Recurring Grief with Chronic Illness

grief

Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on.  I don’t feel like I pity myself,  but this hit me hard.

I’ve never said “Why me?”, I’ve always thought, “Why not me?”.   However, I have had a lot of losses, and sometimes it gets to me.  There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control.  I’ve heard the same thing from other people who have chronic illnesses.

I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)

Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again.  Something may happen to spark it.  It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens….  Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time.  Our grief is discounted.  People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.

When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.

I recently started having seizures.  This means, at least for a while, I am losing even more of my independence.  My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me.  Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room!  This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.

There is really only a couple of things I long for all the time and those are things that cause me to feel guilt.  Guilt also has a lot to do about letting go of loss.  There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy.  We shouldn’t feel guilty, we are sick.  We can’t help that we can’t do things…but we still feel guilty.  Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families.  Personally, I feel a huge amount of guilt because I can’t cook.  Hubby does so much, he is spread so thin, and he hates to cook.  I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t.  It’s too dangerous.  It breaks my heart every time he has to cook dinner.  I know how much he dreads doing it, and how hard it is for him.  (but he really has become a pretty good cook)

Sometimes we are completely irrational for a while when we are grieving.  For example, I can get so angry with people, I feel so many people abandoned me.  I get so worked up about it and just want to scream.  If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated.  Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did.  It’s my expectations that cause the pain.  I don’t know the circumstances, and frankly at this point, it doesn’t matter.  But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell.  ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.

The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time.  It’s okay to grieve what you have lost, over and over again, it’s natural.  It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.

Remember, if you lost a loved one, you would always miss them.  People do not think this is unusual, they do not think this is something we should completely get over.   We lost huge parts of our lives, why are we expected to not miss it?

I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.

Greiving Chronic Illness and Injury – Infinite Losses
Experiences of loss and chronic sorrow in persons with severe chronic illness

Middle Range Theory of Chronic Sorrow

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28 thoughts on “Recurring Grief with Chronic Illness

    • I agree Daniel. I’m hoping this will help some understand that our loses are real. They aren’t something you just get over. I will always miss some things I’ve lost, just as I’ll always miss my mom. Thank you for understanding. And coming by.

    • Hi Zia Dot,
      Always wish you were closer, just so we could see you!
      We love and miss you.

      Stuart would never say he is stretched so thin, he says it is an honor to care for me. We do handle things pretty darn good. I just felt this needed to be said.

      xoxo

    • It’s not just me…there are so many of us.
      I’m sure you went through the same thing for a while. Is there anything you miss from before your disability?

      • Yes, I miss the exuberance and financial gain from being able to go to a full time job every day. And the benefits. When you are no longer able to do that, it is pretty darn devastating. Add the stress of pain and it just makes things so depressing. It’s a struggle to make things work, make ends meet and what I wouldn’t give to have my old life back.

  1. I immediately have difficulty when someone tells me that I have to feel a certain way. I think I’m like you in that I don’t sit around and say “Why me?” I mean, we are years and years past that. Sometimes we’re just going to be sad. I take someone else telling me that I have to stay positive 100% of the time as they just want to feel better about what I or we are going through. I no longer feel like it’s my responsibility.

    • I’m glad you’ve come to terms with it. I think I have too. I do wish more “normal” folks understood.
      I have talked to some people who feel the have to hide all their feelings, or they feel they should have been able to move on. I think it’s important for all of us to know, we it’s normal to be sad sometimes.

      • I’m always a little disturbed when I see updates from or about my cousin’s wife, who has had stage IV ovarian cancer for 4.5 years now. Everyone talks about how upbeat she is, but then I wonder if she has any sort of emotional outlet.

        • I hope she does have an outlet. It isn’t healthy to keep it in. My seizures, they think could be psycogenic. Holding things in, suppressing emotions, your brain finally says enough and fights back.
          (Hopefully it’s from a medication mess up, but this has taught me that I need to handle things better)
          Maybe you can reach out to your cousin, let her know she can let it all fall apart with you. You are a kind soul.

          • Wow, I hope the seizures are from the medication aspect too! I mean, seriously – it’s scary to think that your body would go to that extreme to say, “Wake up, booger, you can’t suppress anymore.”

  2. If you are fine with your life even half the time you must not feel like blogging then. ??
    I do think it is your expectations that often get in your way.
    I’d like to hear from you on good days, too. Love and hugs! 🙂

    • I have blogged many times on my good days. Perhaps it is time for a gratitude post. I’ve simply felt that a lot of serous things have needed discussion recently. And I’ve had a lot to process the last few months. I’ve talked a lot about it here.
      Or I haven’t posted at all…that often means I can’t blog, not the other way around. Not feeling sorry for myself, just the way it is. Depression probably has a bit to do with it too.
      I will try to post more of my good days. This post was not all about me. This was meant to help many people who feel this way, and didn’t feel they were normal, or understood.

  3. Hey There:

    Excellent post addressing a very important facet of chronic illness. It applies, in a sense, to mental health issues too. I grieve what my untreated mental illness has cost me. Grieved what I lost before; now I grieve because I know why I lost. If that makes any sense.
    I’ve had to admit that I’m no longer capable of taking total care of myself and I’m having a hard time dealing with that. Grieving what had always been my core — no matter what, I could take care of me. As you know, touch losing a chunk of your identity.

    • Mental illness is a chronic illness. I don’t think of those as being separate. I have realized that my identity wasn’t tied to that healthy person, what she could or couldn’t do. It’s me. Who I am inside. That part of me that loves, cares, gives, feels compassion…..
      I’ve lost a lot, I grieve for some, but I actually think I found my identity through this. I found the me that’s always there. You know her, she’s you friend.

      • Glad you feel grounded in yourself. That’s very important and a huge piece of acceptance. Not giving in, just accepting. And finding something that hasn’t changed or been lost. That’s important too.

  4. It’s amazing I was drafting a similar post earlier! I think coming terms your diagnosis doesn’t mean you have to be happy about it… I think you explained the situation beautifully, Thank you x

    • Fizztah,
      I’m glad you like it.
      When practicing mindfulness it says to accept things as they are, without wishing them to be different, well, I’m still working on some of that. But as I get there I know I will always miss some things. I don’t have to be sad all the time about it, but just like I really miss people I’ve lost, I accept it, but I miss them. And it’s normal. Mindfulness also says to be ente with ourselves, that I will do. I think we should all do more of that. Thanks for stopping by.

  5. Well Said Wendy! (hey! that sounds like a newspaper column!). You are so right. Loss is a continuous thread of life. Most of us, most of the time, pretend it’s not, so as not to grieve. When you have a chronic illness (with continuing and progressive losses as you’ve had) it’s impossible to pretend or ignore the loss. Grief is normal and natural. I often go through pity-parties that no one else is invited to.

    You are amazing to me as I can not even begin to fathom what you experience.
    sending love,
    judy

  6. Pingback: Stages of Grief following Diagnosis | ADD . . . and-so-much-more

  7. Another wonderful post, Wendy. Anyone who reads your blog knows how little you indulge in negative emotions and self-pity, and how bravely you cope with mounting losses — repeatedly!

    What IS it with the tough-love “pitty-party” comments? Truly, the older I get, the more I want to slap silly those who make them, then tell THEM to get over it and move on. Lucky for all of us that I only do it in print (currently – be warned, mean girls). Your article handles it better (and I linked it to a more carefully worded one in my grief series) BUT, of late, I have been particularly angry with various idiots who who can’t refrain from saying such things under the guise of “helpful” advice. My comment makes me feel much better than continuing to defend and explain the individual timing of perfectly normal and acceptable emotional responses. (I’m like a mama lion where my friends are concerned).

    I know it is impossible to feel what another is going through – but empathy and kindness are not only possible, they are appropriate and necessary.

    Much love and all respect,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    -ADD Coach Training Field founder/ADD Coaching co-founder-
    “It takes a village to transform a world!”

    • Thank you Madelyn,
      I try hard not to be hurt by such remarks, and understand that they don’t understand.
      That’s why I wrote this to hopefully help people understand and help us talk to those who don’t understand a little easier.
      Hopefully.
      I know I have been admitting that things have been getting to me more the past year or so.
      I’ve showed it more.
      Not just that, I’ve felt it more.
      But, it’s my life, and I’m the one who lives it every day, if you (not you, the person out there) want to help, telling me to stop the pity party sure ain’t the way to do it.
      That’s a good way to make me never tell you anything about me again.
      That’s why so many of us hold it in, keep the brave front, “fake it ’til you make it”…
      It’s not healthy.
      I find I’m becoming much more content with very few people in my life.
      Less chance for this crap.

      Carry on the good fight lady.
      xoxo w

      • Personally, I am not a fan of the “fake it” plan – that smacks of denial to me. I think the quickest way through grief – the only way, actually – is straight through. You have to get in touch with it is to go straight through it.

        I have been at the “explaining to enhance understanding” biz longer than you have, and my patience has worn thin over the years. I continue to work on it, but when I see cruelty aimed at people I care about, I lose my grip.

        AGAIN – sorry to hear that things have been difficult, emotionally.
        xx,
        mgh

  8. Pingback: The Interplay between Diagnosis and Grief | ADD . . . and-so-much-more

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