Recurring Grief with Chronic Illness


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