Chronic Pain/Illness and Grief
When we think about grief, most of us picture losing a person. But there is another kind of loss that gets talked about far less, and it is one that a lot of people are living with quietly every day. It is the loss of the healthy body.
If you live with a chronic pain or illness, you know what I mean. The pain or illness changes your relationships. It changes what your career can look like. It changes the hobbies you can do, the plans you can make, and sometimes even how you see yourself. The life you thought you were going to live is not the life in front of you anymore.
And here is the thing I really want you to hear today: grieving that is normal. Grief is simply the way we respond to loss, and the loss of your health is a real loss. You are allowed to grieve it.
So, in this vlog I want to walk you through a way of understanding that grief that I have found genuinely helpful. It is called the Dual Process Model of Grief, developed by researchers Margaret Stroebe and Henk Schut back in 1999. What I love about their model is that it does not pretend grief is tidy. It makes room for how complicated, non-linear, and honestly messy the whole thing really is.
Let me tell you how it works:
Two kinds of stressors
The dual process model says that when we grieve, we are actually dealing with two different kinds of stress at the same time. The researchers call them loss-oriented stressors and restoration-oriented stressors. Both of them need our attention. Let me break down each one.
Loss-oriented stressors are the ones focused on the loss itself. With chronic pain or illness, your changed body leaves you with symptoms. It is taking in and processing what it means to have different energy levels, a different physical appearance, a body that works differently than it used to. It is sitting with the fact that the life you might have led as a healthy person is gone, and in its place is a different life, one shaped by the absence of that optimal health.
Dealing with these stressors means feeling the hard stuff. The deep sorrow. The yearning for things to go back to how they were. That feeling that you are being asked to carry something unbearable. The anger at how unfair it all is. Coping here is not about fixing anything. It is about facing it, living with and through those emotions instead of running from them.
Restoration-oriented stressors are different. These are the secondary stresses that flow out of the primary loss of health. This is the practical rebuilding. How is the illness going to affect my ability to work? To play? To be there for the people I care about? How does my daily life have to change to accommodate this?
Coping with these stressors is about putting together a new life after the loss. Pain and Illness derails so many things, your career plans, your role in your relationships, even the ordinary activities of daily living. So, this side of grief is about making new plans for a new life.
Why you need both
Here is what really matters: you have to attend to both.
If you only focus on the loss, on the sorrow and the anger and the yearning, you can get stuck in the past. You stay in the grief and cannot move.
But if you only focus on the restoration, on rebuilding and problem-solving and pushing forward, you end up cutting off the past. You build a new life without ever really letting yourself feel what you lost, and it never gets integrated into who you are now.
For what the researchers call good grief to happen, you need both. The feeling and the rebuilding. The sorrow and the plans.
Oscillation
Now, this is the part of the model I think is the most freeing, and it is a word worth remembering: oscillation.
You do not deal with these two kinds of stress in a neat order. You swing back and forth between them, sometimes moment to moment.
Picture this. Someone is standing in front of the mirror, and she notices a change in her appearance from her illness, and she tears up. That is the loss side. And then, a moment later, she is already brainstorming, maybe there are clothes that would flatter her new body. That is the restoration side. Both happened within a minute of each other, and that is completely healthy.
But there is a second kind of oscillation, and I want to make sure this one really lands, because I think a lot of us need permission for it.
You also oscillate between actively grieving and taking a break from grief. Stroebe and Schut are really direct about this. They say, and I am quoting them here, that "it is arduous and exhausting to grieve; respite at times is recuperative." In other words, grieving is genuinely hard work, and rest from it is not you failing or avoiding. It is part of healing.
So, when the burden gets too heavy, you are allowed to put it down. Giving yourself permission to step back from active grieving is not a weakness in your grief. It is a necessary part of doing it well.
Why this model helps
So why do I find this model helpful? Because it does not treat grief like a checklist of stations you have to stop at before you finally arrive somewhere. It treats grief as an ongoing journey. It normalizes the fact that grief moves and shifts and flows.
Some days the loss is front and center. Some days rebuilding is front and center. And some days it is rest and respite that you need most. The model makes room for all of it.
It means you can hold several true things at once. You can say, "I am forever changed by this, and I am sad about living with chronic illness." You can also say, "I am building a new life for myself that makes room for this illness." And you can also say, "There are whole parts of who I am that have nothing to do with being ill at all." All three can be true on the same day. The model makes room for how rich and layered the real experience of grieving actually is.
A check-in exercise
I want to leave you with something you can actually do. Think of it as a check-in on your own grieving process. You might want to journal on these, or just sit with them after the video.
First, how am I dealing with the loss side, the sorrow over what the illness has taken? What feelings come up? What tends to trigger them? And what do I do when I feel them, do I lean in, do I distract, do I get overwhelmed?
Second, how am I dealing with the restoration side, the rebuilding? Same questions. What comes up, what triggers it, and what do I do with it?
Third, and this one takes some honesty: do I spend more time on one side than the other? Am I avoiding one of them? Am I so caught up in the loss that I have not been able to rebuild? Or am I so busy rebuilding that I have never actually let myself feel the sadness?
And finally, do I let myself take breaks from grief at all? What do those breaks look like? And do they actually feel restorative?
If you sit with those questions and your grieving process feels out of balance, please think about talking to a therapist. There is no prize for doing this alone.
Because that is really the heart of it. Good grief, feeling the loss, rebuilding the life, and resting when you need to, is an important part of living with chronic illness. You are allowed to grieve the body you lost. And you are allowed to build something new at the same time.
See you next time 😊