How the 5 Stages of Grief Apply to Chronic Illness

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 to fit the perspective of living with a chronic illness.

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For chronic illness, this model is not linear. It is a circle that loops back around, over and over. Identifying these feelings can help us feel less alone and make sense of what we are feeling. 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!

Shock and Denial

One moment you are thumbing through what to wear in your closet, the sun is shining through the window and the entire day is ahead of you. The next, you are rolling out of bed in agonizing pain after waking up at least six times throughout the night; this is your norm. Perhaps you have lived with chronic illnesses for most of your life and it has always been your norm, only you have been dismissed by doctors and left without answers. 
When you finally get a name or answer to your health issues that were ignored for decades, while you were labeled as a hypochondriac by people you thought cared about you, it can be a shock.

There are still times I go into my doctor’s office begging for another set of labs. “Please, test me for metals and maybe my vitamin levels again. I know my thyroid is perfect and my electrolytes are beautiful, but I can’t accept that I am stuck with this pain forever. Maybe, just maybe, there is something else,” I said to my doctor last week. Usually, I get the results and they are perfect except for maybe a few small flags, but nothing that should make my body feel like I was thrown down a flight of stairs just before getting trampled on by a stampede, when all I did was sit at my desk or get ready for bed.

That’s denial, my friend. It’s like you finally get that answer you have searched for and you want to light it on fire and ask for a redo. 
Denial is also working full-time when your body should not work at all, but you have bills to pay. So you work all day until you literally collapse in bed, too tired to shower, muscles spasming everywhere and every atom of your existence is in agony. 
Denial is smiling and listening to your friend’s conversation while your vision fades and your hands and lip go numb, but you don’t want to say anything because it’s normal for you and you want to be normal for them.

Anger

This might comes out in moments when you’re doing something mundane, like brushing your teeth, and then you just start sobbing, “Why me?” You question everything, combing through your past and present to investigate where you went wrong or what if you had taken better care of yourself when you were younger.

“Why me?”

Why, though? Why, when you are such a fighter and you were always so positive and you did everything by the book and still, here you are, suffering. It isn’t fair. 
The cherry on the cake is when people tell you that maybe exercise would help… but when you exercise, your heart rate skyrockets and you get chest pain and bronchial spasms and feel like passing out. Or, “You need to heal your childhood traumas,” gets thrown at you for the fifth time, but you have done nothing but read inspiring self-help books, healing, and even see 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? Even after two solid years of eating clean, cutting out preservatives, processed foods, dyes, additives, and fillers and eating a strict anti-inflammatory diet, juicing, supplements, etc. the changes are minimal.
 Yes, there is some relief and my migraines are minimized, but that doesn’t put a dent into this mountain of health issues. I have tried all the protocols, diets, and supplements and will probably continue trying new ones throughout this cycle of grieving. Maybe Anna could help her arthritis if she stopped drinking her Diet Coke and did yoga, or Steve could lighten up on the drinking and late-night fast food binges, but we are not all Annas and Steves.

There are moments when I am pissed. I am furious. I am exhausted and in pain, and I am so very angry. But these moments pass and I continue to fight and be positive. Let us move through the steps and keep your advice to yourself unless it is requested. We don’t live in this stage, but we visit it often.

Bargaining

“I promise I won’t eat anymore chocolate peanut butter cups in my car on the way home from the grocery store. I am going to juice every morning. If I do better, maybe I will feel better? I will be more spiritual, more positive, and even do yoga.”
That is the sound of bargaining for a better outcome. Yes, lifestyle changes are important to our health and especially balancing stress. Don’t confuse this with not taking responsibility. Be responsible! But know that this roller coaster of being disheartened and motivated is the pattern of grieving. We often think that maybe we didn’t try hard enough, and part of the denial aspect is thinking that maybe if we tried harder there could be a solution.

Depression and Anxiety

Depression is the feeling of impending doom, but that feeling sticks around, even when you are happy. It slithers into your existence and it isn’t always tied to a memory or life experience; it just exists. Even on a good day, that feeling can hang around. You can hide it and you can pretend it isn’t there, but it’s the nervous butterflies in your stomach that grow into your chest. “Positive thinking” it away is not a thing. Depression is not always a mentality you can control.

Though depression and anxiety do not discriminate, they can be more prevalent in the disabled or chronically ill community. Imagine building up your goals and life-long dreams. Your ambitious personality and positive mental attitude kicks ass and you have the world at your fingertips, but you keep getting knocked down due to uncontrollable circumstances like your health. Sure, you can dust yourself off and try, try, try again! However, it’s hard and it sure gets old when decades go by and you watch your peers buy houses and new cars, and live successful lives. Meanwhile, you try to figure out how you can afford not having income for weeks or months at a time as you recover from surgery, balancing which medications you can afford while making sure there is enough money left over for a cheap dinner.

You then start over, just to ride the big wave till you crash again. It can also be lonely, even when you have supportive friends and family. It’s a place not many people understand. It’s an unpaid full-time job. It’s exhausting. It’s scary. Support groups are helpful; finding a community of people with similar health issues helps you cope, not feel alone, while also educating you on your illness.

Anxiety is an issue as well because having a chronic illness can be traumatic. For example, I had WPW Syndrome and my heart rate would get in to the 250s. I have also had many scary arrhythmias so when I hear the hospital heart rate beeping sound on a TV, it gives me major anxiety. It is a trigger for me, as well as fast rhythmic tapping.

Acceptance

Put your warrior paint on! You have your medical records organized, tests, and labs done. You are making progress with answers or even starting new treatments. You got this! Or maybe you don’t, but you have just accepted the cards you are handed and will make it work. This stage varies for many and is a sliding scale. For some, it could mean you are managing. For others, this stage comes and goes, varying on what condition your health is in. Again, this process is not linear… it’s a scribble!

You might visit the land of acceptance often. Maybe you have a beach house here or maybe you are planning a vacation here, but more than likely, you never retire here.

We are nomads of this grieving process. We jump around, visit, flip flop between two stages, and circle around. Acceptance is the best place to be. It’s when we feel really positive (and we’re not just faking it). It is when we fight for awareness and advocacy. It is when we make progress or actually have a less painful day. It’s when your treatment is manageable and you’re coasting.

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 are not alone. It’s important to manage your mental health as well as your physical health.