Wrestling with the Reality of Our PF Diagnoses

Wrestling with the Reality of Our PF Diagnoses

Just breathe, passionate help for the PF journey
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.

Kim and Joany
Joany (left) and Kim.

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.

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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.

27 comments

  1. Ann says:

    This is a cruel illness, and what makes it even more cruel is the way it progresses. It’s seeing my husband be stable, then rapidly lose a lot of ground, and what it does to him when I have to do what he can’t do. Trying to get on a lung transplant list isn’t easy, as we are finding out. I pray for everyone with this terrible condition.

    • Dear Ann…you are so right, it is a cruel illness. Your comment also reminds us patients how incredibly difficult it is on our loved ones in so many ways. Your nubby is blessed to have you by his side, but I’m so sorry it is so hard for you too. Prayers for you too.

  2. Leslee Edison says:

    Thank you for sharing your story, Kim. I have read some of your other stories. You are an amazing woman in the way you are handling your disease.

    I was diagnosed with IPF in October of 2015. I am taking Ofev, and so far the IPF is remaining stable. I believe that because I was fairly healthy and was prescribed Ofev while the disease was in it’s early stages, are big reasons for the stability. I try to do all that I can through exercise, diet, and staying away from those who are sick to stay as healthy as I can. I am 70 years old, and I know at some point in this disease I will have a decline. My husband is the one who thinks I am the exception and that my lungs won’t worsen. My son doesn’t want to talk about it. In the last few months, my daughter is finally understanding that I need to limit the number of activities I plan in a day, and can’t do everything I used to do. Reality tells me that I will not always remain stable, but I am taking it one day at a time.

    Thank you for reading my story. Take care.

    Leslee

    • Leslee…thanks so much for sharing your story. I appreciate your encouragement about my columns being helpful 🙂

      I’m so glad to hear that Ofev is helping you stay stable…that is so wonderful! I love your way of taking care of yourself in all the ways you can. Love that you are enjoying every day, while placing the limits you need to.

  3. Maribel Gonzalez says:

    Kim:
    It has been a blessing reading your column. I appreciate your honesty and openness talking about your journey. I have been through being on denial to being too blunt about my disease. Reading your articles has helped me communicate with my family and friends better.
    I think of you and admire your strength and desire to help others. May God bless you and give you the courage to keep fighting.
    Sincerely, Maribel

    • Thank you so much, Maribel. I consider it a privilege to write this column, and it does my heart good to know they have been helpful to you. God does help me to keep going and fighting. Many blessings to you as well 🙂

  4. Peter Yourkevich says:

    I would like to see an article on how to prepare your spouse and family, both emotionally and financially to be prepared to go on without you. It’s difficult to find a way to bring this up for me and I’m sure for many others. A checklist of the issues to covered would be helpful as well as a template for a financial plan for the future of those left behind.

  5. Faye says:

    You wrote that all so Beautifully, Thank you for sharing your story💕… I have Pulmonary Fibrosis, And I think I’m the exception 😜😘.., lol… my husband copes with this by humor😇, most can’t understand that, but I do, and I love that he still makes me laugh.

    • Thanks so much Faye! God Bless your husband! Humor is most welcome and lightens our moods. It’s true it’s hard for others sometimes when I speak so frankly about what I’m going through, and the reality of what lies ahead. It’s so good we all understand one another!!!

  6. Kathleen Woodby says:

    IPF snuck up on us. My husband is a retired family practice doc. He refused to believe his breathing difficulty was more than allergies. Took a year for him to get it checked out. He needed 3 LPM oxygen then.
    Before the lung biopsy he already knew what it was and told me he wouldn’t be around much longer. I was angry and didn’t believe it.

    He’s at 8 LPM now, just 5 months later. It’s still hard to believe how short our time is. We’re still waiting to get Esbriet, but know it’s probably too late. He cancelled his July appointment at Vanderbilt and we started Hospice.
    Hardest thing for me is to hear him say there’s nothing that can be done and to accept it.
    I watched my Dad die in 3 months from lung cancer after diagnosis. But he had been a smoker. Terry never smoked. I think that’s what makes this disease so sucky. No known reason and no cure. He’s not even 70!!!

    • Hi Kathleen, You and your family have gone through so much! The diagnosis is so ridiculously hard to handle for both patients and families. So sorry his disease has moved so quickly. My heart goes out to you and your husband. Saying a prayer for you both right now. Hugs

  7. Paula Caravella says:

    I was diagnosed Dec. 2015, it was not until Jan 2017 that I had the reality of PF slapped in my face. Prior I thought of it as nothing more than a bad case of asthma. I just recently also found out that I have Sarcoidosis and my dr. is holding back on putting me on Esbriet until he goes over the blood tests and my last CT.
    I am not sure what will be discussed and talked to my family that there might be a possibility that this additional issue might reduce the impact of being put on the Esbriet. My family does not want to talk about it, and say that I need to just wait until my dr. talks to me. But I try to explain to them that I have to acknowledge the possibility as I do not want to be blindsided by such news.
    I know my family is scared but sometimes I wish they would just let me vent my fears without telling me not to get worried or talk about something that has not happened.
    I don’t think they totally get that I am dealing not only with my own mortality, but also wanting to make sure that they will be ok too.

    • Dear Paula, so sorry you are dealing with so much. I understand it, but it is so hard that your family isn’t able to let you vent your fears. I’m sure they are hoping that the worst is not true. I’m like you, I’d rather face reality and then come up with ways to cope than be blind-sided. I’m really glad you left a comment. Know you are not alone.

  8. Susan Scott says:

    Thank you Kim. I’m struggling with this now. My IPF is advancing quickly so I don’t believe I’ll make it to a transplant evaluation in time. My husband is my primary caregiver and we are finally at a point of having the hard conversations. I’m glad for that but sad at the same time. It’s very hard to think of my family going on without me. I know it sounds very selfish but I’ve learned it’s ok to have those feelings too. God Bless all going thru this.

    • Hello Susan, Such scary realities to face. So sorry your pf is advancing quickly. I’m glad you’re able to talk with your husband as you face decisions.I know what you mean about how difficult it is to think of your family going on without you. That isn’t selfish at all…just normal. God bless you too.

  9. Debra Erickson says:

    Thank you so much for your article, I felt like you were writing my experiences thus far in my journey with IPF. I am very newly diagnosed by thoracotomy in August and began Ofev soon therafter. Everything is so new, the oxygen, the side effects from the Ofev, the difficulty my loved ones have in their acceptance of my and their “new normal”. You spoke so eloquently to express both “patient” and loved ones emotional reponse. I often feel alone but do understand that it is in a way an expression of how much I mean to them in their inability to (at this time) talk about what is so real to me, it takes time to process and everyone processes at a different speed. God is still so good! I have a wonderful medical team and continue to work full-time as a nurse case manager, my oxygen is often an ice breaker with some clients. Thank you again for your blog it is a blessing.

    • Hi Debra, I’m so glad that my column was helpful, and put into words your experience. There is SO MUCH to adjust to when newly diagnosed. I’m so glad you are still able to minister to others as a nurse case manager. I’m sure your patients are drawn to you because they know you understand medical challenges, and yet, still go on! Yes, God is still so good. Check out my column coming out this Tuesday. Blessings to you…

      • Zelick Altman says:

        I’ve been diagnosed with IPF for over a year. Fortunately I still feel pretty well and taking OFEV so have some hope that I’ll continue this way for a while. But I know what the end game looks like. My brother died of IPF two years ago. I saw first hand the decline in his health and then the horrible experience he had with a failed lung transplant.

        But, who do you talk to about the reality of your situation? Do I want to make my wife more upset than she already is. Do I want my children to feel anxious about my health when I know I will be putting them through a lot of grief in the future?

        In the end, I think it’s best not to talk about it. That may be against the advice of professionals, but I believe in preparing for the worst and hope for the best. Enjoy every day as much as you can and avoid as much as possible thinking or talking about the inevitable.

        • Hi Zelick, I appreciate you sharing with us. I’m glad you are stable and hanging in there. I’m glad you shared what you did. We are all so different, and while being more upfront is good for some, it isn’t for others. It sounds like you have settled on a strategy based on your own situation, which is very good. So sorry about the death of your brother. Take Good Care, Kim

  10. Kathy Bruner says:

    I was diagnosed in 2016, but had it in 2015. I have been on Esbriet since July 2016. So far, the disease hasn’t progressed. I can only take two pills at most meals, but they seem to be slowing the progression. Three pills really effected my quality of life, but I do take them occasionally.
    As I am not on oxygen and look good, everyone thinks I am doing fine. I guess I am and have kind of been in denial. I haven’t gotten done,everything I need to do. Praying I get to finish up things.I’m not really afraid to die I just don’t know how my family can handle things when I am gone.

    • Hi Kathy, So glad the Esbriet is helping. That is wonderful. Enjoy every moment, and finish up the things that are important to you. I know the concerns of how family will handle it when we are gone. Sounds like you’re only in denial a bit! Ha! Accepting reality comes in stages, and there is nothing wrong with that! Blessings to you, Kathy…

  11. Alice says:

    My grandmother, grandfather, three uncles, two aunts, my mother, and two cousins all died with PF. In every case, the disease caused them some difficulty but once they had the biopsy to confirm that they had PF, they went downhill fast and died within twelve months. We remaining siblings and cousins won’t tell our doctors about our family history for fear they will request biopsies. We are all also afraid of losing our insurance benefits due to “pre-existing” conditions (once the law is changed). Two of our aunts refused biopsies. They lived with PF for about ten years and lived to be a little over 80. The others all died in their fifties and sixties.
    My question: have any of you readers had the same experiences?

    • Dear Alice, what a family history. I appreciate you sharing since maybe others have had similar experiences. I salute you and your relatives making decisions that work for you. I did a broncoscopy with a tiny biopsy rather than the full on external biopsy because of the risks. I know many people can have complications because of them. I hope others will respond to your excellent question.

  12. Robin Ives says:

    What a moving article Kim – you have really helped me cope better with my husband’s disease. He worries a lot and some days it feels like we talk only about that. I try to encourage him and think positively but inside I find myself sick with worry. He has been on Esbriet about a year & 1/2 and the dr’s say that his disease is about the same. I notice he is getting very thin and tends not to eat much. His disease is believed to be partially caused by acid reflux. We have just purchased a smaller home and are taking our time moving into this smaller, one story house. Financially once we sell the larger home and move, I will be able to handle the finances with my job and this will allow him a the flexibility to lessen his hours at work should he need to. The move is difficult and we are so thankful our grown children are there helping and we are so thankful that we are able to do it very slowly so we can do some things to the new home and move in smaller trips. Your articles have really kept me focused on the importance of my role and I am so thankful I found you!! You are a blessing to me.

    • Hi Robin, thanks so much for your encouragement. It does my heart good to know that my columns are a help to you. That’s what I’ve been hoping! I’m so glad about your new home, and that you are getting the help you need. Super glad to hear some financial stress will be eased soon. That will help so much. You have so much courage!

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