reality.
She understood, because that was the kind of loving person she was. I was then able to join with her at a deeper emotional level until she passed away, a little over three years ago. We had many talks about her reality, all the emotions she was feeling, what she needed, and the decisions she had to make.
I share this story because I personally understand how difficult it is to accept that your loved one is dying. I also know how hard it can be as a patient when someone you love dearly can’t face that you are dying. It can be a very lonely place. I so appreciate those who are able to come alongside me with the reality I face.
Hard to accept our diagnosis
Patients also often have trouble accepting the severity of their illness. This is understandable — believe me, I know. There’s always a part of me that thinks maybe I’ll be the exception, maybe my lungs won’t worsen. I’ve heard from spouses who want to talk with their husband or wife about the severity of their illness. They want to discuss options, make wise plans for the future, and connect emotionally about what is happening. When their loved one isn’t able to enter into this discussion it is painful, and leaves them alone in it.
There should be no judgment for a patient or a loved one’s inability to accept the severity of our PF diagnosis. It’s hard, it’s painful, and we’ve never done this before. Everyone is doing the best they can.
I’m glad we have this community to support one another, whether patient or loved one. It helps to know we aren’t alone in our struggles, and we all benefit from the wonderful ideas you share to handle all that comes with a diagnosis of pulmonary fibrosis.
I would love to hear from you.
I really appreciate all of you. What is your response to this column? What type of information and/or encouragement do you need as a patient, caregiver or loved one?
Please share this post with anyone you feel could benefit, or on social media. We’re in this together.
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.