ME/CFS Awareness. Stacey Couch standing and looking at her black Friesian Percheron horse named Isabeau.

A Call to Slow Down

Photo: Stacey Couch and her horse “Isabeau”. Photo credit: Estella O’Connell

Hiding Behind the Teaching

My career began centered around a memoir. My story opened up doors to spiritual insights. I stepped through those doors to share with others. Over time, my focus shifted from sharing to listening. I embraced the role of transparent messenger. To write down “I” has become uncomfortable again. 

Spiritual correctness, which is similar to political correctness, says to drop the ego. In life and work, I practice the importance of releasing the “I” and this helps. However, it also becomes a shield to vulnerability. Conscious releasing of the self became hiding. Spiritual correctness is when we take any spiritual teaching and get dogmatic. When say the annihilation of the “I” is the only way, we lose our way.

So here I am – lost and finding my way back to you. There is one story I have been hiding for seven years. They call it an invisible illness, so my work of staying undetected is easy. Family doctors can’t see it. Friends and family don’t know what’s going on. Researchers are just beginning to find scientific indicators of the disease.

I can’t tell you how many people have said to me, “Oh, isn’t that what doctors diagnose you with when they can’t figure out what’s going on?” As if my experience is something thrown in the discard basket. I’m with the leftovers right next to the unmatched sock in the lost and found. Maybe someday someone will get around to doing something with me. 

I have ME/CFS

I have ME/CFS. Not familiar with the name? Most people know it as Chronic Fatigue Syndrome. Syndrome means a “concurrence of symptoms,” which this disease has, but the chronic fatigue portion of the name hasn’t garnered much respect. “ME”  is the newer nomenclature and more telling of the severity of the disease. It is myalgic encephalomyelitis, which roughly means muscle pain (myalgia) with neurologic system inflammation (encephalo- (relating to the brain) myelitis (inflammation)). 

My aim is not to educate you about the disease. Let the researchers at Harvard, Cornell, Stanford, and Oxford University do that. I put links at the bottom of this article if you want to learn more. I am not happy about much about this disease, but I am glad for all the great minds solving this puzzle. My aim is to help raise awareness about its impact and prevalence. 

It may seem extreme to talk about my condition as suffering. There is a risk of appearing like I’m playing the victim. All I can say is, “This is serious. I’m not playing.” 

May 12th is International ME/CFS Awareness Day. I hope to contribute to awareness through sharing my story. 

Pain is My Companion

Not a day goes by that I don’t hurt. I used to be able to spend hours on my feet fixing fences or gathering firewood. I could walk around my pasture for hours playing with my horses. Hikes were easy. I could eat whatever was served. It felt good to exert myself and get my heart pumping. I slept like a log – every night. When I sat to meditate, it was quiet. I spent many hours a day writing and creating. I recorded videos, wrote blog posts and produced online classes. In my free time, I drew, gardened, and cooked. I was a vast vessel into which life poured and from which I poured life.

Then I got a common cold like I’d had dozens of times before, but I never got better. Weeks turned into months. Symptoms started to stack up. What was this ringing in my ears that wouldn’t cease? How come my throat is still sore? What’s the deal with all these stomach aches? Am I getting sick again? Where is my energy going? I seem to ache a lot. Why do I wake up in the middle of the night on fire? I can’t think straight. Something’s wrong.

Next came the many year’s search for reason why I was sick. I dug through my past – ten times. I cleared out all my interior closets and made amends. Addressing possible psychological and spiritual causes of the illness didn’t work. I took homeopathics and spent thousands of dollars on herbs and supplements. Neither traditional or alternative doctors or healers were able to help much.

My menu shrank – no yeast, no gluten, no corn, no sulfites, and on and on. My family grew tired of not being able to share meals with me. I gave up alcohol and caffeine years ago.

It Gets Worse

I am not writing to tell you how I healed myself, so I can lead the way to wellness. Hang in there. It gets worse.

Today, I can’t go up a flight of stairs without stopping once or twice to catch my breath. If I am lucky, I might sleep through the night once a month. I can’t ride my horse for ten minutes once a week without getting wiped out. I have to sit down to recover after changing my son’s diaper. The creative projects that used to take me a few hours, I now patch together over the course of weeks. The pain is debilitating and relentless. The sheer exhaustion is a close second. 

This is not a cry for advise or help. I don’t need you to fix my problem. This is a call to awareness. Millions of people are sick all over the world with ME/CFS. There is no proven treatment to lessen symptoms. No cure is in sight. I read the other day that only six percent of people go into remission. Those odds suck. 

Research into ME/CFS is severely underfunded. Sick people don’t receive nearly enough support. Some people are bedridden and others are housebound. Many are not able to work. This is one of the few diseases that gets worse with exercise. Both physical and mental exertion take a ridiculous toll on the body. I have had to limit my office hours and greatly reduce activities. I am operating at around forty to sixty percent of my former capacity.

A Blessed Life

Working in the spirituality field is a blessing for me in this illness. I have so many touch points of grace to get me through the day. I live an inspired life. This work allows me a freedom of creativity unmatched in any other time in my life. My interactions are filled with radiant people in sacred practice. It is stunning really, to be in the circle of such love. I love what I do. 

This work and this illness have come together to reveal something fundamental about the human experience. Everyone is suffering in ways big and small. You could have told me that before all this began and I would have believed you. However, there is a huge difference between knowing and living a thing.

Being on the receiving end of invisible pain, I know what it feels like to suffer in private. People expect me to simply pick up my child and carry him across the room, and I can’t without crashing for hours. Family members think I will get my own dinner until I say I can’t bear another moment on my feet. Clients expect I’ll be able to get them on my schedule when they need. Friends assume I can sit and talk for hours. 

It’s not because people don’t care. It’s because they can’t see. 

In every conversation, I remember that the person I am talking to could be suffering and I don’t know. This goes for grocery clerks as well as friends and clients at the same time as postal workers. My weary heart sees them all.

There’s No Reason For It

Working in the spirituality field is a curse for me in this illness. There is a subversive myth that spiritual guides have life pretty well sorted out. The story goes that a spiritual teacher spends years working on herself to get better before she goes to minister to others. This story of perfectionism has to go. It is holding our teachers and ourselves to an unrealistic expectation. It equates physical health with spiritual health. 

Some of the most spiritually well people I know are gravely ill. There are emotional, mental and spiritual roots to physical illnesses, but not always. There doesn’t have to be an untended trauma or deep-seated anger to trigger disease. Depravity of spirit absolutely leads to a physical health crisis, but not every time. Sure, your family history, past lives, and karmic debt can make you sick. These broken states can cause a body to break down, but we can’t always find a pathology.

In this field, seekers try to find a good reason for being sick. I don’t think there’s any good reason for suffering. It’s not reasonable that people should hurt.

A Heart Too Soft to Try

For years, I’ve allowed my illness to hide because I feared judgement. I was afraid that people would automatically assume I was unconscious (a curse in this business for sure). There is a good chance that some of you reading this will blame me for being sick. You may decide I haven’t truly done my work. You could believe that I won’t face my own shadow or that I feed off of the pity. 

From your perspective, it could be that I haven’t tried everything. You may think you have the answer. Keep going. I’m sure there’s twenty thousand ways to guess how I created this, but if you truly understand the nature of pain, your heart is too soft to try.

I write to those of you whose hearts are broken open to suffering. I ask not for pity but for compassion. Not for me but for others. Sure pray for me. I’ve learned not to turn away a good prayer, but while you’re at it, pray for the millions of people around the world with this disease.

A Call to Slow Down

It’s time to wake up to how much we, as a collective, push ourselves. I see a parallel between the energy crisis in patients like me and the energy crisis on the planet. We are running out of resources like oil, food, and water. Mothers are at the brink of exhaustion. Service staff have dark circles under their eyes. Some of you are working hard to get by and others of you are working hard on yourselves. How many times do you say you’re running on fumes? Our planet is fatigued and so are we.

Symbolically, I see people with ME/CFS as the canaries in the coal mine. At the leading edge of the climate crisis, we are heating up. Inflammation of the nervous system is big in this disease. Patients get brain fog and can’t think straight. Humanity overwhelms their inner circuitry with too much internet data and is over stimulated by screens. ME/CFS sufferers have to wear ear plugs and eye masks to sleep. Humanity is attacking the planet with toxins and bulldozers. People with ME/CFS have an immune system on high alert, trying to clear out an invisible intruder.

Maybe I will write a future post about the archetypes involved in ME/CFS. It’s a side project of mine in slow development. My point here is this – what we do to the planet and to ourselves, we do to the whole. Your furious pace has consequences. Hear the call to slow down. It helps more than you know.

One Purpose of ME/CFS

I believe that bringing a slow pace is part of the purpose of patients of ME/CFS. We are not doing it by choice, but we’re doing it regardless. We provide a balancing force to the rigorous busyness of the world. Our forced sluggishness brings back what is essential. The extreme ascetic lifestyle that comes with ME/CFS is purifying. I no longer identify with what I eat or how much I produce. I don’t like that I have to pace myself so strictly and say “no” to so many things. However, I also know my lower consumption is reducing my impact on the earth. 

There is a lot of talk in the spiritual community about getting “back to the earth,” but we can’t do this at breakneck speed. We have to pause, rest and listen. You may have a friend with ME/CFS that can teach you a thing or two about ease. She’s come by this practice the hard way, but I bet she knows it better than anyone. People with ME/CFS often think they don’t have anything to offer the world because they are stuck at home unable to produce. I disagree.

There is deep meaning in the forced call to slow down for ME/CFS patients. The world can learn a lot from the wisdom of these stillness practitioners. These gurus of pacing are masters of energy and body awareness. There is immense value to the act of simply being. The ME/CFS community knows this better than anyone. For being still means finding some relief.

The ME/CFS community is bringing back a much needed way of life, the gentle way of non-doing. “Being with” is the feminine way. It’s no accident that women disproportionately get this disease. The more of us with this illness that can come to embrace the intrinsic value of being, the more we contribute to the healing of the whole. Let’s pray that this healing becomes ours too.

Consider Donating to ME/CFS Research

These organizations are doing worldwide, in-depth research into diagnosis, treatment and cures. They also help raise ME/CFS awareness.

Open Medicine Foundation: https://www.omf.ngo/

Solve ME/CFS Initiative: https://solvecfs.org/donate/

#MEAction Network: https://www.meaction.net/

Links to ME/CFS Resources

https://www.omf.ngo/what-is-mecfs/

https://www.omf.ngo/symptoms-mecfs/

https://solvecfs.org/about-the-disease/

https://solvecfs.org/5-myths-of-me-cfs/

https://ammes.org/what-is-mecfs/

http://cfsknowledgecenter.com/how-it-affects-us/

https://youtu.be/RC9TjgE_PlU

https://youtu.be/62HI-Zj5dRk

 
 

Stacey Couch

About Author, Stacey L. L. Couch

Stacey Couch is a Spiritual Advisor who supports creative seekers learning as they go on the spiritual path. She serves beginner and life-long students of the soul. Her compassionate and collaborative approach honors the humanity and value of each person. Wisdom found in story, mysticism, and nature provide guidance and healing in her work. Through meeting with Stacey, lost souls find refuge. Connection to the Divine is realized. Belonging comes. She is the author of Gracious Wild: A Shamanic Journey with Hawks. Learn More about working with Stacey
21 replies
  1. Sandy De Master
    Sandy De Master says:

    Thank you for sharing your story. I know it can help a lot of individuals who suffer from the same disease. Take care and be well.

    Reply
  2. Lisa
    Lisa says:

    Of the people I know who suffer from autoimmune diseases, they are highly sensitive people. Sensitive to energies, animals, other people, etc. Most limit the amount of time exposing themselves. Like you say, many are at home, quietly dealing with the pain that comes. I have one friend I have learned so much from. She is an artist. A quiet artist, spending her time, as energy allows, pouring herself into beautiful, meticulous drawings of a joyful fairy world. From this I learn to care for myself, be expressive, listen, live life slowly with attention to each moment and hold compassion for self as well as all beings. I see my friend as someone here on this time line as a quiet teacher and I am honored to be her friend.

    Reply
  3. Melissa Dillon
    Melissa Dillon says:

    Thank you so much for sharing this. I appreciate and honor the courage that it took to be self-revealing and vulnerable in sharing how this has affected you to invite all of us to greater awareness. I appreciate how you also use it as grist for your spiritual mill, finding ways to incorporate lessons and live the “contract.” Blessings.

    Reply
  4. Susan
    Susan says:

    Thank you for raising our awareness of this illness and of our need to be more compassionate toward our fellow travelers on this journey. Slowing down seems to be a theme for all of our lives these days and is good advice. Thank you for your insights and reminders. You are a light in these challenging times.

    Reply
  5. Jaydipa
    Jaydipa says:

    My heartfelt thanks to you for sharing your story, it’s given me the courage and a fresh new perspective of focus on my ongoing health issues.

    Reply
  6. Karen
    Karen says:

    Thank you Stacey for sharing, very well said! I too have CFS and I went from being an energizer bunny to slow and steady. It is hard for others to understand and yes I have tried many many things and I will never give up hope. We are the canaries in the coal mine. The gift is we come back to ourselves in stillness and return our gifts of compassion to others…caring, giving , thoughtful, kindness and being with others in slowing down and asking the deeper questions.
    Thank you!

    Reply
  7. Nancy Brennan
    Nancy Brennan says:

    Wow Stacey!! When I was a home health nurse (many years ago), I was shocked at how many people suffered with pain on a daily basis. They would tell me they were used to it!!! The doctors would tell them they couldn’t do anything else for them. How could that be?? As the years went by, I noticed that pain had a “take no prisoners” approach…..in the form of physical, mental, emotional, AND spiritual suffering. It’s daunting to watch! It’s also very discouraging. Stacey you are sooo right…. there are so many people out there suffering right along side you, and they too look like the picture of health. Thank you for your courage and clarity in sharing this eye-opening story. I never heard of this dis-ease. It really sucks to be sick!! I hate it for myself, and I hate it for everyone else. I will absolutely keep you in my prayers and donate to your causes….but please let us know if there is anything we can do on a collective level. Your light shines so bright, and you are such a blessing to so many. Thank you so much for everything Stacey!!

    Reply
  8. sabine
    sabine says:

    Beautiful Stacey,
    even before I started reading your story I was struck by this overwhelming feeling of sadness. That said, at the same time I felt this sense of support, someone standing beside me, my back being hold.
    Thank you for sharing so generously. You such an amazing creator of a space, that invites me to step into a world, that seems new and so familiar at the same time.
    With deep gratitude
    Sabine

    Reply
  9. Sharon Siess
    Sharon Siess says:

    What courage you have Stacey to write about this. My heart is with you as you navigate this time in your life. You are a Brilliant Light in this world! It is very important to break the stigma attached to this disease! Because people can’t see it they tend to not believe it. That must leave and Deep Compassion must come in for all those who suffer. You have been a constant source of inspiration to me! Thank you will never be enough for all of the generosity you share.
    Blessing to you always????????

    Reply
  10. Bob LeCour
    Bob LeCour says:

    This is a work of both love and courage. You have a lot of courage to open yourself up and be more vulnerable. Also, it takes real love of others to share such a personal experience. I am experiencing a similar pathway now. Adjusting to the new limits and the pain are real teachers ‘! You point regarding not feeling who we really are in the start of your message is good for thought. Thanks! You are loved

    Reply
  11. Ursula
    Ursula says:

    What an act of great strength to write about your current life. It will help so many people out there. I hope you have a great support to care for you and your family through this chapter. Sending out waves of loving energy your way.

    Reply
  12. Stacey Couch
    Stacey Couch says:

    Thank you everyone for all of your kindness and for taking the time to write. I am touched by what each of you shared. I’m forever grateful for the web of compassion that connects us all. Blessings to you, Stacey

    Reply
  13. Mary
    Mary says:

    Thank you for sharing your journey. I do not suffer from ME/CFS, but have a dear friend who has for many years. I made the conscious decision to drastically slow my life down. I am 66 and in good health, but realize how much unnecessary stress we put on ourselves, Mother Earth, and the Universe with our rushing, overworking craziness. I’m relaxing into my natural state in tune with nature’s rhythms. And today I needed your words of encouragement.
    Thank you and bless you.

    Reply
  14. Kim Karn
    Kim Karn says:

    Thank you for sharing. I have RA and this resonates with me profoundly. The pre-pandemic speed was unsustainable. I hope that humanity will be able to slow down, have more awareness of the suffering of others and heal our addictions to energy, consumption and hyper-productivity.

    In beauty,

    Kim

    Reply
  15. Reb
    Reb says:

    Dearest Stacy,
    You are not alone. I have chronic neurotoxicity and multiple chemical sensitivity. This includes brain injury, memory loss, chronic fatigue/pain and a neurological mystery wheel every day full of surprises. I’m young. When I tell people what it means or how I really feel – I watch as they shatter. I feel so guilty. I try never to talk about me. Now I feel guilty because of the “fake front”. I grieve for the lost me. Silently. There is no one to talk to who understands. Where I live – not even medically.
    I also fight daily with the “am I playing the victim?” EVEN as my eyes are literally deteriorating on a daily basis and I cannot read or focus. EVEN as I feel so emotionally raw I could burst. EVEN as I hurt all over just holding my sore ribs.
    Because I was hurt at work – I feel guilty reading your post. I know I will be attacked if I told someone – hey look, I’m not alone. It’s hard. The legal people are so careless. I feel guilty now asking for help, talking to people to understand or reading… I feel guilty for doing things and not doing them because I am attacked when I talk to people. I feel it’s important to know that the critics are the ones outside the arena. There is a quote I forget how it goes.
    Telling myself, “NO! This is real.” Doesn’t help or change. I always assumed it’s because of legal things. It’s ok to talk – it’s important to share (when you are ready / able).
    It hurts so much. I feel that is ok too. It’s humbling.
    I am sending you a huge hug. I love your work, your farm and horses. I sent you an email a while back – when you are ready / able please reply. I’d love to hear from you.
    From Reb

    Reply
  16. Elizabeth Hude
    Elizabeth Hude says:

    Stacey,

    I just sent a request for spiritual direction and read this after. No worries if I don’t hear from you! I’m calmed by your reading. You have articulated something I have been sensing for years regarding the earth and the need to be still in a world that tells us we need to achieve more. I don’t have ME/CFS but have been chasing after some explanations for things of my own. I will look at the info you have provided.

    Thank you for sharing this and your honesty. Elizabeth Hude

    Reply
  17. Meg Annutto
    Meg Annutto says:

    Dear Stacey,

    Thank you, for this honest post. I have suffered with CFS, chronic muscle and joint pain and brain fog since 2001. I would spend all day doing massages to relieve other people’s pain only to come home unable to move. I would have to have a day off in between just to sleep the next day and rest. I too have searched for answers, tried the supplements, etc. Although I can not know it exactly how you feel on a day to day basis, I can relate on some level with you. I am 59 and life changed for me too. I wish I had this post and someone like you in my life. I think this disease has made me much more compassionate and less to judge others who illnesses we can not obviously see from the outside.
    I wish you wellness and grace sweet warrior.
    Meg

    Reply
  18. Finding Accessibility • Wild Gratitude
    Finding Accessibility • Wild Gratitude says:

    […] Some of you may be wondering about why I identify as disabled with and the details of that. I am glad to help raise awareness about that too. My diagnosis is ME/CFS. It is a neuro-immune disease that affects millions of people around the world. I wrote about it last year and you can read that article here. […]

    Reply

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