Navigating parenthood with a spouse with chronic illness.
Grieving a Loved Ones Chronic Illness Diagnosis
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By Christina Mullins, MSW, LCSW
Grief
When we talk about “grief,” most of us immediately think about the death of someone we love. But grief isn’t just about death. It can be about lost dreams and the end of a relationship. It can hit us hard in other ways too, like when someone we care about gets diagnosed with a long-term illness.
Watching someone we love have a chronic illness brings up all sorts of emotions – sadness, frustration, and a feeling of helplessness. It can feel like a punch to the gut, leaving us feeling lost and confused. It’s a mix of feelings that can be really hard to deal with. It’s not just about their health; it’s also about all the plans and dreams we had together.
And dealing with chronic illness isn’t straightforward (hello remission and recurrence). It’s unpredictable and unending, hence the word chronic, which can make the grieving process feel like it’s dragging on forever. We often wonder if what we’re feeling is normal and if we’ll ever feel better.
Thankfully, there’s something called the seven stages of grief that can help us understand and cope with these intense feelings a little better. It reminds us that grieving a loss is a universal human experience and gives us a little bit of structure to hold onto when everything feels like it is spinning out of control.
In this blog post, we’ll briefly dive into the concepts of disenfranchised grief and ambiguous loss, exploring how they differ from more recognized forms of mourning. We’ll then take a closer look at the seven stages of grief, breaking down each stage and how it may show up in our lives when we’re dealing with loss or significant life changes. Following that, we’ll discuss various coping strategies to help navigate difficult emotions, from taking care of yourself to seeking support from loved ones. Finally, we’ll identify when it might be necessary to seek professional help in processing grief and finding healing.
Hopefully, you will be able to take something away that will help make this journey easier and a little less lonely.
Disenfranchised Grief and Ambiguous Loss
Disenfranchised grief occurs when the loss isn’t widely recognized by society, such as with chronic illness. Other examples include divorce, shattered dreams or the loss of a career. Unlike traditional grief, these losses often go unrecognized by others, leading to a lack of support and understanding. Coined by Kenneth Doka in 1980, disenfranchised grief is defined by a loss that isn’t openly acknowledged or socially validated. For instance, when my husband faced a chronic illness, the support offered didn’t match the depth of our struggle, leaving me feeling isolated and unsure if I had the right to grieve. I didn’t receive the outpouring of support that others receive when there is a death loss. My loss wasn’t as apparent and is easier to hide. Witnessing a loved one’s health decline, coupled with unfulfilled dreams, can be agonizing for spouses and loved ones, creating a sense of powerlessness and uncertainty about the future.
Ambiguous loss further complicates matters, as it involves a profound sense of loss without closure, such as when a loved one’s physical or emotional presence is altered due to illness. Yes, my husband is still alive but they are not the same person they were before and never will they be that person again (ouch, just typing that still hurts). This type of loss can be emotionally draining and isolating as you deal with the fact that there may not be an ending to this grieving process.
Disenfranchised grief and ambiguous loss within the context of chronic illness can trigger emotions like sadness, frustration, and anxiety along with questioning whether you have the “right” to grieve. It’s crucial to acknowledge these feelings, seek professional help if needed, and develop coping strategies to navigate the ongoing challenges of supporting a loved one with chronic illness. But more on that later.
The 7 stages of Grief
Grieving is a journey we all take at some point in our lives, and understanding its stages can help us navigate through it. In 1969, Psychiatrist Elisabeth Kübler-Ross introduced the concept of the “Five Stages of Grief” in her book On Death and Dying as a pattern of adjustment to loss. These stages – denial, anger, bargaining, depression, and acceptance – offer a framework for processing the many emotions that accompany loss. Over the years, stages have been added and modified yet the concept remains the same.
Grief isn’t a one-size-fits-all experience and Kübler-Ross herself later acknowledged that these stages aren’t set in stone. They’re more like signposts along the road, guiding us through our own journey of healing. Sometimes, we might find ourselves stuck in one stage for a while, while other times, we might skip stages altogether. It’s all part of the process, and there’s no right or wrong way to grieve. And it’s not just about losing someone we love; grief can also hit us hard when we’re faced with the challenges of a loved one’s chronic illness.
Despite the tweaks and additions made to the model over the years, Kübler-Ross’s insights remain invaluable in helping us understand the rollercoaster of emotions that come with grief. So, let’s take a closer look at these stages and what they mean for our healing journey.
Stage 1: Shock and Denial
People in this stage may feel:
Shock
Denial
Confusion
Fear
Disbelief
Vulnerability
Emotional Numbness
Distress
Shock and denial help you cope and survive. When hit with news that knocks the wind out of you, your first instinct is often disbelief. You tell yourself, “Nah, this can’t be happening”. It’s like your brain is trying to shield you from the harsh reality by pretending it’s not real. This is a natural defense mechanism—a way of protecting ourselves from an upsetting reality. Shock and denial helps you cope and survive.
I remember vividly when my husband first got sick and later diagnosed with an incurable illness; I found myself living in denial. Just the thought of our lives changing so drastically, and not for the better with no end in sight, was too overwhelming for me to confront. Call it self-preservation, but denial was the only way I could avoid falling apart.
Denial serves a purpose—it can keep us safe, as Jonathan Scholl, a clinical social worker at a Harvard-Affiliated hospital, explains. It provides temporary relief to those who may not have the capacity to face a problem head-on. However, this protective shield can also hinder us. It may lead us to delay seeking help or treatment, believing that the problem will somehow resolve itself.
Personally, I postponed seeking therapy until I reached a breaking point because I kept holding out hope that my husband would miraculously get “better.” I also didn’t talk about it to others or share how I was feeling because if I did talk about it that meant what we were going through was real. Denial, though offering temporary relief, can sometimes prevent us from taking necessary steps towards healing and ask for the support we truly need.
Stage 2: Pain and Guilt
People in this stage may feel:
Overwhelmed
Intense pain
Guilt
Regret
Self-blame
Anguish
Loneliness
Hopelessness
Remorse
As reality sinks in, it hits you like a ton of bricks. The pain is intense, almost unbearable. You find yourself replaying every little detail in your mind, the classic, “Coulda, Woulda, Shoulda-s.” What if I had encouraged him to see the doctor sooner? What if we hadn’t pursued all our dreams so quickly, causing undue stress? Guilt creeps in, weighing heavily on your shoulders. You start to wonder if you’re somehow to blame for what happened.
It’s not uncommon to seek out someone or something to blame, even the person who is ill. Why didn’t they take better care of themselves? Why didn’t they reduce the stress in their life? But here’s the thing: feeling guilty doesn’t necessarily mean you are guilty. Lisa Williams from What’s Your Grief.com explains that grief can be an irrational process, and our minds often search for reasons to feel guilty, even when we’re not at fault.
For many of us, the idea that we’re not in control is terrifying. We cling to the belief that if we’re responsible for what happened, then there’s some order to the universe. But the truth is, life can be messy and unpredictable, and sometimes, there’s no rhyme or reason to the chaos. And that’s a scary thought indeed—because it means we’re not always in control.
Stage 3: Anger and Bargaining
“Bargaining is a defense against the feelings of helplessness experienced after a loss. It happens when people struggle to accept the reality of the loss and the limits of their control over the situation.”
SABRINA ROMANOFF, PSYD
People in this stage may feel:
Anger
Frustration
Guilt
Sadness
Confusion
Resentment
Anxiety
Angry doesn’t even begin to describe it. You’re seething—with your spouse, with your kids, with the doctors, with the universe itself. Every misplaced toy or forgotten piece of clothing feels like another jab at your already-frayed nerves. “We don’t deserve this!” you shout, feeling the weight of injustice bearing down on you. “My kids don’t deserve this!” The frustration boils over, and anger becomes your constant companion.
According to Sanjay Gupta at VeryWellMind, there are two types of bargaining: bargaining over the past and bargaining in the present. When it comes to the past, you find yourself consumed by “what ifs.” What if he hadn’t gone zip-lining that day in Costa Rica? What if he had chosen tennis over football in high school and had a few less concussions? If only you could turn back time, maybe things would be different.
But it’s not just about dwelling on the past; it’s about bargaining in the present, too. You find yourself making deals with yourself or with a higher power. “I promise I won’t take health for granted if you just make him well!” you plead. You’ve even had discussions about the lessons learned from this life stressor, vowing to make positive changes—but not at the expense of his health. You’re bargaining with destiny, throwing in desperate “pleases” and “just this once, come on!” in a last-ditch effort to strike a deal. Inside, frustration bubbles up, and you can’t help but question why this had to happen, why it had to happen to them, to your family.
I remember pleading, “Ok, God, I get it. I need to be more grateful with what I have and not lose sight of what’s important in life. Lesson learned. Now give my husband his health back.” My husband also admitted to having similar “conversations” with God. Spoiler alert: it didn’t work. I knew it most likely wouldn’t but if there was even just the slightest 1 in a million chance….it gave me a little bit of of hope and the slightest sense of control.
Once again, the need for control rears its head. Anger at the loss of control and bargaining to regain it—a desperate attempt to make sense of the chaos and reclaim a sense of power in the face of uncertainty.
Stage 4: Depression and Loneliness
People in this stage may feel:
Withdrawn
Sadness
Depression
Loneliness
Despair
Emptiness
Fear
This stage often feels like an endless tunnel with no light in sight. The sadness that accompanies this stage is profound—it hits you like a ton of bricks knocking you to the floor. The world has dimmed, and you’re left to navigate through the darkness alone. Clinical Psychologist Iris Waichler highlights that depression can stem from repressed anger as the full weight of the loss becomes apparent.
I remember feeling so incredibly depressed and hopeless thinking about my husband not getting better. Both our lives had changed, and not for the better. Watching him not being able to get out of bed and having to give up a career he was thriving in crushed me. Him not being able to interact with the kids without worries and me having to navigate this alone so as not to worry him with my feelings was and is heartbreaking.
I remember feeling overwhelmed by the profound loneliness during this stage. It wasn’t just about missing my partner’s physical presence—it was the absence of the shared experiences we once enjoyed. Simple pleasures like skiing, hiking, or dining out together felt like distant memories, reminders of a life that now seemed out of reach and one that will remain out of reach.
According to researchers at Harvard Health, isolating yourself during this stage or having a predisposition to depression can increase the risk of developing Major Depressive Disorder. This underscores the importance of reaching out for support and connection, even when it feels like the hardest thing to do.
It was during this time of crushing depression that I found mindfulness. Now a buzz word and an often used cliche, I originally dismissed it as meditation in the traditional sit-in-the-lotus-position-and-say-ommmm type of way. I think I actually stumbled upon its usefulness by accident as a way of maintaining my sanity.
I remember walking up the stairs ready to crawl in to bed and hide from the world. But with having two young kids who need a functioning parent, this wasn’t possible. So I walked up the stairs and only focused on taking one step at a time-literally, without thinking about anything else. Something strange happened and I felt the weight lesson a bit and I could continue to function. Having found a glimpse of relief, I kept it up and I think it truly saved me- and continues to save me when my emotions become too much.
At long last, relief begins to seep in as the physical and depressive symptoms of grief gradually subside. You find yourself slowly adjusting to your new reality, discovering a sense of calm, happiness, and well-being returning to your life- without guilt.
For me, this stage marked a turning point—an acknowledgment that while our life may be vastly different now, different doesn’t necessarily equate to bad. I began to recognize that even with the challenges, there are opportunities for growth and positive change. Acceptance, once a distant concept, now seems within reach. You pick yourself up and dust yourself off. It’s time to rebuild, one step at a time. You’re figuring out how to move forward and create a new normal for yourself.
It’s during this time that I started a gratitude journal and thinking about everything that had changed for the better (yes there are things!) since he had gotten sick.
You are starting to feel less overwhelmed and its time for an emotional renovation. This stage is all about asking yourself what types of changes do you want to make to build a new life and where self-care starts making a comeback. Do you need to reprioritize? Take up a new hobby that brings you joy and fulfillment? You’re brainstorming, planning, and scribbling down blueprints for your comeback story. Each step forward feels like laying a foundation for a stronger, more adaptable version of yourself in this new chapter.
For me, it was looking at everything we had just gone through and seeing that I survived. I am stronger than I thought and I’m a better person for this experience. While it ain’t over and it will never be over, I am not only aiming to survive, I am determined to thrive. It was about the third time I went through this stage that I decided to start a blog. This blog has been about self-care, assigning meaning to this journey and sharing with others what I wish I had known in the beginning, even though we still have to experience this journey ourselves.
You’ve made peace with what happened. You stop expecting things will return to how it was pre-illness. It doesn’t mean you’re okay with it, but you’ve accepted it as part of your story. And with that acceptance comes hope for the future. You’re focusing on what you can do and what your partner can do versus the limitations. You start to create a new purpose. While this is a hard journey, many good things have come from it. You’ve got this.
I’d like to think I’ve been in this stage, even for just the briefest of moments but little setbacks can send me back to previous stages. However, each time I revisit a stage, I go through them a little quicker and get a little bit stronger. I’m not as quick to hide my feelings or minimize them. I have my toolbox ready to go.
Tips for Coping
Coping with loss is one of the biggest challenges you will ever have to face. Remember, your loss is valid as are all the emotions you experience that go along with it. There are also healthy ways to cope with the pain so that you can not only survive, but thrive. I previously alluded to some things that I have done to cope with this emotional rollercoaster but here are some tried and true ways to help you get through challenges and changing times:
The Basics:
Create a routine. A good routine can reduce stress and provide us with some much needed predictability and stability. Here are some ways to create a healthy routine:
Wake up at the same time each day and go to bed at the same time each night
Eat at your regular meal times even if you are not hungry
Take a shower and get dressed every day
Make a to-do list and cross things off as you go to give yourself a sense of accomplishment (and to reduce the mental load of having to remember things you need to do)
Take care of your mental and physical health. Neglecting yourself-mentally and/or physically- delays the healing process and increases the risk of experiencing complicated grief (more on that in the next section).
Walk or sit outside when possible or, even better, schedule a time to do this
Name what you are feeling, look back at the different emotions above for each stage. Sometimes just putting a label on what you are feeling can help you begin the healing process. For an in-depth look at feelings, I highly recommend Brene Brown’s book, Atlas of the Heart.
Limit alcohol intake. Self-medicating only masks emotions. And guess what, emotions that are not dealt with don’t go away and only delays healing. Feel all the feels, no matter how hard it is.
Eat fresh food and hydrate with water, limit processed foods.
Keep up with your own medical appointments
Share with your doctor what is happening. I did this, albeit reluctantly, but my doc had great ideas and connected me to some valuable resources
Set aside time to cry and grieve. It could be for 15 minutes at 7pm every night or whenever you are able to schedule it. This gives you a sense of control in the grief process and also allows you to not keep putting feeling those difficult emotions on the backburner.
Connect with people. Outcomes are better for people who have a good support network. As much as you want to isolate (believe me, I know), push yourself to reach out to friends, family, professionals and/or others who can relate to what you experiencing.
Set aside time to hang out with a friend and don’t be afraid to share what is going on
Don’t turn down social invitations that you could potentially attend due to wanting to isolate
Seek out individually therapy and/or support groups. I tried out my first support group and, let me tell you, for the first time in 4 years I didn’t feel alone and felt so understood that I wanted to cry (maybe I did cry). I felt like I had found my people.
Reingage or recommit to hobbies. During COVID I returned to my love of photography and took a couple of classes. It brought me so much joy and was an activity that allowed me to be present. When my husband got sick I didn’t have the time or energy to commit to photography but found that even just thinking about photography made me feel better. I also found that by blogging I was able to do research on chronic illness AND engage in what has become for me a very therapeutic writing process. Win-win.
Exercise. Nothing like those natural endorphins, serotonin and dopamine to make you feel better. Even when I don’t want to, I make myself exercise. Never once have I regretted an exercise session and it does wonders for my anxiety and ADHD.
Mindfulness. As I stated previously, this got me through the hardest times. Only focusing on the present moment makes this journey so much more manageable and less overwhelming. Click here for 31 mindfulness ideas from Betterup.com.
Make a list of everything positive that has come from this situation.
Get involved with a cause that relates to your loved ones illness. Whether that’s donating to a cause related to the illness, volunteering or advocating for those who don’t have a voice.
Dealing with disenfranchised grief can feel like an uphill battle, especially when society overlooks or brushes off your pain. This lack of recognition can worsen feelings of depression, make you think about hurting yourself, and make it tough to get through the day. When grief lingers longer than what’s considered “normal,” it can turn into what experts call “complicated grief.” The Mayo Clinic defines complicated grief as grief that is intense, persistent and debilitating.
While there is no consensus among mental health professionals on how long grief should last, especially with disenfranchised grief, the industry standard is often more than a year. But, when in doubt, seek help, and don’t wait for that one year mark. Here are some signs to look for indicating you may need professional support:
Any thoughts of self-harm and suicide. If you ever feel like hurting yourself or have thoughts of suicide, reach out for immediate help. You can call 911 for emergency assistance or dial 988, the Suicide and Crisis line, which is available 24/7.
Your grief isn’t getting any better with time. There’s no strict timeline for grief, but if you find yourself struggling to function normally for months on end, it might be time to seek help.
Your grief is starting to affect your day-to-day responsibilities and relationships
Remember, asking for help doesn’t mean you’re weak—it means you’re taking care of yourself. Don’t hesitate to reach out if you need support at any point in the grieving process.
Final Thoughts
“The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same. Nor would you want to!”
-Elizabeth Kübler-Ross
In conclusion, navigating grief when your spouse is battling a chronic illness is a uniquely challenging journey, often accompanied by feelings of disenfranchised grief and ambiguous loss. The Seven Stages of Grieving can provide a roadmap, but remember, there’s no one-size-fits-all approach. It’s crucial to practice self-compassion, acknowledging the complexity of your emotions, and seeking help when needed. Whether it’s through therapy, support groups, or leaning on friends and family, know that you’re not alone in this journey. Together, we can navigate the ups and downs of grief with patience, kindness, and the knowledge that healing is possible. While the illness may not go away, the difficult emotions are fleeting and you will feel joy, hope, happiness again.
If you or someone you love is contemplating suicide, seek help immediately. For help 24/7 within the United States contact the National Suicide Prevention Lifeline by calling or texting 988. In case of an emergency, call 911.
Tyrrell P, Harberger S, Schoo C, et al. Kubler-Ross Stages of Dying and Subsequent Models of Grief. [Updated 2023 Feb 26]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK507885/
[…] up despair and questioning if it’s worth going on (see my post on the stages of grief here). We’ve all been there during life’s worst curveballs. Feeling completely hopeless in […]
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