Thursday, April 25, 2013

The Stages of Grieving Chronic Illness

Good grief.

For real.

Without grieving there is no moving forward; no coming out of the tailspin of a devastating diagnosis.

No one does it better than Elisabeth Kubler Ross, whose life work revolved around grief and its five stages. "On Death and Dying" remains a classic. While a lot of her work focuses on actual physical death and the loss of a loved one, the Chronically Living cycle through this as well.

The stages of grief are "simple" enough to last a lifetime.

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

If only it were as easy as a five point checklist and one were able to cross off each step when finished, and move on to the next in an orderly fashion. Yeah. No. It doesn't work that way. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We may feel one, then another, and back again to the first one. All within a nanosecond.

1. Denial -

"This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle."

We've all been there in one way or another. After the death of a parent/grandparent/sibling/spouse. Upon finding out one's marriage is not salvageable. The loss of a job/income/home.

Personally, I have said the following things either out loud or in my head when I've received bad news. I mean bad news. Life changing news.

* NO!
* This can't be happening.
* That's unacceptable.
* I refuse to believe that.
* Are you SURE?


2. Anger

"Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, and yourself, but also to God. You may ask, “Where is God in this?

Underneath anger is pain, your pain."

Truth: anger scares me. While others' anger leaves me shaking, my own anger can feel like it will consume me. Sometimes denial is a whooole lot easier. But not a good place to stay. Two local psychologists have been very helpful to me in this area as well as some dear friends. I'm not going to kid you, nor bore you with the details, but my life has not been easy. I've had a lot to grieve as an adult making myself at home in the world (thank you, Joyce Maynard!) I can get stuck in anger; cataloging all sorts of perceived injustices. Is it helpful to me? Yes, and no. Yes, in the sense that I know what I'm working with. No, in the sense that looking at the list makes me ANGRY. Or, in reality, I feel pain. Deep, long lasting pain. Bereft. So thanks, Dr. G. and Dr. H ... you've brought me further than I had ever imagined possible, but ultimately this is a path I walk alone. I'm thankful that G-d has given me the strength to acknowledge my losses. And, yeah, scars heal over but they're still visible. For years after a C-section every time I leaned up against my kitchen sink I'd hit that "sweet spot" ... the one no doctor ever tells you will stay w/you. In the beginning I'd HURT when I hit it accidentally, but as time went on and my son grew older I'd twinge and think of how much I love him and how thankful I am he exists. It doesn't hurt me at all anymore and hasn't for decades, but there are times when showering I look down at it, smile, and say "hey, sweet pea!!!" Not that I'm imagining ever thinking lovingly of chronic illness, but there are lessons to be learned in the trenches. Lessons "healthy people" may not necessarily have the opportunity to receive. Don't I feel special. Yeah, sometimes I actually do.


"After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only …” or “What if …” statements. We want life returned to what is was; we want to go back in time, recognize the illness more quickly; if only, if only, if only. Guilt is often bargaining's companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of the loss or losses. We want to remain in the past, trying to negotiate our way out of the hurt."

Think Robin Williams to Matt Damon in "Good Will Hunting: "It's not your fault. It's not your fault. It's not your fault."

Only when I was able to realize that I didn't "deserve" to be bitten by an infected tick, and the fact that my body was run down was a reflection of my circumstances and not some cosmic or personal act of will, was I was able to stop w/the guilt and self blame. I don't bargain about my illness too much anymore, but I still find myself revisiting the concept from time to time. We all do.


"After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a monumental loss would be unusual. When a loss fully settles in your soul, the realization that your (fill in the blank) is gone and is not coming back is understandably, depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way."

Let there be no mistake, having to stare a chronic illness in the face is circumstantially depressing. NOT to be sad, anxious, and depressed is to be mentally ill. (This is where "What not to say to the Chronically Living" kicks in. Do not tell us to see one more doctor, try another antidepressant/anti-anxiety med or whatever. Unless you are a medical doctor with a degree in the area of our illness, please keep all your inexperienced and uneducated thoughts to yourself. Really. You're not helping us. You're HURTING us ... and then we have to grieve THAT. Not to be harsh ... just to be clear.)

Yes, that would be just a little bit of anger speaking.


"Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This stage is about accepting reality and recognizing that this new reality is the permanent/current reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others, or take them on ourselves.

Finding acceptance may be just having more good days than bad ones."

Even if they're just inside our heads.

There are times when I think I've accepted my chronic state and then times when I try and figure out ways to sue about 30 doctors. Huh. Anger. Pain. There are times I still think, "I bet I've learned enough now, huh G-d?" Bargaining.

This blog is a giant step toward my own acceptance of my situation. I may be down, but don't count me out.

Sleep well. Maybe tomorrow I'll talk about the emotions we encounter along the way .. sometimes all at once just like the stages of grief. A tidal wave.



  1. I feel so strongly that everyone who is healthy should read every word you write! Plus, of course, all of us who are NOT healthy benefit so much from your wisdom. Thank you for sharing everything you have learned the hard way.

    A couple of ideas:

    - There is a website called ROCKSCARLOVE. It's a little confusing because there is a manifesto to accept our scars (physical and emotional), plus very moving stories from people who have been scarred by all kinds of things, plus they sell clothing. To me the best part is the testimonials.

    - I hope you are familiar with Prochaska's Steps of Change. This is how we get OUT of the stages above. See for an overview.

    - Also, the concept of kaizen. Incremental improvement. Baby steps.

  2. Hi, just found your blog when i googled "grieving chronic illness." Grief sneaks up on me...I think maybe i live more in denial than i realize.

    I too am infected w/lyme - since early childhood or birth, not sure. Now i'm 30 - diagnosed 2 years ago, finally.

    i am going to trust that God will heal my layers of wounds from the years little by little, as I can handle it. maybe healing emotionally is like a herx - it's painful, but ultimately good. you know how they say lyme treatment is like a marathon? i guess emotional healing is the same.

    Thanks for letting me process that's a marathon, not a sprint. Thanks for your insight and openness on this blog. Peace and healing to you. ~luvmountains

  3. Hi Anon ...

    Yes, I've found that most healing is like peeling an onion ... I'm sorry to hear you have Lyme but am glad you finally have an answer to a life's worth of medical questioning.

    Hang in there ...