The Five Stages of Grief Loop with Chronic Illness

The first time I heard of the five stages of grief was on an episode of one of my all-time favorite shows, Frasier. In the episode, titled a punny “Good Grief” (Season 6, Episode 1), Frasier deals with the loss of his job as if it were the loss of a loved one. Since seeing that episode for the first time all those years ago, and seeing it fifty times since, the stages of grief have stayed with me.

When I got diagnosed with POTS in 2014, after being sick for a couple of years at that point, I recognized the emotions I was experiencing as the stages of grief I’d learned about first on an episode of Frasier, and later in a psychology textbook when I took Psychology I in college. I figured I’d experience the emotions once and then just live with the acceptance. And while I do fully accept that I’m sick, it’s the degree of how sick I am that I have trouble accepting sometimes. I’ve been experiencing all of the emotions in a nonstop loop, over and over again, like a Ferris Wheel of grief.

The five stages of grief were first written about by a psychiatrist named Elisabeth Kübler-Ross in 1969. It was written about in her book, called “On Death and Dying”, which was inspired by her work with terminally ill patients. While it was originally developed to describe the process terminal ill patients go through as they come to terms with their fate, it’s been more famously adopted by those who are grieving their family and friends who have passed away. 

Years after her original book was written, she co-authored another book with writer David Kessler, and it was released posthumously. In this book, her theory, or model, was expanded on, and now included any type of personal loss, the end of a relationship, drug addiction, major rejection, and more– including the diagnosis or onset of a disease.

In later years, Kessler proposed a sixth stage of grief, meaning.

The Five Stages of Grief (and how it relates to chronic illness)

Denial – The first stage of grief. While in the stage of denial, we are trying to minimize the overwhelming nature of our diagnosis (or diagnoses) and our symptoms. We are trying to pretend the symptoms are not even there, and possibly that the diagnosis never occurred. This just results in us over-doing it and flaring up, which makes us feel sicker. This alone can be a never-ending loop if you stay in you denial stage.

Anger – Feeling frustrated and angry over your diagnosis and symptoms can be a normal response in the beginning, until it becomes overbearing and intrusive. Typical thoughts might include asking “Why me?”, “What did I do to deserve this”, and “It’s not fair!” We may blame ourselves, or even others, for the affliction we’ve been diagnosed with and for our symptoms.

Bargaining – This can look different for everyone, but it’s not uncommon to try to bargain with either yourself or a higher power. This tends to be done with the purpose of trying to compromise or negotiate to either be able to do something you would otherwise be unable to do because of your illness, maybe to make a deal to not have symptoms, or lessen your symptoms. It might even be about making a deal so you don’t have whatever illness you have been diagnosed with. For me, bargaining is usually something along the lines of “if I’m able to do this today, tomorrow I’ll stay in bed and won’t do anything.”

Depression – Regardless of the stages of the grief, many people will fall into a depression after diagnosis. Feelings of helplessness are common, along with the realization that the diagnosis is chronic, meaning it will be long-term, and likely last for the rest of our lives. For most of us, with no cure in sight. Our feelings of depression will often cause us to pull inwards, becoming less sociable, and retreating from social events.

Acceptance – In the final stage, we have accepted our diagnosis. It does not mean that we no longer feel pain or that we’re cured, just that we understand and have embraced our fate of living with a chronic illness and its myriad of symptoms.

However, just because we have reached our acceptance stage of grief, it doesn’t end there for us.

The Loop

The five stages of grief are coping mechanisms where we’re entering false states of reality, resisting our actual realities. With many of the reasons someone may be experiencing the stages of grief, there is typically an end to it. Once they’ve reached the acceptance stage, they are often able to move on from their overwhelming grief.

With chronic illness, however, there is no end in sight. Every day is different, based on whatever symptom has presented itself that day. We’re at the mercy of our fragile bodies, and often our bodies are not very cooperative. Because it’s an ongoing issue, one that will continue for the rest of our lives, we may experience the five stages of grief in a continuous loop, sometimes in different orders, but relentless. It can change not only from day-to-day, from hour-to-hour, or minute-to-minute. 

I’ve been told by several doctors that I come to terms with and adjust to my diagnoses well. I think part of the reason for that is because I was diagnosed with OCD so young, so I’ve spent my life dealing with illness in one form or another. At 11, my IBS symptoms started, which added to the load for a young child. I’ve been collecting diagnoses my whole life, and that has made me accept each diagnosis I’ve gotten. But unfortunately, it doesn’t end with acceptance. It loops over and over again, and I’ve been in this continuous loop for over a decade now. Whenever I think I can get through it– climb over the other side of grief and live in my acceptance, I start from the beginning all over again like it’s day one.

We’re grieving just as much as anyone would grieve a death. We’re grieving the multitude of loss we may have experienced (I talk about the loss we experience in my last blog post). The loss is significant for many of us– loss of our jobs, the loss of money and our ability to make money (it costs a lot to be chronically ill, and many of us are unable to work), the loss of the life we once had. We’ve lost friends and family since getting sick, many either don’t believe us or they simply don’t care. We’ve lost our faith. We’ve lost our favorite hobbies and activities. 

The loss of the life we once had is a sizable loss to grieve. We’re grieving our former selves, our youth, the years lost. We’re grieving who we were and who we’ve become. We’re grieving so many things all at once, and usually we’re grieving on our own.

Adding Meaning

The addition of meaning to the stages of grief is pretty accurate, I think. I spent a long time trying to find my meaning in all of this. I realized a few years back that I could use what feels like a curse (my diagnoses) to help others.

I wanted to start a blog for years, and a couple of my doctors told me I should write a book about my experiences. I let the depression take over, and the meaning portion just kept getting pushed aside. In the fall of 2019, I started my Instagram, trying to slowly grow a following. I’m still trying to grow that following, but I finally took the plunge this year and began the blog.

The blog has been so cathartic for me. It’s been a great outlet to voice my thoughts, to continue to raise awareness, speak about being your own advocate, and show what chronic illness is like, all while staying as authentic as possible. I want others to feel less alone in their diagnoses.

This is my meaning. My meaning is part of my healing. It hurts when I don’t reach the amount of people I want to, because I have so much to say and I want to reach a broader audience to raise the awareness that so desperately needs to be raised. Even if it was just for myself, though, it’s been a healthy way for me to talk about everything from medical gaslighting, to my disability fight, to tips and tricks I’ve learned over the years. I wish I had found similar blogs when I first got sick, in order to find someone to relate to.

But maybe I can be that for someone else. One can hope. Either way, I have found my own meaning.