Lost in Grief

For the majority of people coping with chronic pain or illness it came on suddenly while we were innocently living normal lives.  Whether we were nine or fifty years old chronic pain brought about devastating changes in the life we knew.  These are no small changes, no small loses.  Marriages end, jobs are lost, homes are lost, confidence is lost, we are limited and altered in ways we never imagined.  Yet we do our best to limp along, many of us fighting like hell to find our way back to the life we once knew.  The truth that none of us want to admit is that that life is gone.  It’s true and it hurts, it’s a crushing conclusion and it’s an inevitable conclusion.  What we need to do before we go any further is allow ourselves to grieve for what we have lost.  That will take time and a lot of tears, but that is OK because it is a major loss.  In fact, it’s a series of major losses. A significant life loss is considered a separation from a significant person, place, item, or event.  Most people suffering chronic pain have experienced many of these losses at once, whereas just one is considered a major stressor requiring recovery and coping skills.  If that weren’t enough to convince you, serious illness itself is considered a major loss. What we need most is the one thing we are least likely to give ourselves; time and space to grieve.

The loss can be devastating.

The loss can be devastating.

Grief has five stages: denial, anger, bargaining, depression, and acceptance.  So if you are sitting there saying to yourself. “I’m fine, I don’t need to grieve.”  You are already beginning the grieving process without even knowing it.  I’m right there with you.  I have been fighting my chronic pain and illness for nearly eight years and it is only now that I’m ready to look at my life and grieve over the one I have lost.  I don’t want to accept that it is gone, but I know that the life I knew before is lost.  What I am going to experience in the future can be happy and triumphant in ways I don’t currently know, but I do need to take the time and grieve over the one I have lost.

I'm fine.  Perfectly fine. Just fine. I'm fine...really.

I’m fine. Perfectly fine. Just fine. I’m fine…really.

Grief is a very personal experience, while we all go through the five stages they may not go in order and the time spent in each step varies.  Everyone is different, there is no time limit, there is no wrong way to go about it, and whatever you feel at any point is perfectly valid.  No one can tell you how you should feel or when.  You may even move from one stage to another and back again.  There is no way to grieve wrong.  Take your time, give yourself the freedom to acknowledge your feelings.  Let the tears come and go as they please.  Seek your comfort in whatever makes you feel better from a hug to a day alone with a good book.  This whole process is yours and yours alone.  You will come to your own conclusions and you will find your own path.  Through it all, most importantly, be kind to yourself.  It is not something we are used to practicing.  We are caught up in keeping everyone else in mind, keeping up with work and whatever other obligations we may have.  It will be a challenge, but put yourself first for a while.  In some ways grieving due to chronic pain can be more painful than losing someone to death.  This is because with death you lose a loved one and then you go through the grieving process, whereas with chronic pain the losses are continuous, there is no point where it stops and healing can begin.  Your healing process is going to have challenges that no one can predict, so don’t be discouraged if you feel like you are moving one step forward and two back.  To help you on this journey lets take a closer look at the five stages of grief.

It's a long hard road.

It’s a long hard road.

Denial.  As humans in general we are professionals at denial.  We often practice it in multiple situations of our daily life.  Maybe our job makes us miserable, but we have bills to pay and responsibilities to maintain so we convince ourselves that it is not that bad.  We do the same with relationships, living situations, financial positions, and on and on.  This is a defense mechanism and most of us are very good at it.  Denial in grief is a temporary reaction that can help through the first wave of pain.  We all like to deny that the life we once knew is gone.  This is your life now.  Some things will never be the same.

D'Nile, it's not just a river in Egypt.

D’Nile, it’s not just a river in Egypt.

Anger.  Anger can be a cathartic stage.  It is really easy to be angry about chronic pain.  We scream to the heaven’s “Why me?”  “What did I do to deserve this?” “How could this happen?”  The feelings of betrayal can be overwhelming.  “How could my own body turn on me like this?” It is easy to be angry at the world, at our doctors, even our family and friends and especially the world.  It is frustrating that no one understands what chronic pain is like until they have lived it.  The medical system is suspicious of anyone claiming pain and treats you accordingly.  Trying to find a doctor that believes you and has any success in treating you is like winning the lottery.  The whole situation is nothing but obstacle after obstacle, while you are suffering.  How could you not be angry?

Go ahead. Let it out.

Go ahead. Let it out.

Bargaining.  Bargaining is the point where you start making deals with God or the universe to reverse your situation.  “If you make me better I will go join a convent, or feed the needy, or do cartwheels for the rest of my life.  Whatever you want, I’ll do it.  Just make me better!”  This is also where the “if” game begins.  If only I had gotten treated sooner.  If only I had known.  If only I had made a different decision. If only…etc.  This can go on indefinitely.  We are trying to regain control over what has already happened.  The reality is that even if we had made different decisions the outcome may be the same.  Our lives changing so drastically due to chronic pain is not our fault and not within our control.

Bargain all you want, the situation remains.

Bargain all you want, the situation remains.

Depression.  I’m so sad, why bother with anything?”  “I’m in so much pain, I can’t go on” “I can’t live this life.”  You lose interest in things that used to bring you joy.  It seems like the color of the world are duller.  You may isolate yourself, refuse visitors and spend a lot of time crying.  This is a mentally painful stage where you begin to let go of your old life. Chronic pain can be exceptionally lonely and this sensation settles in very deeply during this stage. You feel disconnected from everyone close to you. You feel the pain and the loss of your old life and begin moving into the final stage—acceptance.

Tears are good for you sometimes.

Tears are good for you sometimes.

Acceptance.  Acceptance doesn’t mean that suddenly everything is just fine.  What you find at the end of your grieving is just as personal as the process itself.  However, it is likely that you will still feel the pain of the life you once knew, it just means that you have learned to accept your new limitations and found new ways to find joy within them.  You may still feel angry, lonely, depressed, betrayed, and lost at some times, but you will have found coping mechanisms to find your way through the hard times and to capture the beautiful moments, however fleeting, that make life worth living.

Life is full of beautiful moments.  Just take the time to notice.

Life is full of beautiful moments. Just take the time to notice.


About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in caring, chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, coping, depression, fibromyalgia, health, invisible illness, Medicine, mystery diagnosis, Mystery Illness, pain management, rheumatoid arthitis, understanding and tagged , , , , , , , , , . Bookmark the permalink.

17 Responses to Lost in Grief

  1. Maureen Roberts says:

    Kristen, this piece is so good.

  2. Juli says:

    On June 12, the six-year anniversary passed of the surgery that ruined my great life. Then, just three-weeks later, a diagnosis my family and I had never heard of: Complex Regional Pain Disease. We all looked clueless — what the hell was CRPD? The doctor took no time to explain, just told us to go home and look it up online. What we found scared us to death. I was never going to get better; in fact, it’s a progressive disease that spreads and gets worse. Blessedly, I never had problems with doctor care and I think it’s because I’d already formed a six-year relationship with my doctor. One visit he’s telling me I look great, the next I can barely speak the pain is so severe. He KNEW something was seriously wrong. He knew I was not a drug seeker. Our relationship opened doors to pain clinics where others had them slammed in their faces.

    I work with a pain psychologist and a chronic pain psychiatrist to help me get through losing my old life — the one where I could walk, work, ride a bike, DANCE! I just want to dance again.

    I’m still stuck between anger and depression. Even after six-years I’m far from acceptance but that’s ok. I’m better than I was three-year go when I tried to kill myself to end the pain. That was a very black place. I don’t live there anymore.

    My CRPD focus is the bottom of my feet. All chronic pain suck, but the bottom of my feet? Argh!

    It’s 4:20am and the pain won’t let me sleep. Better wishes to you.

  3. Kate Fuller says:

    Great blog, My grief comes & goes even at the age of 63. This is a wonderful article by Toni Bernhard. http://www.psychologytoday.com/blog/turning-straw-gold/201406/13-tips-13-years-sick

  4. Lorraine Cassini says:

    Such an informative edition. I don’t think I’ve ever read about the mental battles we fight. I wound up going to therapy and I feel that helped me a lot.

  5. Jan Groh says:

    Reblogged this on Oh Twist! and commented:
    Fantastic post on grieving lost ability and coping with chronic pain.

  6. katymarie says:

    Reblogged this on KatyMarie and commented:
    I had to re-blog this because it hit home so hard, and I wanted to share. Very powerful!

  7. katymarie says:

    Thank you for writing this, I have been following your blog since I discovered it on a FB page. I am all mixed up in this cycle right now. Mostly I am just angry. I cried and cried after reading this, it hit home so hard. I know that one of the first steps I have to go through is forgiveness. I was hit by a lady that ran a stop sign in December of 2012 and since then my health has declined at a rate I can’t even believe. I was diagnosed with Neuropathy and then Fibromyalgia as a result. And it has been a battle from that night to this very moment. I have been hospitalized because I feel the burden I am on my family, Since I am just 33 the state and federal systems seem to believe that I can go back to my old job. I spend more than half of my time in bed due to pain (I am unable to take any of the meds approved for Fibromyalgia either because I can’t tolerate them or they have an interaction with my bipolar meds, as many of them contain antidepressants). I lost everything, my independence (I now have to live at home because even the simple things are hard for me), my income, my old self. Which yes I grieve so much. I am not the same person I used to be, and I know I never will be. Again thank you so much for this post. I did reblog it at http://katymarie25.wordpress.com/2014/06/21/lost-in-grief/. Your posts have really helped me, I cannot thank you enough. Much love to you ❤

  8. Tyro says:

    There are two very important things to understand about the five stages of grief: they don’t have a set order, and you can (and probably will) go through a given stage more than once during the process.

    Great post. I needed that.

  9. Tricia says:

    Great post, thank you. I’ve been suffering with chronic pain, and chronic illness since 2000. It’s been a very difficult path, and this post was very helpful.

  10. david lee says:

    Reading and crying . Sounds like stages of dying , shedding parts of your self along the way can feel like dying . Losing control of my attention , losing my ability to remain calm , losing being productive , losing friends I never imagined would abandon me , losing my ability to be a loving person , losing value , losing beauty , losing time , losing the safe habitation in ones “own” body , having no place to retreat to . Its impossible to want this future . I get it that whats left is what there is to work with but the letting go of who you were is hard work and does take time if it ever ends . I open my mouth and pain comes out . To get someone to hear my pain song that person has to be hired , thats a fact . Every good thing about me is historic . Even my sex has shriveled up , turned black , smelled bad then just fell off . Even simple gentle sustained motion causes pain twice what I could not already cope with , for days . Tell me what life is possible when motion is over . but not moving is no refuge . thanks for the knowing words

    • Juli says:

      You know me. I live your pain. I do pay someone to listen to my pain song. No one else wants to hear about pain that won’t end. I love your words.

  11. sherrillynn says:

    Reblogged this on The Invisible Chronic Illness Experience and commented:
    Long time no blog post again. I’m reblogging this

    • sherrillynn says:

      Sorry, I just noticed the link above is wrong. I don’t understand how to make my Google Plus sign in use the correct, Blogger address: https://theiciexperience.blogspot.com. You can read my comment on the reblog there. Technology has not been helpful in my journey through the stages of grief lately.

      • sherrillynn says:

        OK, here’s the whole title and link:

        “Is this what’s wrong with me? Am I lost in grief?” Reblogged from Then Everything Changed.



        l feel extremely grateful to have found this post and comment thread at this time in my life. People who understand! I’ve lived with ICI for a very long time now but I have had 3 new and serious diagnosis in the last three years and my grief cycle is much worse and lasting much longer than ever before. I feel like you are my new tribe; people who KNOW what it’s like to be Lost in Grief. Thank you.


  12. Reblogged this on Mom in Chronic Pain and commented:

    A wonderful piece on the grief associated with chronic pain.

  13. Marilyn Masonis says:

    Thank you so much for writing this story. As someone who has lived with chronic pain for 23 years, it’s as if I am reading my very own story. -Peace -Love & -Hope to ALL who suffer. XO

  14. Stacie Seeley says:

    Thank you. So many shun those of us who have days we cannot “suck it up and act happy.”
    Thank you for this article.

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