grief 101: walking through the 5 stages of grief after a diagnosis
The doctor hands you a stack of papers. She’s circled and highlighted the name of the diagnosis. She’s asked you to read through it and call if you have questions.
You drive home, and everyone else is carrying on with their lives. Kids kick soccer balls in the green field, traffic chugs along, someone has cranked the top 40’s and hangs a limp cigarette out their window.
You are desperately trying to keep it together, but tears leak from your eyes, even though the sun is beating down, and nothing feels like it’s actually changed. You know that when you arrive at home, it will hit you harder. And you’ll have to tell people now, break the awful news again and again. Some you will call that night, others in a few weeks. You just want it to be over. You just want to know: will you all survive this?
The unknown is crushing you, the shock is making you ache. Suddenly the thawing chicken breast in the fridge seems like the worst possible dinner idea. You might never eat again. Your nerves are wobbly, sparking, threatening to ignite.
This is the hard part. There is no immediate escape, the answers to your questions might make you feel sick, you might be crying for months on end.
This is the hardest part. Stepping into a new season, fully walking in, knowing that you can’t turn back.
You can make a choice: do it well, lean on those around you, be real about your grief, press into your God, immerse yourself in places of peace, and understand that this will be tough. Some of the hardest steps include letting go and leaning into this season. It is much harder to thrash against the waves. You just have to be carried.
Or, you can let fear wash over you, and it will, with surprising force. It will knock you right over. You will feel like you’re falling, like someone pushed you off a cliff, and your stomach will drop again and again as the name of the diagnosis rolls around on your tongue and through your mind. It will feel like no one cares, and nothing will help alleviate the pain. You will be swallowed whole.
But you can choose to come out of that fear. It will take great effort, and you may need to push past the fear every minute of every day. But eventually by taking it one day at a time, and letting that bit of denial soothe the quickly fraying edges of your world, you will move through the stages, you will move on.
Depending on the severity of the diagnosis, your personality, support network, belief system, and other important factors, these stages can stretch on or be cut short. They can overlap and they can resurface. There is a pattern, but there isn’t a formula for grief.
It’s not happening, it’s not real, there’s been a mistake. The cool comforter on your bed will draw you under, for hours on end. Darkness. Quiet. You just want to be left alone. Sleep is the most incredible escape. You can’t face it head on yet, it just doesn’t work like that. Your body is roiling with shock, and it needs to catch up. It is so easy to just push everything away. The funny thing is, you might be craving support and shoulders to lean on, but you just can’t bring yourself to tell people. Telling them will make it real. Isolation goes hand in hand with denial. No sorry looking stares, no sympathy, not yet.
Friends and Family: If you are close to the family and have heard the news in the first week of receiving diagnosis, offer hands on support. Take the kids to school, drop off meals, leave flowers on the doorstep, write words in a card, but don’t try to talk through this stage with the family. Denying the new diagnosis is a coping mechanism, and it’s actually okay. It protects the body and mind from incredible shock. Don’t ask how they are doing. They are miserable. It may last a few days, a few weeks, but they will come out of it. Don’t ask to help, or send a text message offering something. Just do it.
You have no idea what I’m going through. You are so selfish. You take everything for granted. Why are you smoking here, you asshole? I can’t believe you are complaining about that. What is your problem?
The doctor who diagnosed your loved one is a huge target for this anger. You might want to pull their hair and scream: What kind of job is this? How could you ruin our lives like this? Friends, family, strangers, all become moving targets for your thoughts and sometimes words. The pain has re-emerged in a weird, ugly way and is starting to feel very real. Suddenly anyone who hasn’t experienced grief or loss is shut out. They just don’t understand, you say. When they complain about little things, or even good thing that your child might never do (i.e: I hope he’s not an early walker like his dad! He’s getting into everything as it is!” ), you will rage inside.
Friends and Family: Don’t stay away, but be prepared. Be careful with your words. Don’t pretend it’s not happening, but don’t try to change the subject or talk about something “happy.” Don’t offer ideas to cope, unless you have been there yourself, but even then, it is so hard to receive at this point. Everything just feels tight, like a sealed clam shell. Don’t crack your way in. Just be available, offering practical and emotional support. There are a lot of “don’ts” in this stage, but hold the space, hold on, even when they don’t respond or reply. They are listening.
This is when you start searching for God, even if you don’t know Him. You want to make a deal. You want to believe that someone else is in control, but it feels awfully hard to trust, now that you’ve been given a life altering diagnosis. You start regretting things: why did we wait so long, why didn’t I see this sooner, I shouldn’t have brought this up, why is this happening to us?
Friends and Family: If the family believes in God, offer music, books, scripture art prints in the mail, or things that have helped you in an awful and vulnerable time but don’t suggest reading the books or playing the song. Just drop them off at the front door. They might pick up that book a year later, but they will appreciate the outreach. Send along your prayers, don’t just say you are praying. Now is not the time for fillers (i.e: I’m so sorry, Let me know if there’s anything I can do, God won’t give you more than you can handle, Just hold on.)
There is a deep sadness that invades your home, permeates all the places where joy once lived. It is overwhelming. This is the time of weeping, of grieving the loss of “normalcy”, understanding the implications of the diagnosis, the road ahead. Everything feels achy. You might be imagining what life will look like if: your child will never walk, the odds of survival are 1%, your child will never talk, your loved one will experience immense pain. If it’s progressive, this is a whole other world of grief. The unknown journey ahead can be long and filled with so much loss along the way. The thought of watching your loved one lose abilities, struggle, suffer? This is indeed a time of lamenting.
You may have to go to those places that you once denied, and walk into the very darkness that you are afraid of. And when you get there, know that you are not alone. If you believe in God, it is clearly written in the Bible that: the Lord goes before you. He will not leave you or forsake you (Deut. 31:8).
Friends and Family: Don’t try to lure the family out of this stage. Sometimes we forget that grief needs to be acknowledged. And sometimes we forget that it’s okay to grieve together. It will not make the family any more upset, it will not prolong the grief, but it will speak to the family: I see you and you are not forgotten. A diagnosis may not mean death, but it is still a major shift in life, it’s still pain, it’s still a journey. There is a time for lamenting, and there is a time for healing too.
In the Bible, Jeremiah 6:26 reads:
You who are my people, weep with me for it is time.
Put on sackcloth and roll in ashes.
Cry as you would for the loss of an only child.
The time for bitter tears has come.
This really is the time to sit in the dust and drain the body of grief. Sometimes every few minutes, sometimes twice a day. Day by the intensity will gradually wane, but don’t rush it. Keep feeding them, offer a housecleaning service, gift cards, hugs, thoughtful gestures and don’t be afraid to weep with them.
A painful barb, and a theme that travels through the whole grieving process, is recognizing that other people go on with their lives. That some don’t seem to care. Even if you don’t have the words, say something. The last thing the family needs to feel is alone. The act of sitting in grief with someone is powerful. If you are very close with the family, remember that acknowledging the pain of others, when you want to blast your kid’s first steps or their adorable smiles across social media, is incredibly supportive in this time. Putting aside your life, your world for even a day, can be an extravagant display of affection, compassion and understanding.
Some of the most powerful words you can say: I am with you in this, carrying your grief as best as I can. I see what you are going through, and I mourn with you. I’m carving out a place for your in my life, a time to pray, to cook for you, to reflect, to ask others to pray for you. I care about you and your family so much, and my heart breaks with yours. I carry a small portion of grief in comparison to yours, for I know that you are carrying so much more, but I am with you. You are not forgotten in this place. I am not unavailable to you, no matter what, my life is not too full to walk through this season with you. Not a moment goes by where I’m not thinking of you and praying for you.
Vulnerability, tenderness, compassion, and openness are all qualities that humankind carries. But to truly tap into those qualities, well, it takes a great and often painful shift in life.
That shift makes sure you acknowledge that everything has changed. You are awakened in the worst and best possible way. Life is hard, but life is to be savoured. I think those that go through grief or trauma really understand the art of savouring life.
You might look at photos before the diagnosis, and feel a new kind of grief, a longing, or as the Welsh put it: hiraeth. Hiraeth is the nostalgia, the yearning, the grief for the lost places of your past.
Things will not be the same. You cannot go back. Grief doesn’t have to destroy you, but even when you move on, it will always be a part of your story. You have been shaped, rubbed hard against the stone. You have changed. But you can experience life again, and the changes that have taken place in your heart can be used for bigger, beautiful things when you are ready.
The diagnosis may have changed a lot in your life, but you are learning to live with it. Perhaps it’s a wheelchair, new equipment, medications, nursing care, a hospice or hospital. These things may no longer be resisted, but accepted as tools to help your loved one. Sometimes that old twinge of grief will come when you see your child or spouse in a wheelchair for the first time. Bumps in the road will come along: extended hospital visits, relapse, advanced care, but it will get “easier” to move forward. Acceptance is a beautiful, holy thing.
Friends and Family: Life does move on. But this might take quite some time. Follow the cues of the family. If they celebrate life, if they laugh and throw parties, if they want to know about your family, then this is a signal that they are accepting their new life. When they ask how you are, they really want to know the deep things. They want to connect with you in a more meaningful way. Their story is out in the open. When you hide yours as a way to protect them, or to keep yourself from being vulnerable, it can actually hurt. They don’t want to feel inferior or broken because things have turned out differently than they expected. They can handle your petty complaints, for the most part! Don’t apologize. They don’t always want to be asked: how are you doing, really? Trust that they will share with you when they want to. But at some point, they don’t want it to be about them anymore.
And don’t forget, they love you and your support even if they can’t put it into words.
It’s been two years since my daughter was diagnosed, and I have finally reached this stage of acceptance. I am thankful, although I still experience grief, as it has woven it’s way into our lives. But instead of walking down the street with uncontrollable tears streaming off my cheeks when I see a child the same age as Florence running, I whisper: You will run one day too, sweetheart. One day, one fine, glorious day, we will see our baby girl run, dance, and dart between our legs. This is acceptance too.
I realize I can’t change the past, or even the current journey we are on. But I can choose to hope.
I can accept that it’s been two years and my daughter has not gotten better, but rather has declined in health. This doesn’t mean I don’t grapple with sadness, anger, fear or isolation. I can’t change the past or future, but I can rest in the assurance that my God holds my whole world, my whole family, in His hands.
I am not a clinical counsellor or anything fancy like that, but I have experienced the grief of receiving a terminal diagnosis for our daughter. We learned and are learning a lot along the way. This may not exactly reflect your experience with receiving a diagnosis, but I do hope it’s helpful.