Stages of Grief and Chronic Disease, Chronic Pain
How many of you know of the Five Stages of Grief proposed by the renowned psychologist Elizabeth Kubler-Ross?
Proposed in her 1969 book “On Death and Dying,” she explores the various stages people go through after being diagnosed with a terminal illness or experiencing the death of a loved one.Stages that I have found to be the exact ones I am myself going through dealing with a chronic illness: Denial and isolation; Anger; Bargaining, Depression, Acceptance.
Examining the stages of grief and the cessation of mourning.
It is noted that people do not often follow the steps in order, yet they all seem to experience them in one way or another. As an avid psychology fan and after years of psychology classes, I know the work of Kubler-Ross well. It was a while into my chronic pain journey that it hit me in the face: the stages of death and dying are similar if not identical to the stages of mourning the person that existed before a chronic illness.
My first year at Florida State was awful. I was in a dorm filled with mold and a covered window about the size of (literally) a prison cell for fall semester. I was sick constantly and in chronic pain from my back. When I was diagnosed, I took a diagnosis of Rheumatoid Arthritis lightly. I realized not what the disease truly meant for me, partly because of it’s deceiving name, the lack of certainty surrounding the diagnosis (possibly lupus, possibly this, possibly that, “we’ll just have to wait and watch”) and partly because I was so used to facing health-related hurdles in my life. I took this as another hurdle I would eventually get over and move on from. I was wrong, and when I realized I was wrong, I had this idea that I would reach remission with one or two medications and be back to school by January without any problems. Call it denial, call it unintentional ignorance— personally I think it was a bit of both combined with wishful thinking. But here I am. It’s nearly January and I’m sicker than I was when I was first diagnosed, on medication three…four? And though I am going back to university, it is with anxiety knowing that my mind is the only part of my body that is ready. And even then, we all know the mind is compromised when the body is strained.
Isolation came quickly before a diagnosis. First was my relationship to fall apart. Though my illness was not entirely to blame, it took a toll on us. I wasn’t the same person anymore; pain changed me. Pain, being shunned by professionals and by my family who told me I was just “stressed,” and a particularly abusive situation that took my self esteem down to zero and my stress level up to ten. That fell apart. Soon after, my other friends fell away. Some from addiction to drugs, some from my own choosing to get rid of toxic relationships. I found myself feeling isolated; it was (and often still is) so difficult to relate to my peers. I worry about getting through each day, about making it through a year. Everything else comes second. My peers are worried about rent, tests, social events, weed. Those things don’t fly high on my radar compared to “your test results came back and your SED rate is up 10…” Chronic illness puts your priorities and goals into perspective.
My anger comes and goes frequently. By nature I am not an angry person. I think in part I am not overwhelmingly angry because I’ve had health hurdles since I was a small child. There was no time for anger, only productivity and positivity: do what you have to do to get better. There are nights where I sit and cry, furiously frustrated that nothing will kill the pain, that I can’t get comfortable, that I never sleep well and even when I do, I am never “rested.” That’s the nature of chronic disease— it keeps on giving and I will keep on fighting, and will keep on having fits of frustration. It’s natural, it’s normal. Perhaps healthy, even.
I never bargained. I knew there was no miracle cure and remission rates are relatively slim. I did, (and still do) though, talk to my grandmother. She passed a few years ago after over a decade of chronic illness and suffering. We had a deep connection, her and I. I talk to her frequently. I ask her to get me through rough nights, through surgeries, to send me signs when I need guidance. I beg her, but never for a cure or an end. That is up to medication, scientific breakthroughs, or miracles. No amount of bargaining in the world will cure me.
Like anger, I go through periods of depression. Prior to being diagnosed, I was miserable. Truly one of the lowest times of my life. I did not want to live in the pain I was in, with no one believing something was wrong, seven hours from home. I went days in bed without food because I couldn’t leave my dorm to get any. I lost the person I’d considered dearest to me the same day my liver and stomach had a horrible reaction to medication and put me in the hospital. I came home to a group of guy friends who really, thankfully, pulled me through that time. I still go through depressive states. Some days I cry. I really cry. I’m tearing now, thinking about it. A friend said to me a few months ago that perhaps the reason my friends and peers don’t understand that I’m as sick as I am is because I don’t show it, that maybe I should let down that guard. She’s right (Amanda, I love you :]).
Can you really ever accept a chronic illness? Sure there are days where I do, but consistently? I mourn for pieces of myself, but I have not given up hope that those pieces might come back at some time, if only for a while. I accept that I may have to create a new life— one that I never imagined. In many ways, I already have. A tumblr user (sorry please send me your username!) once wrote that a chronic illness is analogous to being right handed your entire life, then one day having to be left handed for the rest of your life. You have to adapt, and that I can and will do. But I cannot accept living in awful pain and suffering for the rest of my life. I cannot accept the fact that there is no cure and so I will fight to the very end for this cause, for the rest of you, for myself, for my dreams and career, my loved ones, for the caregivers, for the future doctors and great rheumatologists out there. I will not accept my chronic illness so long as I have the option to battle it’s punishments on my body.
These five stages are interchanging and mean different things to different people. We are constantly floating through each one of them, sometimes multiple, at different times. Some days, I am not my illness. It is a part of me that I accept to be part of my life. Other days, I cannot accept it, for it is so cruel. Only unlike a terminal illness where there is cessation of suffering and life, chronic illness is terminal in that there is no cessation and thatis the life sentence. And perhaps because there is no cessation of the disease, there is no cessation of these stages— we continue to go through cycles of them in various patterns through the years. Isn’t that an aspect of chronic illness to accept in itself?
Have you experienced the stages? Do your mourn for the person you were prior to your illness, or have you accepted the absence of that person? I mourn for pieces of myself, but I have not given up hope that those pieces might come back at some time, if only for a while.
"I want to change the world,
Instead I sleep
I want to believe in more
Than you and me
All that I know is I’m breathing
All I can do is keep breathing”
—Keep Breathing, Ingrid Michaelson
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- nursingmonkeymomma answered: well said! but weirdness cause i’m also slowly writing about mourning the life before chronic illness as i have time.
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- notjustanotherjesusblog answered: I also have gone through these stages; especially after I was first diagnosed. So true.
- sennethbrassenthwaite answered: I know for a fact I’ve gone through these stages, over and over again.
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- katisconfused answered: I think I am having most of them at once. Mostly fear of “what is going to happen to me” and that I will be stuck in this limbo forever.
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