Living with chronic illness means grieving a life lost, a life we’d hoped to live, a life we’d planned to live. As we are faced with chronic illness, and throughout our time in it, we continue that grieving process, stepping through the 5 Stages of Grief.
Most of us are familiar with the 5 stages of grief, however it wasn’t until I read this article at Psych Central that it struck me how living with chronic illness we are constantly living these stages. It also struck me that doing so may be making us sicker.
Once we finally reach a point where we understand that chronic illness means the end of life as we know it, we begin to grieve that loss, just as we would any other. However, how much time we spend in each step and even what order we go through those steps may vary greatly based on how willing we are to work through the process.
The more we fight the process, the harder it becomes and the more damage we may cause ourselves, the more we may prolong our pain, and avoid the emotional and physical healing that needs to occur. Let’s look at the five steps of grieving.
Chronic Illness and The 5 Stages of Grief
1 . Denial and Isolation – This is often the step when we refuse to accept that our illness (or loss) is real. In doing so we often also isolate ourselves from the world, from people and information that can help us. This is where I often get stuck. No matter how many times I’ve reached a point of accepting my life as someone with chronic illness, I will still return to this step.I return to the denial, to wanting to pretend it isn’t really happening. I try to distance myself from my chronic illness and act like it’s not a major factor in my life. I pretend and in doing so I overdo it and inevitably my body will forcibly remind me that I am still sick.
I’m also guilty of isolation at times. When my chronic illnesses flare for longer periods I often pull back away from people and from life as a whole. In some ways it’s a protective measure to ensure that I don’t repeat the steps that brought me to the flare. Other times it’s more about trying to “protect” those around me from the negativity and pain I’m feeling.
2. Anger – Why Me!? Who is at fault? With chronic illness especially we most often direct our anger inward. We fear that we may have done something to deserve this life, that we may have in some way caused it, so the anger goes inward.Becoming angry with ourselves (or at all) only creates more stress, which increases our symptoms. We may also get angry with the medical institution or the doctor. It’s their fault because they don’t have better answers, or they didn’t do enough tests.
Always take as much time as you need to understand your illness. Ask questions of the doctor, write them down before you go, record his answers on your phone. Do, whatever you need to do to know that this is out of your (and his) control and there is no one to be angry at. It just is.
3 . Bargaining – Try as you might you can’t go back in time, but if you could you’d do anything to make this illness go away. You’d eat better, you’d exercise more. You wonder if this is a punishment for “sins” of your youth. You make “deals” with the almighty that if you could not be sick anymore you’d live differently. Again all this does is create more stress for our minds and our bodies, perpetuating the cycle.This doesn’t mean you shouldn’t make an effort to live as healthfully as possibly, despite being sick. Making healthy choices can help us feel better. But, no matter how much I promise to eat right forever and exercise every day, my chronic illness isn’t going to go away completely.
5 . Acceptance – Eventually, we reach a point where we come to terms with our new life. We accept that this is what is. We’ve learned to cope with the changes to our bodies, the increased pain, the fatigue, the various symptoms. We realize that we’ve made it this far and we can continue.Of course, reaching this point doesn’t mean we stay here forever. I’ve reached this point so many times and yet I’ve still often returned to the other stages. Things happen, our illnesses change, symptoms crop up, stress occurs, and we find ourselves back at the starting point once again.
We relive these stages regularly when living with a chronic illness like Fibromyalgia, Lupus, Lyme, or anything that “flares“. We are constantly in a state of anticipating our next flare, either because we know what will trigger the flares, or because we just know that there will be another one eventually. In doing so, we create more grief.
We are in a constant state of grieving, in some cases for things we haven’t even lost yet. We begin to expect future losses. We are in a constant state of expectant loss, and we are constantly grieving what we haven’t actually lost yet, as well as what we have. And, we may be making our situation worse by doing so.
In the first few years of my illness I allowed myself to avoid situations, people, and events that I wanted to enjoy because I was afraid of how I would feel afterward. I was grieving what I hadn’t even lost yet. I was living a state of constant expectations of negatives, and constant loss of what I hadn’t even had.
Eventually, I realized that I could either sit idly and watch the world pass by in hopes of avoiding a flare, OR I could LIVE and take the flares as they come. I’d rather live. I still grieve the life I lost, the inability to do all the things I’d like. But, at least I’m living. I still run through these stages from time to time, but I’m doing so in that moment, and that’s OK. I’d rather experience loss in a moment because I chose to live, than to forgo a life out of fear of living.
I still grieve the life I lost, the inability to do all the things I'd like. But, at least I'm living. Share on X
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Teemu says
This feels me. I’m afraid to live because I’m probably scared of everything… I’ve gone through anger, bargaining and depression. Now I’m just unmotivated and tired… really tired.
Tiki says
Wonderful words and great reminder that these stages don’t come with a little box to check off as “complete.” I think I have days when I hit each of these and probably borrow some items from other lists! I get stuck in the “one and done” mentality, forgetting that just because I have been here before doesn’t mean I’m not going to cycle through again as I move (hopefully) upward in understanding, experience, and acceptance. These are hard places to be in your head and heart. Once I stopped resisting with all my might and started to explore each with curiosity, the difficulty lessened and getting through to the other side quickened. It wasn’t easy. It didn’t happen in an afternoon and a nap. I wrote about it, I painted, I cooked angry (whole other lesson, ha!). My point being that you can find the best way for you to sort yourself out, but gift yourself time to do it thoroughly because you deserve good things!
Julie says
Resisting is so hard to let go of but we so need to.
Toni Dawn says
As I was reading this, I realized that I constantly go through these 5 stages, right before I got to the part where you talked about…constantly going through these 5 stages. This is absolutely right on. Then, I got a little bit of synchronicity on my twitter feed from other people like, “Don’t fear death but rather a life unlived. You don’t have to live forever, you just have to live,” and “What are you really enjoying in life lately?” I think the Universe is trying to tell me something today.
Julie says
I love it when that happens, when life, the universe, or whatever makes it so absolutely clear you need to hear a message.