Grief During Chronic Illness
I remember when I started to hear the word “chronic” from the mouths of people that were involved in my health. I recall the acupuncturist who asked how long my symptoms had been happening. She nodded knowingly at my answer, “Oh, so this is chronic.”
I hear the doctor who seemed pleased with himself when diagnosing me with something that was simply repeating what I said I was experiencing, “Ah hah! Sounds like chronic fatigue.” I was surprised to hear this word reflected back to me.
When I looked at my health deductions and expenses for the year, the proof was staring me in the face through high numbers. Thousands of dollars were spent hopping from doctor to doctor, trying supplement program after program, acupuncture, herbs, mind-body practices, counseling, meditation retreats.
The list of efforts to prevent my declining health was shocking. It was indeed chronic.
Grief at the Diagnosis of Chronic Illness
Eventually, the management of the symptoms I experienced became too much for the body to handle. After unknowingly living in water-damaged buildings, finding mold, dodging wildfire, a pandemic, two Covid vaccines and more water-damaged buildings, I ended up in a severely depleted inflammatory state with an illness called CIRS (Chronic Inflammatory Response Syndrome).
Some in the world may recognize this as “mold illness,” but the reality is CIRS is caused by much more than just mold. Folks with a genetic predisposition who then have biotoxin exposures to molds, fungi, bacteria, seafood, spiders and/or viruses can become stuck in their innate immune system. The body doesn’t identify and get rid of the toxins adequately.
Over time, the inflammation that is generated from the innate immune system causes damage to the body’s precious energy source, the mitochondria, as well as to the brain and multiple organ systems in the body.
Sadly, many folks with chronic illness don’t get to their root cause and suffer for years. Luckily in my case, I found a diagnosis and a research-based protocol proven to reverse CIRS.
However, getting to the point of diagnosis and through the Shoemaker protocol brought me close to an old friend I once knew, called grief.
Flavors of Grief During Chronic Illness
The experience of chronic illness is one not many understand until they or their loved one goes through it. Here are some of the flavors of grief one might experience.
Folks with chronic illness and CIRS grieve the time they wish they could be with friends and family instead of in bed, cleaning or seeking appropriate health treatments.
Also, folks with chronic illness and CIRS grieve the employment they used to be able to hold as they may be forced to be on disability or go online as the heal.
Folks with chronic illness and CIRS grieve the dreams they had to start a business, buy a home or start a family.
Folks with chronic illness and CIRS grieve their ability to be active, go outdoors and travel. Fatigue, nervous system changes and environmental toxins can impact the pleasure of moving the body, being in nature and on vacations.
Folks with chronic illness and CIRS grieve their identities, their moods and their minds. They are not able to show up in the way they used to in community. Agitation is common and the mind may be foggy or critical.
Folks with chronic illness and CIRS grieve their creative expression. Energy often does not support creativity in hobbies and self-expression through clothes and makeup.
Handling the Grief of Chronic Illness
It took me time to realize I was grieving. And then the loss of interest in life made sense. While we usually relate grief to the death of loved ones and animals, we can miss how the numbness, sadness and collapsed body are being held in a state of grief during chronic illness.
Noticing grief, naming it and beginning to feel the grief is the start of healing through the experience. Acknowledging that grief comes from a deep love for life as we knew it helps those with chronic illness to honor the changing ways of the body, mind and life experience.
Dear Grief,
Thank you for reminding me how much I loved my ability to move, to participate, to
engage, to create and to contribute. May this experience of chronic illness deepen my ability to
be compassionate to myself and others in pain. May my experience wake people up to
awareness of this issue in the world and create more understanding for folks navigating CIRS
and chronic illness. Thank you.
Learn more about Melanie Pensak’s work at https://www.melaniepensak.com/
