How Do You Tell Others You Have a Terminal Lung Disease?
I’ll be honest, I’m not sure I have a good answer to this question, but I’ll share my journey delivering this message. My journey actually began by telling others I had breast cancer three-and-a-half years ago. Only 10 days elapsed between that awful phone call and my surgery. I first told my husband and we spent a few days processing it and figuring out details. I’m the kind of person who needs to sit with news like that before telling the world, so I waited a few days before I told other family members.
I wanted to tell our two adult children in person. One was nearby and one was in Texas.
A few days before the weekend of my surgery I called our son and said I’d like to visit him for a few days. He asked “What’s wrong?” I wanted to tell him in person, but I couldn’t lie and say there was nothing wrong. It was so painful to tell him I had breast cancer. I flew from California to Texas and spent four days with him, and it was a very sweet time. It helped both of us a lot.
Telling our daughter in person was just as bad. We cried and talked, and cried some more. Seeing their faces and facing their fear about losing their mom was crushing. I tried to reassure them that I had a pretty good prognosis because, even though the cancer was the most aggressive kind, it had not spread to my lymph nodes. We all clung to the hope that surgery followed by chemotherapy and radiation would take care of it.
Then I began the phone calls telling my family and friends. I heard each one’s shock, denial and emotional pain. Over and over. I told my husband I could only tell four people a day; it was just too exhausting. I also had to tell my co-workers and the 30 clients in my counseling practice, because I would be missing work over the next eight months. It was so difficult. This all happened over a period of 10 days.
A year later I had to do it all again, except this time I had to deliver even worse news.
It was hard to find the words to explain that I developed a terminal illness because of the treatment for cancer that was meant to save my life. Having to tell so many people of my diagnosis forced me out of denial and bargaining stage really fast, and was a huge part of my grief process. Telling person after person who cared about me, depended on me, and were terrified they would lose me, was devastating, exhausting and sorrowful.
I didn’t do a good job at it. I never came up with the right words to say in the right way.
Sometimes I just blurted it out. Other times I led into the news in such a meandering way that the other person didn’t even know what I was saying. Then there were times I sugarcoated it, so that the person had no idea just how serious my news was. I don’t beat myself up about my poor delivery. I was in an impossible situation doing the best I could. The reality was that there is no easy way to share news like this. All I could do was the best I could. I’m sure you’ve done the best you could, too.
It is common to wonder the following thoughts when first thinking of telling others about your diagnosis:
- How do I tell my spouse? My children? My friends and coworkers?
- Who do I tell first?
- What do I say? How much do I say?
- Maybe I won’t tell anyone. I can’t do this.
- Do I tell people so they can pray for me?
- Do I share on Facebook? Keep it private?
- Do I tell people as I get worse?
- How do I deal with my own feelings without taking on their feelings?
You know how hard this is. How do you deliver the news that you are dying and nothing can be done? How do you handle their emotions, their feelings? How do you let them have their own feelings knowing you can’t make it all better? These are big questions and big concerns especially for our loved ones, who will be the most impacted. I really do understand. We can’t do this alone. We need God and support from others to get through each part of this process. I’m here as part of your support team.
Kind Words from Me to You …
I know the heartache you feel. I know how hard it is to tell someone you love such terrible news. I know how hard it is to update them as your condition worsens. Please be gentle with yourself as you share bad news or reflect on how you already shared it. You are in an impossible situation. No one does it well. You are doing the best you can. You are brave, even if you don’t feel brave. Reading this column may validate your feelings, but may also bring up pain. Take some time right now to comfort yourself, and get encouragement from God and others in ways that soothe you. You are precious and I’m so sorry we are going through this.
I encourage you to be kind to yourself as you either prepare to tell your loved ones, or as you remember what it was like when you did. I know that some in our lives won’t let themselves feel this reality yet. It takes time for all of us to face this unwanted news.
I hope it was helpful to hear my journey delivering this news. I’d love to hear from you about your journey.
Note: Fibromyalgia News Today 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 Fibromyalgia News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
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Comments
Bill Kracke
Kim - thanks for your article. I approached a little bit differently. I toldy family and friends that I had a lung disease that caused scarring in my lungs (my lungs are turning into leather) and that it's progressive. Then I answered any questions and then got down to the fact that I would likely die from this but it would depend on how fast it progressed. It has been about a year and a half since my diagnosis of IPF and everything has been stable. I didn't provide any of the statistics because they are old and very outdated. I hope your fibrosis can be stabilized as mine seems to be. Thanks again for sharing.
Kim Fredrickson
Hi Bill...thanks so much for your comment. I am so glad you shared the way you told your family about your diagnosis of IPF. Sounds like that was just the right way to let others know for your situation. Unfortunately I'm not stable, and have progressed quickly because my PF came as a result of chemotherapy and radiation treatment for breast cancer. I was pretty well-known in my community (marriage and family therapist, professor, author and public speaker), so needed to let others know quickly. I think it is so important to let others know such difficult news in the way that suits our situation, personality and needs. I really appreciate you taking the time to share your story Bill. Blessings to you.
Dana
Dearest Kim, Thank you for sharing your journey through life with this horrible lung disease. I also have been diagnosed with IPF about 2 years ago. I am on oxygen all night and as needed when I do anything during the day. I am also on Esbriet. It is difficult to find information on items that pertain to IPF/Oxygen and etc. That is why I really appreciate your sharing your journey with others. I read all the letters you post and the posts of others and I feel I learn from everyone of them. Thank you. I appreciate you.
Kim Fredrickson
Hi Dana, thank you for your lovely and encouraging comment. I'm so sorry you've been diagnosed with IPF too. I'm glad my posts have been helpful. That is what I'm hoping for...to somehow balance being real about the everyday struggles, while being as positive as possible. Blessings to you on your journey. We're in this together...
Ellen Arnold
Hi Kim, so much of what you write strikes home for me. Thank you for sharing your experience. The hardest for me has been talking with my 16-year-old son. He knows I have pulmonary fibrosis (mine is related to connective tissue disease, not idiopathic), and he knows I have next to no energy some days. He knows I have to travel out of town to see my specialist every 3 months. He knows I have lots of medicine to take and oxygen when I exercise and sleep. But he does not know how serious it is, not really. One day he found me crying in the car and when I told him I was worried about the future, he said "Mom, it's going to be OK." I asked my therapist if it is honest and fair not to push the truth on my son. His answer has helped me a lot: we are all dying; some of us are just doing it faster than others. We have to use this time to live, in the way that is most meaningful and valuable to us and those we love. I choose to believe that is what we mean we tell people "It's going to be OK." We can make this OK, not that we will be OK healthwise, but we will be OK if we choose love and joy as often as we can in the time we have with our loved ones. Thank you again for your powerful words.
Kim Fredrickson
Dear Ellen, thank you so much for your comment. So sorry it took me a while to get back to you. I was out of town attending my father-in-laws Memorial Service. I'm so glad to know what I'm sharing is helpful to you. I'm so sorry you've been diagnosed with IPF. My children are 28 and 29, and I grieve having to leave them sooner than expected. My heart breaks for you having a 16 year old son, and trying to figure out how much to share with him. You are doing such a wonderful job balancing being real with him, while only sharing what he can handle. I LOVE what your therapist said...you encouraged me with these words too. I'm so glad you shared them with all of us. Thanks you for your very powerful words. Thank your therapist too! Blessings to you Ellen :)
Dana
Dearest Ellen, Thank you for sharing your story. It helped me to read it. I have two sons and I hesitated to tell them also. Now, I can tell they are worried and this approach will help me talk to them about IPF. Thank you! It really will all be okay.
Paula Caravella
I was initially told that I had pulmonary fibrosis last year. After being told that I did not have cancer or COPD I remember saying to my doctor "Not cancer, its all good" Usually I am very diligent in looking into stuff but for some odd reason I took this as nothing more than a serious form of asthma and as long as I did what I needed to do, it was all good. This past Dec I developed what I thought was a nasty cold. After dealing with my primary and not getting any results, I went to my pulmonologist because I knew this was not something that I should play around with. It was then that he really spelled out the severity of what I was dealing with.
Because I was dealing with Graves Disease and needed to get that in order putting me on one of the new drugs for the fibrosis needed to be put on hold. When I see the doctor in March we will begin the process of getting me on the meds.
Hearing the sobering news of what I was facing, after my initial pity party, I told my husband the news when I returned home from the doctors and gave him the news. I have told my children, but not my grandkids at this point. And slowly I am talking to my circle of friends. Not looking for sympathy but let them know what is going on so on those bad days they will know and be able to lend the shoulder when I need it.
I have every plan to fight this to the bitter end and knowing I have the support of family and friends is helpful. Not only for me but also for my husband as I am sure there will be days when he will need to be able to let his guard down to others who will help support him.
Thank you for your letter. Like you I have days when it seems like I am sleeping a lot. But I will continue to put up a good fight and when I need to rest I will do so, knowing my body knows what is best for me.
Tim Bossie
Keep that great attitude! Surround yourself with your family and take each new day as another opportunity to show love.
Kim Fredrickson
Hi Paula, thank you so much for your comment. So sorry it took me a while to respond, I was out of town attending my father-in-laws Memorial Service. I so appreciate you sharing your story and how you are sharing with others about your diagnosis. You have so much to deal with all at one time! I love your perspective of fighting to the bitter end and gathering the support you need for yourself and your husband. We're in this together, and will do the best we can. So glad you shared with all of us.
Linda York
I was diagnosed with IDL after years of them trying to figure it out- after my pulmonary embolism which I narrowly escaped death..I wasn't recovering..and ir was like now what..months went by -first only needed o2 at night, then at night and with activity..late May my situation escalated...going thru a lot of oxygen-had open lung biopsy (wedge surgery) in August and got diagnosis of IDL-told my adult children first (my husband already knew same time I did)..put on high dose of steroids. Long story short- they also misdiagnosed Pulmonary hypertension and I almost died at beginning of December. I was air lifted to another hospital...so now I have 2 fatal diseases to contend with. I am determined to live . I want to see my daughter married and have at least one child. I don't drink or smoke and lead a clean life..have to ask myself at times..how did I get here..the good news, people have been amazing..anf the power of prayer...
Tim Bossie
We love your attitude Linda! Keep it up and look forward to your daughter getting married and playing with that future grandbaby.
Kim Fredrickson
Hi Linda, It was so good to hear from you...You have been through so much with 2 fatal diseases, and several misdiagnoses. Wow...that is so much! I love your focus on wanting to live, with specific goals to see your daughter married and have a grandbaby. These are wonderful goals, and your spirit to live the life you have will carry you through. I'm so glad that God is blessing you through the love and support of others, prayers and His love for you. Me too! He is sustaining both of us!
Nancy BOMFORD
Can I join this conversation from Australia? I am the wife of J. an IPF man. We heard the diagnosis and yes the prognosis when we were together with the specialist after we returned from an overseas holiday. J. had had some breathing difficulties in the last 3 hours of the flight. The specialist answered J's question, "How long have I got?" with a straight answer, "17 months to 5 years". We were shocked and grateful to hear it clearly told.
J is now finding it difficult to walk from room to room, yet today he has been to his U3A Book Club. When I came to pick him up one of his colleagues, asked me what was wrong with him and I said,"He has a terminal lung disease. There is no treatment." She thanked me and told me how much they valued him in the group though he sometimes disliked the book they had been reading, and so made different comments from other members.
Even 11 yr old children in our circle accept he is living now and making each moment count because his life will be shorter. I am pleased he has been able to communicate this so gently and factually.
Tim Bossie
You are definitely welcome Nancy! Thank you for sharing this heartwarming, honest experience.
Kim Fredrickson
Hi Nancy, So fun to have you join us from Australia! I'm so glad that your Doctor was open with you, even though that is such difficult news to hear. I loved what you said, "Even 11 yr old children in our circle accept he is living now and making each moment count because his life will be shorter. I am pleased he has been able to communicate this so gently and factually." Love this...what a beautiful way to live life when you know it will be short. He is blessed to have you by his side. Enjoy every moment!
caroline
Thanks for this column, Kim.
I notice there haven't been any posts here since February 16 2017. Is it still active?
Kim Fredrickson
Thanks Caroline! I write a weekly column. You can read all my weekly posts here: http://pulmonaryfibrosisnews.com/category/just-breathe-compassionate-help-for-the-pf-journey/
Karl
Years ago I learned an important lesson when I was diagnosed with bladder cancer. I was reluctant to blast the news out to the family and asked my wife to let me share the news on my own time.
That was not the fair or right thing to do. She suffered greatly by having to bottle up the news. Knowing what she knew and not being able to share it with the family was tearing her apart. She needed support just as I did. When I finally woke up to the fact that I was being selfish and hurting the most important person in my life, I told her to go ahead. It was a sudden relief for her that made me feel much better.
That's all long past and then I was diagnosed with IPF, this time getting the news from my Dr with my wife. When we got out of the office she was immediately on her phone texting our children while I drove home. We let them handle the grandchildren. We are both much better off taking this approach.
The trauma surrounding IPF diagnosis is enough without putting inhibitors on spreading the news with family. As a IPF patient I feel far worse for those that care and worry about me than I am about what I will/may eventually go through. We are all in a much better place because my wife shared the news quickly. Each family member handled the news in their own way and my wife is not a basket case from bottling up the news. I highly recommend the approach.
Handling friends is different. When friends ask the typical "Hi, how are you" greeting, I simply say "I'm ok, although I was just diagnosed with IPF. How are you?" When they ask "What's that" I tell them it's a fatal, incurable lung disease. When they start making the "I'm sorry" sounds I simply tell them, "That's ok, it is what it is." I'm not one that wants sympathy, just acceptance of reality.
The fact is we'll all die of something. I know that if I don't die of something else first, I'll die of IPF. Frankly, I hope I'll keel over and die of a heart attack mowing the front lawn first but I can't control that. It is what it is.
Kim Fredrickson
Hi Karl,
Loved so much what you shared. Thanks for sharing what you learned both from waiting to tell others, and the resulting burden to your wife, and telling others right away. Appreciate you sharing your wisdom...very helpful. And yes, it is what it is. Accepting this reality makes dealing with this disease much easier. ~ Kim, Author of "Pulmonary Fibrosis Journey: A Counselor and Fellow Patient Walks with You."