Grief is something we’d typically associate with the death of a loved one, but it’s a set of emotions we can feel in response to any loss. Chronic illness is a loss. It’s a loss of a healthy body and all that comes with it, which is why its onset is followed by a deep grieving process. Why is it then that it feels so hard to talk about? There’s a plethora of information online about the medical side of illnesses like rheumatoid arthritis, from the medication that’s available to many different ways to manage symptoms, but the overwhelming consensus of many rheumatoid illness resources online seems to be that we don’t talk about grief.
What I’ve found to be a useful theory for framing and making sense of chronic illness-related grief is the DPM, which was developed by Stoebe and Schut in 1999. The idea is that a grieving person will be faced with two types of stressors – loss-oriented stressors with a focus on the loss itself, and restoration-oriented stressors with a focus on secondary sources of stress, all around the reconstruction of your life as you knew it to a new life shaped by illness. The grieving process will then be an oscillation between thoughts and feelings related to loss and restoration, punctuated by periods of rest from grieving. Grief is messy and nonlinear and has a way of revisiting you even after you thought you were “over it”, and what I like about the
DPM in particular is that it allows for all that messiness to exist while still providing the language to describe it.
When I think of my own loss of health, I think of how I now exist in a body which is very persistently in severe pain and exhausted, due to something that’s incurable. I look very different now, I’ve gained weight and I have stretch marks that were never there before, as well as red patches on my skin wherever my joints are inflamed. And I’d be lying if I said it all didn’t make me terribly sad sometimes. These are things that would fall under loss-oriented stressors in the DPM.
As we know, the impacts of illness go beyond the symptoms themselves. As grief researcher and psychology professor at the University of Memphis puts it, “a central process in grieving is the attempt to reaffirm or reconstruct a world of meaning that has been challenged by loss”. I used to be an avid boxer and runner, and I used to love to go out at night to dance. Ever since becoming chronically ill, these things cause me such severe physical pain that I am virtually immobile for days afterwards. I am uncertain of my future, I do not know if I will be able to have the career I envisioned for myself. Illness has a way of turning your life upside down; it almost feels like there’s a whole new me that needs to be constructed now that so many of the things that made me, well, me, are no longer possible. This is the idea of restoration-oriented grief; it isn’t grief over a body but over a whole life that that body allowed for.
I find that chronic illness is an inherently isolating experience. We connect with people over facets of our lives that are shared, and when such a significant part of our lives is suddenly no longer something that we have in common with our loved ones, there’s a big potential for this to make us feel disconnected and alone. On the flip side, it can be a powerful experience for your grief to be truly heard. I like the way grief expert David Kessler put it on Brené Brown’s podcast Unlocking Us:
“… what everyone has in common is that no matter how they grieve, they share a need for their grief to be witnessed. That doesn’t mean needing someone to try to lessen it or reframe it for them. The need is for someone to be fully present to the magnitude of their loss without trying to point out a silver lining.”
Circling back to the DPM, Stoebe and Schut also point out the importance of taking “respite” from grief-stressors. Grief is good and necessary but it isn’t meant to consume us. What I’ve personally found to be a particularly effective way of resting from grief is anything that involves joy. Not only do I find the physical experience of joy very energizing and mind clearing, but it also seems to play a part in the unfolding of my new life. What I mean is that I seek out activities that bring me joy, and the activities I’m drawn to are shaping the way my post-chronic-illness life looks. I’ve come to love baking and cooking, and I’ve started going out on walks more, just to sit outside somewhere and journal and sketch any flowers and ducks I might see, and my efforts of just taking a break from it all are starting to give me an idea of the kind of person I am becoming.
If there’s anything I’d like you to take away from this post, let it be one of these three things: 1) It’s important to allow yourself to sit with your feelings around your loss of health as well as the tumult it has caused in your life; 2) Give yourself permission to take time away from it all, perhaps doing something that brings you joy; 3) Allow your grief to be seen.
Stella is a Finnish writer, published poet, and student based in Switzerland. She has a passion for helping people connect with their feelings through her writing. Her favorite things to do include swimming in rivers, making pottery and journaling.
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