World ME/CFS Awareness Day is May 12th. This time three years ago, I shared about having ME/CFS and how I make meaning in it. The reality is that this is a chronic illness and there is no cure. I feel it’s important to post occasional updates to be real about my long-term residency in the kingdom of the sick.
What is it like to make a home here? Those of you with your own residency cards know what I speak of, the day in and day out of the same daunting reality. This is not a hero’s journey. The cultural narrative of get sick, get diagnosis, get treatment, get well, and get back to normal life does not apply to us.
Exertion of any kind (physical, mental, social, emotional) makes my pain and fatigue vastly worse. I have a limited body with energetic resources that are half of a healthy person my age, but my heart and soul are limitless. I do not stop longing and dreaming.
Longing to Share Wonder
I love sharing wonder in the natural world with my four year-old son. I long to meander for hours, losing track of time as we search for wildflowers, feathers, and other nature charms on our ranch. Instead I must rest inside while family members take him out adventuring. I would like to be able to hold his hand walking through the nature museum instead of trailing behind in my wheelchair.
There was that time last year when my son went picking blackberries from a wall of brambles in a Seattle suburb on a beautiful, summer day with his cousins. I got to see sun streaked pictures and enjoy the still warm berries when they returned back to the house. An incomplete memory I wish I shared all of with him.
Dreams of Freedom of Movement
I dream of experiencing freedom of movement, especially going on walks and hikes. I’ve lost touch with friends I used to travel the riverwalk with. Stories we might share as we trace the river’s course go untold. There is an intimacy in walking I never knew I could crave. Walking brings a unique companionship with the land I miss. The satisfaction of exerting myself up a rocky trail – that kind of purification is beyond my grasp.
I dream of going horseback riding again. When I could no longer go on trail rides, I lost my horse friends. I miss play sessions with my mares in the pasture. We once danced and lost all cares in the world. Instead another day passes that I have to exchange going to the barn for rest to relieve pain. I miss contributing to life on our ranch with the labor of repairing fences, watering the garden, and collecting firewood. Watching others do the work for me places me on the fringe, an outsider where I desire belonging.
This week, I postponed invitations to lunch and tea with my friends once again. Another week passes where I need to stay home. Rest and more rest. More often than not I need more rest.
Adapting to Chronic Illness
I see where I can fit in to the healthy lives of those around me. Sometimes I eek out a place in the kingdom of the well for a moment, an hour, or even half a day. Mostly I excel at equipping and decorating my room in the castle of the kingdom of the sick.
My creativity saves me from doldrums and despair. Writing, reading, and researching are a refuge when I can think well. In the last year, watercolor painting and colored pencil drawing emerged as saviors. My bed is an office and art studio.
Since I wrote three years ago, some things have improved. I am better at pacing myself. With the help of my care team, my regime of supplements and treatments provides a tad more relief. With careful measures I am able to travel a couple of times a year and attend a few larger social events, but always within limits. Mentally and emotionally I cope better with the pain and fatigue. I continue to court acceptance. A new relationship with hope slowly evolves.
What would I like you to know now about what it’s like to have ME/CFS?
The healthcare system has failed to care too many times. Doctors don’t know or understand this illness. In the ten years of being sick, only two doctors (out of dozens) believed I was sick, knew what this illness is, and had ideas for treating me. I’ve been told, “I can’t help you” too many times.
It’s important to keep caring.
I am fortunate to have a few alternative healthcare professionals that exhibit a generous amount of stamina caring for me. They refuse to give up. Their care helps me continue to seek relief and risk trying new treatments. Their commitment is the reason why I give up multiple days a month to have family drive me 3.5 hours for appointments.
This illness costs a lot of time, energy, and financial resources. Insurance doesn’t cover a large majority of the expenses. I am only able to work part-time. I’ve lost countless memories and experiences I won’t be able to recover. There are a lot of reasons to stop caring, but I continue.
Family, friends, clients, and students continue to care too, and that makes a world of difference. Thank you everyone who asks, listens, and shows concern. I know it’s not easy to hear the same story of pain and struggle over and over again.
My sincere gratitude for your stamina to keep caring.
I make meaning in this illness by seeing all the ways I receive ongoing care from others. This care makes it infinitely more natural for me to offer deep compassion to other people who are unwell, especially chronically so. My life has meaning as I stand in a circle of caring.
Systemic Change is Needed
I love that we provide care to each other in a grassroots and communal way and… we shouldn’t have to do this alone. Change needs to happen at a national and international level. We (both patients and caregivers) deserve the help of professionals and leaders. It is well beyond time that doctors, researchers, and legislators dedicate the attention and funding needed to treat and cure this debilitating disease.
I read from #MEAction that the number of people with ME/CFS has likely quadrupled as a result of the COVID pandemic. Millions of people with Long COVID now meet the criteria for ME/CFS. There are millions of us missing from our healthy lives. I long for our liberation.
To help make a difference, here are links to three of the best advocacy and research organizations the ME/CFS community has. There is information about lobbying, spreading the word, and donating. If you have care to give right now, I ask that you participate in some way in ME/CFS advocacy.
Solve M.E. – https://solvecfs.org/
#MEAction Network – https://www.meaction.net/
Open Medicine Foundation – https://www.omf.ngo/
To help closer to home, call or text a friend with a chronic illness to let them know you have the stamina to keep caring. If you have a chronic illness, remember that by caring for yourself you belong in the greater circle of care. We are in this together.
“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” ― Susan Sontag, Illness as Metaphor
Here are three excellent books I’ve read in the last couple of years that have helped me develop a deeper level of self-compassion while navigating through ME/CFS and chronic illness in general.
Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad
The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke
No Cure for Being Human (and Other Truths I Need to Hear) by Kate Bowler
(Photo above is of me, Stacey Couch, and my son at home resting on one of many sick days for us over the last winter.)
About Author, Stacey L. L. Couch
Stacey L. L. Couch is a Spiritual Teacher who specializes in shamanism, inter-spirituality, archetypes, and symbolism. She supports soul pioneers - those of you who are learning as you go along the spiritual path. She works with beginner and life-long spiritual seekers. Through working with Stacey, lost seekers find their way home and professional spiritual guides receive mentorship. Stacey empowers people with the ability to explore their purpose and calling. Wisdom found in story, mysticism, and nature provide guidance and healing in her work. She is the author of Gracious Wild: A Shamanic Journey with Hawks. She values mindfulness, wonder, and compassion in her daily spiritual practice. Learn More about Stacey.