Grief, Loss, and Intolerance of Uncertainty

Understanding Grief / Understanding Grief : Eleanor Haley



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I worry because I have a low tolerance for not knowing everything will be okay. It's as simple as that. I am uneasy about a margin of error, an unlikely event, the single-digit percentage of times things go wrong. Not in all situations, but in many and, particularly, in those that involve life and death. 

People very reasonably say to me:

"The chances of that terrible thing happening are so low. Why do you worry?"

To which I usually respond:

"Well, if it has to happen to someone, why shouldn't it be me?" 

I'm not sure whether I've always taken such issue with the unknown, but I'm certain that being exposed to loss has exacerbated my fears. 

When you've experienced loss, you learn that sometimes you are the person the bad things happen to. This can make you feel paralyzingly vulnerable. Perhaps loss shattered many of the assumptions you held about the world being a safe place. Now, you worry because you're not sure what set of rules the world plays by. 

Loss and grief can teach you many lessons. Some of these lessons are useful and constructive, while others make life feel a little more challenging.


Intolerance of Uncertainty

There's a highly researched and studied concept related to this discussion called "Intolerance of Uncertainty." We briefly described this concept in an article about anxiety in grief:

"Some people have a very hard time dealing with even the remote possibility of something bad happening. Even if the odds of an event occurring are very low, the uncertainty of whether or not it will happen is enough to cause intense anxiety and distress."

Unsurprisingly, intolerance of uncertainty is highly correlated with many forms of anxiety disorders.


Intolerance of Uncertainty in Grief

Another reason fear and anxiety towards unknowns in the future feels especially relevant in grief is that life after loss is unprecedented. Many people will feel they've veered far from the path of what feels normal and expected, so how could they possibly count on anything in the future? Further, some people also struggle with intolerance of ambiguity in the present. So everything—the grief, anxiety, ambiguity, uncertainty, and fear—all gets mixed-up in one unappetizing stress strew.

intolerance of uncertainty and intolerance of ambiguity

How intolerance of uncertainty manifests depends a lot on the person. For me, it feels like a significant distraction that prevents me from being fully present in my life. There's often a little voice that pulls me away from otherwise contented moments saying:

"Don't forget, something could steal away everything you love in a heartbeat."

So rather than feeling safe and comfortable tucked in at night in my little house with my little family, I often feel scared instead. 

Perhaps you can't relate to this concept at all, and, if so, that's good. That's one less challenge to deal with in your grief. But if you're struggling with anxiety and fear, I encourage you to consider how loss has impacted your feelings about uncertainty and the unknown. You may find that your experiences with loss, trauma, and grief have led you to believe that the other shoe will always drop, which has you constantly feeling on edge.

If you're struggling with intolerance of uncertainty, fear, and anxiety in grief, here are a few related articles:

We invite you to share your experiences, questions, and resource suggestions with the WYG community in the discussion section below.

We invite you to share your experiences, questions, and resource suggestions with the WYG community in the discussion section below.

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26 Comments on "Grief, Loss, and Intolerance of Uncertainty"

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  1. D  April 30, 2022 at 7:45 am Reply

    A lot of wanting to hold everyone very tight. Intolerance of loss. Anxiety over limited time with the people and animals I love. Knowing time is finite and there is no way of knowing, “what’s next?” There is no control in this life, only trust in God. He alone and His grace and love can provide certainty for an uncertain world.

  2. Sharon  October 23, 2021 at 8:51 pm Reply

    Thank you for this article. I lost my Dad suddenly, just over a month ago and I don’t know how to be anymore. I don’t know who I am and all of my dreams and aspirations have shifted into a sea of uncertainty. The world is now a very scary place and everything is different. I feel a crippling sense of uncertainty and though I experience tiny moments of joy, it quickly moves into feelings of doubt, fear and mistrust. I don’t trust my judgement at the moment and feel immensely guilty for not doing something to prevent this huge loss. I know it’s only been a few weeks and maybe this is to be expected but I can’t imagine how I am supposed to navigate through this whole thing and support my mum who has lost her life partner and best friend.

  3. kath  July 29, 2021 at 10:20 pm Reply

    Wow! This intolerance of uuncertainty really makes sense with my life! Than you, Elizabeth, for sharing your vulnerability. I feel a bit less “crazy” and a bit more understood after reading this article.

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  4. Grace  May 13, 2021 at 12:24 pm Reply

    Loss of husband of 25 yrs in June 2017. 3 previous years he declined into frontal temporal lobe dementia after a brain bleed they thought drs had sealed, but it continued slow leaking. Discovered when his recovery from the bleed stopped & damage was irreversible.

    We each were married before, each had grown children. Both recently out of unhappy marriages.

    We met in 1990, married in ’92 & were best friends etc. thereafter. People would often ask if we were newlyweds.

    I’m a retired nurse & was his sole CG the 1st yr. I’ve had MS for many years. Chuck (HUSB)
    was physically larger & stronger than I.

    Both our doctors had been worried about his care being too much for me. So, after he began losing more & more touch with reality, I was forced to place him in a facility. That’s a long story. But his death when it came was unexpected.

    Previous to my husband, I’ve lost my only brother to pancreatic cancer in just 6 months from diagnosis.

    Previous to my brother I lost a very old & dear friend who was like a Mother to me.

    Previous to them, I lost my precious oldest child, daughter Leanne @ 29 after a 3 yr battle aggressive breast cancer that metastasized rapidly.

    My father dropped dead of an aneurysm when I was 23.

    Since my husband has passed, my sons first wife,50 & mother of my only grandchild died of an overdose 1/2000. They were divorced, but we were friendly.

    My son has remarried & in 10/20 his new father in law was diag with lung cancer & passed 2/10/21.

    I have been seeing a wonderful therapist I saw after my daughter died. When Covid-19 restrctions started, I had weekly phone sessions with her. She has asked me if I wanted to decrease to 2X mo. I did. After the last holidays, she decreased visits to 1X a mo for what I call “tune ups.” Always telling me we could increase vss if needed or resume in person visits if I preferred.

    Quite frankly, I don’t know what I need at this point! I feels as though I’ve got the grieving thing down pretty good. Am 71 & have no idea about the rest of my life!!!

    Sorry to be so long winded, but it’s gotten hard to put life in a nutshell!

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  5. Doreen K Clapper  May 9, 2021 at 4:00 pm Reply

    I am so grateful that I came upon What’s your grief, I was searching for a song about grief and this came up. My heart goes out to every single one you beautiful people who have shared your stories. This article really gave me insight as to why I have been shutting myself away from the world out of fear.
    I am grieving my son, who has made the choice to remove me from his life and the pain is made more unbearable for me because a hundred times a day, I’m crying out,” WHY” ” HOW COULD THE LOVING LITTLE BOY I RAISED DO THIS? ” I have lost the very essence of who I am, his mom.
    I have lost all trust and faith that anybody will always love me, that if I do anything wrong, they will just go away.
    My son was the most affectionate, loving boy, when he was three and I was sick in the bathroom he brought me blankets and pillows dragging behind him to comfort me, he would get on his little bike and ride around the neighborhood buying me presents at garage sales he would say “Because I love you Mom” Everything he did was special like that, he showed such care and empathy to everyone.
    I believed we had a close and loving relationship. Six years ago I went through a lot of personal trauma and social drinking quickly turned to alcoholism, at that time Michael was in his twenty’s and was very busy being and doing all the fun and great things he should have been doing, he was rarely if ever around my drinking in the way that I thought could impact him, in fact I’m not sure there were many people who were aware of it most of the four years that I was sick, but the last year he met and fell in love,and was getting married, I adored and love his wife, when I met her I told her I couldn’t even have dreamt up a daughter-in-law that I could have loved more, I put myself in treatment, to make sure I was sober for his wedding, everything went great, but I couldn’t stay sober for long, it was on and off for another year, then I got the news, that I had dreamt about since I was a teenager, I was going to be a Grandma, even with the gift of a grandchild coming, I couldn’t fight the alcohol, I was still on again off again. It needs to be said that I am a highly sensitive woman and everything I see,and hear I feel deeply in my soul, before my granddaughter was born, My son and I were on the phone and I had been drinking, I was never a nasty, beligerent,drunk and he started saying things to me that were so hurtful, disrespectful and so out of character for him, I started to cry and then I got the whole” Stop being Sensitive” comeback from him for him just blowing my mind, and that was the only time I ever said a negative word to my 30 yr old son, I was mildly drunk, but drunk and I expressed the thought that the words he was saying we’re totally out of character for him and his lack of empathy sounded like words from someone else ( possibly his wife ) well that is when I learned he had no forgiveness in his heart for me, his daughter was born three years ago this march, I held and saw her once when she was a week old, I have not seen them since. I have been sober for going on three years and have worked, studied, immersed myself into understanding how alcoholism overtook my life. I was a loving and good woman before and now I’m even stronger, I am grateful for my disease, because it made me so much wiser and even more understanding, but I can’t get over or understand the pain of loosing him, I was my mother’s PCA for three years before I lost her last year, Michael wouldn’t even come to the funeral for the grandmother who had been so inlove with him, she spoiled him rotten, she was really the best friend I ever had. I lost them both, my son’s is intentional, most of the time I feel as though I can’t breath and most of the time I wish it was my last breath, was the first 28 yrs of his life and his love for me a lie? Or was I dreaming that it was something it wasn’t? I scared to find out, I’m scared to make decisions, I have nightmares, and have uncontrollable anxiety.
    Today is mother’s day and I just wish he was a little boy and would walk in my room with that face full of pride for the card he made for me.
    My love to all of you Dorie💖

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    • Jane  August 1, 2021 at 10:25 am Reply

      Dear, Dear, Doreen,
      I am so sorry for your losses. I too lost a child, my daughter, to her unwillingness to have a relationship. She told others she met I was abusive and yet, at one point, because of housing issues, she wanted to stay with me again. That’s when she made sure I would read a text of very hurtful words about me. I had thought we were mending a broken relationship. Shame on me! Perhaps your alcoholic ways were not as secret as you think and an honest conversation about it could go a long way to mending fences? But, it’s not a sure thing. Sometimes adult children don’t make the choices we would have them make. And they distance themselves because that is what they need, for what ever reason. Please extend peace and friendship to him and his family as much as possible, after the honest conversation and find supportive people, a church or us here. I am so with you! It’s only the ones we love so very much that can hurt us so deeply. If we love them and if they NEED to separate from us then, we wish them the best…with love. And grieve.

  6. stuart holsapple  May 9, 2021 at 10:02 am Reply

    i am losing my parents naturaly with age, i am missing my right eye i have money in checking no savings account. i have limited education. i have an ira and on social security. i am working retail which is going no wher and it puts mr in depression. i don’t look foreward to the future i feel i have none

  7. Bella  April 13, 2021 at 7:23 am Reply

    i came across this blog after talking to my boyfriend about why he’s been not very affectionate and distant as of late and he said it’s because i’ve been so sensitive and unstable in my mood for about a month. i hadn’t even noticed. i’m 19 and i watched my lovely grandma pass in front of me about a month ago and i didn’t even realise how hard it affected me until very recently and i’ve had to come to accept that i’m still hurting and very afraid of everyone around me leaving or dying too (this is the first big loss i’ve ever dealt with) this community is so lovely and reading these posts and comments has made me feel so comforted and i’m so grateful for finding it and being able to just spill my guts to strangers on the internet. thank you.

    3
  8. JP  March 26, 2021 at 1:14 am Reply

    My husband was happy and healthy. He went to work and died and never came home. So, I have a fear that I won’t have a tomorrow. It makes it hard to make long term plans and to have goals. Maybe…maybe, I will try to just let myself adjust to my new reality and breathe. Maybe, I can go without goals or long term plans for a bit?

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  9. Merleen  March 22, 2021 at 9:32 am Reply

    Kathleen K., I was so moved by your message. I told lost my son in November at age 41. I am a Clinical Social worker. I have had other losses, but none like this….I am trying to stay with the pain, honor it, and walk through it….our lives are forever changed. Remember to keep breathing. Sometimes it’s all we can do. So very sorry for your losses. ❤️

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  10. Lizzie Gregory  March 19, 2021 at 2:10 pm Reply

    Wow, this is exactly what I have felt my whole life. My dad died in an accident when I was three and my nan who stepped in his place, died suddenly when I was 14. Every relationship I have ever had has underlying dread. If there was a chance it wouldn’t work out then I was gone. If they treated me like I was worthless then I wanted to stay (it wouldn’t hurt when they finally left). ‘The One’ where I knew the stakes were high and it would work out if I was brave; I him hurt over and over again. Any type of loss in my life no matter what (friends moving, friends having babies who grow naturally distant, animals dying), it feels crushing to me. I can’t wait for people to go already so I can just breathe and stop having to wait for that inevitable moment. I also desperately love and care for the people in my life that no one ever knows the internal struggle I feel. I am so grateful for my husband who saw my fragile inner child trying to cope and is showing me a healthier way to view the world. Thank you so much for sharing what I always felt but could not put into words. Love and healing to you all, L

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  11. tammy  March 14, 2021 at 3:47 pm Reply

    what would be your advice to this my mom passed feb 4th of this year 2021. i seen how bad me and my siblings clashed. my father has been given 6months to live and my sister who cares for him totally for control does not want to discuss any thing as far as financially and pensions she ferls she dont need to explain ir discuss anything for after my father passes for she has poa. i know that when he passes poa means nothing but i feel that she us being sneaky and studf because she plans to share or give nothing tk his other children whar or how shoukd i handle this i get no where with her

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  12. Christine Cosner  March 9, 2021 at 8:41 am Reply

    Omg! I have often wondered what my problem was – always niggling at the edge of my thoughts – bad things can happen. I lost my son – I can lose my other son. I can get cancer – my husband can get sick…I can’t EVER enjoy well-being in any give day because those thought hover. It robs me of my enjoyment of a sunshiny day – literally every sunshiny day. What to do? Thanks for this incredibly eye opening article. It explains what’s happening to me.

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    • Julie  March 12, 2021 at 3:12 pm Reply

      God Speed

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  13. Barb  March 9, 2021 at 2:30 am Reply

    This was a great article for me. I have a better understanding the “why” of my anxiety. Loss of a love one and the uncertainty of life without them creates a high level of fear inside me.

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  14. Kathleen Kulesza  March 8, 2021 at 9:54 pm Reply

    I have so many deaths in my life, my parents, of course. My sister at 27, my daughter 2014 . By suicide at 42. A great person, that gave back to society.
    A Social Worker, Victims Adovocate. Saved lives, but could not save her own.
    Now my nephew, died November 23, 2020.
    My mother lost her youngest child, I did, and my sister did.
    Our grief,is beyond, anything we can cope with, at this moment. Grief does not even describe our families lost.
    There are no words heal are pain
    Life, became what it is, what it left behind is undescriblable pain

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    • Michelle  March 11, 2021 at 11:03 am Reply

      I am sorry for your losses. When I miss the peoe that I have lost. My friend tod me that I should remember that there is no time in heaven. And that physics only works on this realm. So, our loved ones will see us soon, and we are just waiting here for a while. We might as well make good time of our time on earth, and make our loved proud of us. We make them happy by trying to be happy ourselves. This Dvice helped me a little bit. So zi wanted to pass it on to you. God bless you.

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    • Julie  March 12, 2021 at 3:14 pm Reply

      I’m so sorry as I see it we only have two choices want to stay in the spirit of sadness and grievance and emptiness and almost an answered anger or we can get together and create new memories and force ourselves to have some fun go on trips and get to know one another so that we can all be there for one another because we’ve all lost so many that’s the only way I see a note to this I do know that it’s possible I’ve had good moments but without people to share them with it’s nothing absolutely nothing. Much love to everyone.

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      • Miranda  March 21, 2021 at 10:02 am

        I lost my mama February 24 25 days ago my life ain’t the same I miss her so much I hate to go into a store I feel like I’m busy out crying it’s to much for me I lost my mama to cancer I took care of her I just feel like my life is over even tho I know it not i just feel that way i feel so mad all the time i wanna reconnect with her so bad this hurts way to bad i dont know if i will ever what ya say be normal again

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    • Julie  March 12, 2021 at 3:19 pm Reply

      Kathleen

      Let’s all contact one another, please in someway maybe we can put the pieces back together that are left here.

      2
      • Julie  March 12, 2021 at 3:20 pm

        I’m sorry, that did not let me finish. And much warm goes out to you.

        3
      • JP  April 4, 2021 at 8:22 pm

        I would like to connect with others if possible. What is the best way to do that?

        2
  15. Mrs Vanessa J Rolph  March 8, 2021 at 3:50 pm Reply

    I understand living with fear, and the vice-like grip it has on your emotions. How impossible it is to accept a monumental loss in your life and how it affects your faith in the world. When your previous, just taken for granted, “good luck” runs out after losing the special person who made you complete, I experienced a major physical and mental malfunction. I was an attractive, creative, happy-go-lucky young woman, full of life and laughter. Meeting my husband was a million-to-one chance, it was like everything just came together, and our lives were perfect in every way after we married. Thirty-one years later, on his 65th birthday, he was diagnosed with cancer; he was so positive, so upbeat, no matter what the odds were. But not me, oh no. I was so scared of him dying, all I could do was cry and pray. No-one else, be it family or friends suffered the acute anxiety I did. I found it hard to behave normally, to talk, to walk with legs like jelly, to eat or sleep. Your survival skills kick in, and you do manage to keep going. I became strong and focused on his well-being. The worst part was telling other people, which we did gradually. My voice sounded strange, the words not making sense, trying to downplay the reality. My husband was a true star, so courageous, remaining positive until he could no longer speak. He did not want to die or leave us. Life without him has made me question so many things. I feel I will never be able to live a life without fear of the future ever again. Nothing works properly now, clocks stop and other things go wrong without his steady presence. The magic of life becomes fear of the future, and not having any control.

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  16. Kathy  March 8, 2021 at 2:13 pm Reply

    I lost my husband of 46 years 8 months ago after a very long chronic long term illness and hospitalizations. I held his hand and talked to him until he took his last breath. I’ve never seen anyone die before. I was alone and had to be strong. Life happens. I know that and we knew it was a matter of time. We had a service and I got through that. I made it through an anniversary and the holidays. I dealt with the finances and passwords and paperwork with various businesses and agencies. I came through some pretty gnarly, confusing and twisted hoops. I feel so incredibly uneasy. Of course I know things will go wrong and they do. But waking up to find out that my pond is full of bubbles, the rug I ordered is missing, the engine light is on in my car and now my new floor lamp isn’t working just gives me so much anxiety! This is the small stuff too. Even when all those fixable things aren’t happening I’m still anxious. I try to stop and breathe, to take walks, call a friend or brew a cup of tea. I’m a positive person. I do go to counseling. I am fortunate that I have a close living family and good friends and that I don’t have to worry about money right now. I miss him terribly. He was my best friend. I’m not mad about it. Just anxious and sometimes overwhelmed. What else can I do to get this under control?

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  17. Kathy  March 8, 2021 at 1:48 pm Reply

    Thank you so much for this article. I hear that little voice, too, after 3 major traumas in my adult life. This article describes the effect of uncertainty so well. Many thanks for your important work!

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  18. Charlotte Orth  March 8, 2021 at 1:33 pm Reply

    My son, who is 51, has mild OCD but I see this trait in him. He is so afraid that he will not be up to dealing with death, illness etc. He has begun to avoid funerals, hospitals, nursing homes and other places of illness and death.

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