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Member Spotlight: The Ongoing Grief Cycle of Life With Chronic Illness

Posted on May 21, 2020

Getting a bout of pneumonia or having surgery can render a person miserable for many days or weeks. Family rally around you in an attempt to make you more comfortable for the time that you are incapacitated. Friends practically trip over themselves delivering comfort foods, flowers, and cards, or calling to see how they can help you. Infections and surgeries are acute in nature, meaning they resolve themselves within weeks or months.

Chronic conditions and chronic pain, on the other hand, often do not resolve and can pose a lifetime of pain and suffering. The friends that were previously tripping over themselves to fill the gaps for you slowly prove harder and harder to find. When you call, the call goes to voicemail. The doctors’ appointments family members used to miss work to attend now cause them to pause and wonder if they can be in it with you for the long haul. They consider whether it is worth running the risk of incurring the boss’ ire by calling out sick so frequently on your behalf.

It is devastating to hear the doctor say that the cancer treatment you will have to undergo will require a three-year plan. It is heartrending knowing that the bilateral hip replacements you had did not help relieve your hip pain, primarily because a rare disease — for which there is no hope of a cure — ravishes the remainder of your skeletal system. Not to forget, you already have two life-threatening diseases and you are now diagnosed with yet another, and another, and still another.

When is enough, enough? When does it become too much? When do you yell, “Uncle”? When do you question God’s love for you that you learned from the Bible throughout your childhood and youth?

I find answers in Bible scriptures. “My Grace is sufficient for thee: for my strength is made perfect in weakness.” (2 Corinthians 12:9) “I will never leave you nor forsake you.” (Hebrews 13:5) “When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee.” (Isaiah 43:2) My faith assures me that while our family and friends may appear to have abandoned us, our loving Heavenly Father has never, nor will ever, leave us to travel our path alone.

Most chronic illnesses produce not one, but two vicious cycles. The oft-discussed cycle of pain-insomnia-depression is important. However, there is a less discussed, perhaps lesser-known reality regarding chronic illnesses and pain. Elizabeth Kübler-Ross describes it best as the five stages of grief. When the Swiss-American psychiatrist, a pioneer in near-death studies, originally penned these stages, she did so as a description of the experience of those facing their own mortality experience.

As life expectancy has lengthened, health care professionals have realized that people living with chronic illnesses and chronic pain also undergo a grief cycle. This grief cycle starts with denial and ends with acceptance. Previously it was thought that people proceeded from stage one to stage five in a consecutive manner and then they were done. Over time, studies showed that people might actually cycle through the stages multiple times until they achieve acceptance. Each cycle may take weeks, months, or even years. With each new diagnosis, the cycle can start over again.

Denial is the first of the five stages of grief. Life makes no sense. We are in a state of shock and denial. However, denial helps us to pace our feelings of grief. It is nature’s way of letting in only as much as we can handle.

The next stage is anger. Anger is a necessary stage. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal.

Following anger is bargaining. We become bogged down and live in a world of, “If only …” and “What if …” statements. We want life returned to what it was. We offer to do anything not to feel the pain of the loss.

On the heels of bargaining, we find depression. A person may deal with depression due to the situation at hand: failing health, facing mortality, or the addition of another disease. This depressive stage feels as though it will last forever. This depression is a response to a loss of health and, by extension, loss of one’s self. Depression due to chronic health conditions is often associated with increased pain and insomnia.

Imagine with me that a person diagnosed with osteonecrosis had been dealing with their loss of mobility and professional life. All the issues surrounding their loss were over and they had arrived at acceptance and were beginning to feel some hope. Sadly, after weeks of not feeling well and multiple tests later, they got a diagnosis of lupus. The grief work they had previously completed is reset as they now grieve a new loss. This new disease comes with more pain and more limitations. At the same time, less empathy can be expected, as no one understood what the big deal was with the first diagnosis and why the person couldn’t just “get over it.”

The person goes back to the beginning and starts over again: denial, anger, bargaining, and depression. The only difference this time is, when they arrive at acceptance and have had no worsening health issues, they bask in the newfound hope they have. They embrace their new norm. They start to make plans for the future. Maybe they will finally start a home-based business. Maybe they can visit with family more often. Maybe they will recall how they felt in the early days of diagnosis, chronic pain, and loss, and reach out to others to offer comfort.

I believe the mantra, “He who feels it knows it.” We are wounded warriors, but we are warriors nonetheless. We endured the fire and the flood. It made us stronger.

One of my favorite Bible texts that helps me to make sense of why I endure what I have to endure can be found in 2 Corinthians 1: 3-4. “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.”

In closing, I would also like to share the most meaningful mantra I learned in my counseling courses: “Suicide is a permanent solution to a temporary problem.”

I do not know what stage in the grief cycle you are currently in, but I want to encourage you to stay the course. Never throw in the towel! Never give up!

This article was written by MyChronicPainTeam member Juliette B. as part of the Member Spotlight Series. Juliette is a registered nurse, lay counselor, and chronic pain patient who writes under the pseudonym Juliette B.

Do you want to be a part of the MyChronicPainTeam Member Spotlight Series?
Let us know here: support@MyChronicPainTeam.com

A MyChronicPainTeam Member said:

Thank you so much. My first day in the app, started with feeling hopeless. I can relate to the highs and lows of hoping this new drug will do the trick,… read more

posted 20 days ago

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