The Healing Cycles of Grief
So what is grief? Isn’t it just lots of crying?
That is such a normal question. Grief is the process of letting go of someone or something that was deeply important to you. Grief is very different for each person, and comes in waves of ever-changing emotions. If you don’t know this, you may think you are going crazy. Grief can be triggered from expected and unexpected places.
I’m grieving right now
A recent trip to my pulmonologist confirmed that my lungs have gotten worse. I suspected as much because I’ve been even more tired and am finding it harder to go places, even though I’m using supplemental oxygen 24/7. Each time my lungs worsen I go through cycles of grief and adjustments.
I shared recently that Grief Can be a Friend on This PF Journey. It helps when I understand the different emotions and aspects of grief, and I’d like to share what I’ve learned with you. When going through hardships and devastating losses it is very normal to ask questions such as “Why?” “Why me?” “God, why won’t you…?” plus a lot more. Asking these questions, feeling the emotions, and wishing for a different reality is a normal part of the grief process.
Grief often comes in stages, but not always, or in this order:
Shock and Denial…What? This can’t be happening; This isn’t happening. What do you mean I have a terminal illness? What do you mean there’s nothing you can do? I was confused, discombobulated, grieving and on overload for at least six months when I was given this news 2½ years ago.
Pain and Guilt…Feeling the pain of the loss, and often blaming yourself for not preventing it (even if you had no ability to do so). The pain you feel is emotional, physical and relational.
Bargaining…with God, and with whoever is giving you the bad news (“Wait, I promise I’ll go to church every Sunday, I’ll be a better wife/husband/employee; I’ll eat healthier; Maybe you could do…; Maybe I could do…”)
Anger…at the reality of what has happened, directed at God, others, yourself and the unfairness of getting such a horrible disease. Anger is a normal response to hearing horrible news.
Depression…. once reality has set in, there will be incredible sadness regarding the reality of your diagnosis, the current loss of your health and functioning, and loss of the future you imagined, and eventually your life.
Acceptance and Adjustment…as you accept the reality fully, the pain lessens and you are able to make realistic adjustments and plans to live the life you have to the fullest.
This is quite a list to absorb all at one time. It is important to know the basic stages of grief, and to realize everyone has their own way of grieving
~ Some will be very demonstrative with emotions, others not
~ Some want to grieve alone, others want support
~ Some work out their grief in doing projects
~ Some journal, others do not
~ Some focus on logistics, taking care of business right away, and their emotions hit later
~ For some, grief may be less visible because of an inability to access and/or express emotions.
So, I hope you see that grief and its way of being expressed is unique. Don’t judge your own or anyone else’s way of grieving
Regarding yourself…make sure you allow yourself to grieve in your own way as you live with pulmonary fibrosis. Not facing it will cause you to be stuck, which can lead to anxiety, depression, bitterness, and enjoying the time you have. There are many great resources for you and your loved ones.
Here are some good resources:
The Hardest Peace: Expecting Grace in the Midst of Life’s Hard by Kara Tippetts – Written by a patient who lost her battle with terminal cancer. Kara’s story was one of seeing God in the hard and in the good. It was one of finding grace in the everyday.
When Breath Becomes Air by Paul Kalanithi – Written from the personal point of view of a surgeon who found out he had metastatic lung cancer. It’s a beautifully written, insightful, page-turning book on how we connect as humans and why life – no matter how truncated – is worth living.
Grieving the Losses of Life by Norm Wright – I love this book because he explains that grief comes in many difficult situations, not only death.
Confessions of a Grieving Christian by Zig Ziglar – Very real sharing of a father who lost his daughter, with hope for picking up the pieces again.
I’m working on a book proposal right now to help those dealing with a terminal illness and their families. I want to share how faith and caring for myself with kindness and compassion eases the pain, devastation and grief when facing a terminal illness.
My guess is most of us don’t know how to stay connected to ourselves through self-care, forgiving our past mistakes and failures, while treating ourselves with the kindness and compassion we would give another person who is struggling.
What do you think?
~ Where are you in the grief process?
~ Are you stuck in the grief process? If so what do you need?
~ What is helping you through this grief process?
~ As I work on my book proposal, what would you like me to include that would be truly helpful?
I’d love you to share any comments, questions, or helpful ideas for processing grief with our PF community.
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.
I suffered with diminished lung capacity from ILD over twelve years through many worsening stages, I'd always call it my new normal. I still greave the loss of quality of life, it has taken quite a toll. I won't drag you through the progression of the disease out of empathy for your current condition. But instead will offer some uplifting news, I'm thriving after a lung transplant seven months ago. You have to be a fighter to make it through this path, and I have met many who are exactly that. Bless you and yours, J.
Thank you so much for your comment! From your story I can tell that you know much more than I do about the progression of this disease and 12 years of dealing with this reality before getting your lung transplant. I am so delighted that you got a lung transplant and are thriving. This is uplifting news, and I thank you for taking the time to share it with me and all who read this post. I am a fighter and am hoping for your result as well. Thanks again.
Hi thanks for sharing very interesting information, as I was reading the list I can tell my mother has met all of them, she was diagnosed with pulmonary fibrosis 2/2015, she has 70 yrs old. I left my job to dedicate her more time and throughout this process I saw her go through anger depression, still with pain, but with acceptance of her illness. The only thing she doesn't understand is why she cannot cry, how she used to, I don't have an answer and always forget to ask her pulmonologist. Maybe you might have some information about it. I like to keep informed. Thanks one more time.
Hi Lorena, Thanks so much for your comment. I'm so glad this post was helpful, and that it matches the process you've seen your Mom go through. What a blessing to her that you are there to care for her. I know this is a gift of love on your part. I'm afraid that I don't know any information about your Mom's symptom of not being able to cry like she used to. My ability to cry is still going strong! Thanks for taking the time to share with us. Blessings to you and your Mom.
Thanks so much for posting this. It helps a lot to read, and reread. I'm a 54 year old dad of two girls, 19 & 20 and was diagnosed with IPF in July of 2016. I'm still active and doing well with no need for oxygen thus far. After the initial shock, it took a few days for me to let my emotion out with my Fiancé....."why?, it was unfair, I wasn't a bad person...." I cried for a long while an let it all out and that felt good, but a few months later those emotions came flooding back and I felt despair. By my side, my Fiancé reminded me that it's OK for me to feel whatever I feel when I am feeling it and that grieving is a process, unique to everyone. I’m learning that I don’t have to barricade myself from my emotion and it makes every day healthier because those feelings are not welling up inside me. I wake every morning with a new found appreciation for my beautiful life and don’t want to take one day for granted. I clearly see that despite this illness, I have been truly blessed to have this life with all my girls, family and friends and that is what inspires me to be present as a father, son, brother, and Beau, not a patient. I have to be.
Dear Al, thanks so much for sharing your response to this post and your story. I love your words,"my Fiancé reminded me that it’s OK for me to feel whatever I feel when I am feeling it and that grieving is a process, unique to everyone. I’m learning that I don’t have to barricade myself from my emotion and it makes every day healthier because those feelings are not welling up inside me." I'm so glad you've found a way to release those emotions in a cleansing way. What a wonderful, wise and supportive Fiance'! I love your resolve to enjoy the life and moments you have by being present with those dear to you and soaking in the good things happening in your life. Many blessings to you!
Sadly I understand grief and stages to well. My 42 year old husband passed away of Interstial Lung Disease in July . He was DX 6 years ago, and we went through every stage, together . Denial was hard for both of us . Anger , well anger felt good. I witness him go through ever phase, he lost so much . When he excepted death was coming , every day was a roller coaster. Days he prayed for death. He told me he was not afraid , he just didn't want to leave me and our kids. I took care of my sweet husband every single day for years. Spent every second of every day with him. Now he is gone , I'm grieving so many things. Grieving for the loss of my husband , grieving for the life my husband had to suffer, his life he didn't get to experience. Grieving what me and the kids lost. Again anger is good because it's better than feeling nothing at all.
Lisa, I so sorry to hear your husband passed away, and so young. I so appreciate your comment because you share so powerfully the grief you and your children continue to go through after his passing. What a blessing you were to him all those years when he needed your presence and comfort so much. I'm so sorry for the sorrow you are experiencing. Sending hugs your way, Kim
I lost my son to a motorcycle accident in Thailand Jan. 1, 2016. I am having an awful time. I was in the anger phase for so long, and now I think I am in the depression stage. This time of year seems to make it worse. I didn't get to attend his funeral. I am poor, could not go to Thailand. Could not afford to bring him home. I am a firm believer that a person should be where their heart is, and his was in Thailand with his two daughters Mary 7 and Mira 5. So I ask that his ashes be spread where they play so he would always be with them. I am 70, I don't know if I will live long enough to get to the acceptance phase. He was my only son. I have two daughters in different parts of the USA.
All of us at PFNews is truly sorry for your loss Mary. Losing a child is one of the most painful times in a parents life. I realize there are no words we can say that can help you, but would encourage you to keep looking ahead to tomorrow, cry through your memories, laugh when you can, and talk to your daughters as much as you can. Don't feel ashamed about your grief, but allow it to go its course. Will you ever accept it? I don't think parents every accept it, but they do get past the grief. I hope you are able to with the help of your family and friends.
Dear Mary...so terribly sorry for the loss of your son one year ago. It makes sense that the year anniversary of his passing is especially hard. I encourage you to be as kind and compassionate to yourself as you can. I second Tim's excellent advice. Sending you prayers at this difficult time.
I was diagnosed 2/18/2009 after constant coughing for over a year. My mother died of this in 1986; I was shocked at how little treatment had advanced in over 20 years.
Anyway, I was diagnosed, they ( U of Michigan) wanted to send me home with oxygen after diagnosis surgery as every time I removed the nasal cannula my o2 went below 90. Initially, I was scheduled for a minimal invasive biopsy that resulted in an unexpected open chest surgery (I thought I would be home same day with a tube sample that turned into open chest surgery with a lung excision and major surgery to remove/excise the left lung from the abdominal wall; the fibrosis had gone beyond the lung wall and had adhered to the abdominal wall).
Anyway, when I talked them into removing a chest tube and then measure my o2; which after walking went to over 90, I started working out, lost 50 pounds and kept going at it hard for several years.
U of Michigan folks were amazed and I was one of their favorite test patients in many, many studies. I kept O2 up regardless from 2009 until 23016 and I thought I was the odd one out on the normal progression of this terrible disease.
Now comes 2017, coughing increases, O2 goes down, and I feel like crap.
I now need oxygen when working out and when sleeping. I cannot workout much compared to what I was doing. I am going down by the week and am considering FDA unapproved stem cell treatments. I cannot even walk up a flight of stairs without oxygen!
Al, thanks so much for sharing your story. You are amazing! So sorry for the recent decline. It is so hard when that happens. I know the feeling. Hang in there, my PF friend.