The type of grief that comes with chronic illness is complex.
Grief is an experience that can completely consume you mentally, physically, and emotionally — and it doesn’t just happen with the traditional sense of loss.
In fact, going through the stages of grief can happen as a result of any major life change.
For many disabled and chronically ill people, grieving your health after a new medical diagnosis can be an unexpected challenge. The type of grief that comes with chronic illness is complex, and the cycle can often restart each time a new issue presents itself.
Here, we look at the standard five stages of grief according to Swiss-American psychiatrist Elizabeth Kubler-Ross, but through our relationships to our own bodies and what it means to mourn ourselves.
People who experience grief might be familiar with this first and well-known stage.
Denial, simply put, is the act of rejecting reality. Denial often comes first in the stages of grief because when a major life change occurs, the mind and body have to work to process the situation.
When you’re going through a medical complication, there are often signals that flash throughout your body to say, “Something isn’t right.” These could be flare-ups, worsening chronic pain, new symptoms, or a variety of other daily disruptions that you observe.
Even though you know logically that you’re entering a new relationship with your health when a new medical issue comes up or you get a new diagnosis, it’s common to need time to work through denial before beginning to process exactly what it is you’re feeling.
In the beginning of the grief cycle, you might deny the whole truth or just parts of reality.
Telling yourself that this isn’t really happening, that it’s “all in your head” or “not that bad,” is a way for your mind and body to protect itself from the emotional strain of grief.
You might also downplay the severity of the situation as a way to cope by:
- rejecting pain
- ignoring symptoms
- hiding symptoms from loved ones
- pushing through the health issues as though everything is okay
- doubting yourself and the validity of your concerns
For those who don’t have chronic conditions, it might be hard to understand why denial is a common first step in processing medical trauma. Don’t we want to know what’s wrong? Don’t we want to fix it?
The answer to these questions is yes: We want to have an explanation for the symptoms and, in a dream world, a solution. But it’s not that simple.
A vast majority of chronic conditions are long-lasting and only offer symptomatic treatments rather than a cure or solution. Essentially, when you receive a new diagnosis (or if you’re still waiting on one with ongoing symptoms), the reality of time kicks in. The timeline changes.
Suddenly, you aren’t looking for a name to explain your pain, your symptoms, or your sleepless nights. Once you know what the underlying problem is, you know that the next step is to move on to treatment.
Yet, this next step can often feel impossible. And in the case of chronic illnesses, you know that this issue doesn’t necessarily have an end date.
So, to cope with this new reality — even if you’ve been waiting for a diagnosis or an explanation or someone simply to tell you that they believe you — you might enter the denial stage to try to convince yourself that it isn’t that bad. That it isn’t real.
If you’re currently in denial about your health, know that this is okay. If you’re able, allow yourself time to process the facts of the situation.
You might choose to write down a list of the facts (i.e., “I felt pain today,” “The doctor told me I had a tumor,” “I am waiting on blood work results”) until they start to feel real.
You might also decide to schedule a set time during the day to distract yourself from reality by reading a book or marathoning a show. Taking breaks is a great way to give yourself the space you need to process all the new changes in your life until they don’t feel so overwhelming.
Another strong emotion that you might experience is anger — at yourself, at doctors, at the world.
When anger is burning through you, it means you have most likely come to understand the reality of your situation. But this doesn’t necessarily mean that you’re ready to accept it.
Sometimes, it feels easier or more manageable to lash out at others when you’re grieving for yourself.
That doctor who didn’t listen to you sooner? The receptionist who scheduled your appointment right after a full day of work? The parking lot with no accessible spots? Their fault.
But you also might turn inward on yourself, especially if you experienced denial previously.
You might ask yourself why you waited so long to report symptom changes or why you didn’t get your medicine refilled. This can bring on a lot of self-hatred and seriously harm both your physical and mental health.
During these moments of anger, take a moment to recognize what you’re feeling, first and foremost. There’s a reason why anger is a key step in grieving — it allows you to start feeling again, as well as to examine your own feelings toward the situation.
When you feel that you’re ready to start letting go of the anger, there are different coping strategies that can help you process these strong emotions, such as art therapy, venting to friends, and practicing mindfulness.
But remember: When feelings of anger come back up as you go through the grief cycle, recognize the sensations and reflect on how they’re manifesting. Is your jaw clenched? Has your tone changed? Taking stock of your emotions can help you to reconnect with your body, especially when your body is the source of frustration.
Grief and depression often go hand-in-hand.
In chronically ill people, depression and other mental health conditions can also often muddle or confuse symptoms. Depression can make chronic pain worse with head, body, and stomach aches.
How do you know when your symptoms are from depression or from a different medical issue?
First, let’s note that no matter where your symptoms stem from — whether it’s physical, emotional, mental, or behavioral health — they’re valid.
Too many chronically ill people have been labeled as “attention seekers.” This disbelief in our symptoms and our bodies only makes the grieving process harder.
Know that whatever you’re going through, there’s a community of people out there who understand what you’re feeling.
That being said, it can be hard to advocate for your needs when you’re in this stage of grief. You might feel that it’s pointless to keep searching for a diagnosis or treatment. You might find yourself wishing that all of these problems would just go away.
Depression is something that often requires additional services, such as counseling. For crisis intervention, please seek out these resources on how to keep yourself safe during this vulnerable process.https://tpc.googlesyndication.com/safeframe/1-0-37/html/container.html
4. Bargaining or negotiating
With this stage comes the “what ifs.”
What if the doctor is wrong? What if I had done something differently (diet, exercise, medicine, therapy, surgery, etc.)? What if I got into the specialist sooner?
Though this isn’t the same as denial, in which you’re trying to shut out reality, this stage might feel similar because you’re thinking of all the ways that the situation could have gone differently.
Even though you can’t actually change the past (or predict the future), negotiating with your health can be a way to process this new reality.
In fact, even after we “complete” this stage of grief, many chronically ill people still work to negotiate with their abilities as they learn their new limits. In this sense, the bargaining stage of grief is one that often reoccurs as our health continues to evolve.
The last stage of grief is typically acceptance.
Acceptance of reality. Acceptance of the pain. Acceptance of how different your relationship to your body might be now.
Research suggests that coming to terms with chronic pain can actually reduce the severity of your physical and emotional pain.
By accepting it, you acknowledge that it’s there without judgement. Then, you’re able to move forward in using coping strategies and different treatments to address the pain.
It’s important to note, though, that acceptance doesn’t mean that you have to be happy or pleased with everything that’s happening to your body and health. Acceptance does not have to mean contentedness.
You might still feel angry and depressed and overwhelmed at your situation — but this is okay.
Our relationship to our bodies is intimate, complex, and always changing shapes.
Though a new medical diagnosis or concern can restart the grief cycle, this final stage of acceptance is one that we’re always working toward.
The truth is that we don’t have much control over our bodies, which is terrifying. We can’t wish away pain or illness like blowing on dandelion puffs — no matter how hard we try or how many stems we pluck.
But we can learn to trust the cycle of grief and know that these feelings of loss are temporary. Most of all, we can practice a little self-forgiveness and self-kindness.
We can allow ourselves to be messy and mad and human.
These feelings and experiences might leave us feeling vulnerable, but through this, we find strength. In the end, we always find a way to survive.
Aryanna Falkner is a disabled writer from Buffalo, New York. She’s an MFA candidate in fiction at Bowling Green State University in Ohio, where she lives with her fiancé and their fluffy black cat. Her writing has appeared or is forthcoming in Blanket Sea and Tule Review. Find her and pictures of her cat on Twitter.