Most of us are familiar with the 5 stages of grief, however it wasn’t until I read this article 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 healing that can be done (emotionally and physically). Let’s look at the five steps of grieving.
- Denial and Isolation – This is often the step, where 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 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.
- 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.
- 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.
- Depression – We all end up here eventually. It’s just shy of acceptance, we’ve given in or we’ve quit. We’ve been overcome by the feeling that nothing we do will make a difference and we will never feel better, in fact we will likely only feel worse. There’s really no wonder that chronic pain and depression go hand in hand.
- 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 can go on, because we have so far.
One thought that jumped out at me as I read through the 5 stages is that we relive them 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 things will bring it on, 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 look forward to the potential losses of the future (not in a positive way, but as an expectation). We are in a constant state of expectant loss, and we are constantly grieving what we haven’t actually lost yet, and 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 would 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.
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