The Kübler-Ross model of the five stages of grief was pioneered by a Swiss-American woman named Elisabeth Kübler-Ross. Her book On Death and Dying elaborates more on this theory and her studies. Her model of the five stages were my inspiration but I put a twist and my own touch on the stages in the perspective of living with a chronic illness.
For chronic illnesses, this model is not linear. It is a circle that loops back around, over and over. Identifying these feelings helps to not feel alone and to make sense of what we are feeling, that it is actually normal. If you don’t have a chronic illness, maybe you want to understand what goes on in the mind of someone who does, and thank you for that!
*Photo by Winship Photography
Shock and Denial
One moment, you’re casually deciding what to wear, the sun shining through the window, and the day stretches out ahead of you. The next, you’re crawling out of bed, wracked with agonizing pain after waking up multiple times throughout the night. This is your reality. Perhaps you’ve lived with chronic illnesses for most of your life, and it’s always been this way, only to be dismissed by doctors and left without answers.
When you finally get a name for your health issues—issues that were ignored for decades while you were labeled a hypochondriac by people you thought cared about you—it can feel like a shock.
There are times when I walk into my doctor’s office and beg for another round of tests. “Please, test me for metals, check my vitamin levels again. I know my thyroid is fine and my electrolytes are beautiful, but I can’t accept that I’m stuck with this pain forever. Maybe, just maybe, there’s something else,” I said to my doctor last week. Usually, I get the results and they’re perfect, maybe a few small flags, but nothing that would explain why my body feels like I was thrown down a flight of stairs and trampled by a stampede, just for sitting at my desk or getting ready for bed. That’s denial, my friend. It’s like finally getting the answer you’ve searched for, only to want to light it on fire and ask for a redo.
Denial is also working full-time when your body is telling you it shouldn’t work at all, but you have bills to pay. So you push through the day until you literally collapse in bed, too tired to shower, muscles spasming everywhere, every atom of your body in pain.
Denial is smiling and pretending to listen to your friend’s conversation while your vision fades and your hands and lips go numb. You don’t want to say anything because it’s normal for you, and you want to appear normal for them.
Anger
There are moments when you’re doing something mundane, like brushing your teeth, and suddenly, you’re sobbing.
“Why me?”
You question everything—going through your past and present to see where you went wrong or wondering if you could’ve taken better care of yourself when you were younger.
“Why me?”
But why, though? Why, when you’ve been such a fighter, so positive, and did everything by the book, yet here you are, suffering? It just isn’t fair.
The cherry on top is when people suggest that maybe exercise would help, but when you try it, your heart rate skyrockets, you get chest pain, bronchial spasms, and feel like you’re about to pass out. Or when they tell you to “heal your childhood traumas” for the fifth time, but you’ve already read the self-help books, worked on your healing, and seen a therapist. “Maybe if you changed your diet or took this supplement…” Sure, nutrition is important, but what haven’t we tried at this point? After two solid years of eating clean—cutting out preservatives, processed foods, dyes, additives, and fillers, sticking to a strict anti-inflammatory diet, juicing, and taking supplements—the changes are minimal.
Yes, there’s some relief, and my migraines have lessened, but that doesn’t even begin to make a dent in this mountain of health issues. I’ve tried all the protocols, diets, and supplements, and I’ll probably keep trying more as I go through this cycle of grieving. Maybe Karen could ease her arthritis by stopping diet soda and doing yoga, or Steve could cut back on the drinking and late-night fast food binges, but we’re not all Karens and Steves.
There are moments when I’m pissed. I’m furious. I’m exhausted, in pain, and incredibly angry. But these moments pass, and I continue to fight and stay positive. Let me go through these steps in my own time, and keep your advice to yourself unless I ask for it. We don’t live in this stage, but we visit it often.
Bargaining
“I promise I won’t eat any more chocolate peanut butter cups in my car on the way home from the grocery store. I’m going to juice every morning. If I do better, maybe I’ll feel better? I’ll be more spiritual, more positive, and even do yoga.”
That’s the sound of bargaining for a better outcome. Yes, lifestyle changes are important to our health, especially when it comes to balancing stress. But don’t confuse this with avoiding responsibility. Be responsible! But understand that this rollercoaster of feeling disheartened and motivated is part of the grieving process. We often wonder if we didn’t try hard enough, and part of the denial is thinking that if we just tried harder, there could be a solution.
The individual is clinging to the threads of hope, however thin and worn the fabric may be. Breakthrough treatments in medicine or intervention by a spiritual being or force are seen as a source of a temporary suspension of the inevitable outcome. –eCondolence
Depression and Anxiety
Depression feels like an impending doom that lingers, even when you’re happy. It slithers into your existence, not always linked to a specific memory or experience—it’s just there. Even on good days, it can hang around. You can try to hide it and pretend it isn’t there, but it’s that nagging feeling in your stomach that grows into your chest. Positive thinking can’t make it disappear. Depression isn’t just a mindset you can control—it’s also chemistry.
Though depression and anxiety don’t discriminate, they can be more prevalent in the disabled or chronically ill community.
Imagine building up your goals and life-long dreams. You’re ambitious, driven, and have a positive attitude. You feel like the world is at your fingertips, but you’re constantly knocked down by circumstances beyond your control, like your health. Sure, you can dust yourself off and try again, but it gets exhausting when decades go by and you watch your peers buy houses, new cars, and live successful lives. Meanwhile, you’re struggling to figure out how to afford months without income while recovering from surgery, trying to balance which medications you can afford, all while making sure there’s enough left for a cheap dinner. You start over, just to ride the wave until it crashes again.
It can also feel incredibly lonely, even with supportive friends and family. It’s a reality that not many people understand—an unpaid full-time job that’s exhausting and scary. Support groups can be really helpful; finding a community of people who share similar health issues helps you cope, not feel isolated, and educates you about your condition.
Anxiety can also be a major issue because living with chronic illness can be traumatic. For example, I had WPW Syndrome, where my heart rate would spike into the 250s. I’ve experienced many scary arrhythmias, and now, when I hear the hospital heart rate beeping sound on TV, it triggers major anxiety for me. It’s a reminder of those terrifying moments, as is the fast rhythmic tapping sound.
Acceptance
Put your warrior paint on! Your medical records are organized, tests and labs are done, and you’re making progress with answers or starting new treatments. You’ve got this! Or maybe you don’t, but you’ve accepted the cards you’ve been dealt and are doing the best you can. This stage varies for everyone, and it’s not a straight path. For some, it means managing their health. For others, it fluctuates depending on their health status. Again, this process is not linear—it’s more like a scribble!
You might visit the land of acceptance often. Maybe you’ve built a beach house there, or perhaps you’re just planning a vacation. But more likely, you never really retire there. We are nomads of this grieving process, jumping between stages, flip-flopping, and circling back.
Acceptance is the best place to be. It’s when we truly feel positive—not just faking it. It’s when we fight for awareness and advocacy. It’s when we make progress or have a less painful day. It’s when our treatment is manageable, and we’re coasting along.
These are the five stages of grieving your chronic illness. Keep a journal, see a therapist regularly, and join support groups. This ride is tough, but you’re not alone. It’s just as important to manage your mental health as it is to care for your physical health.
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