04 Oct Chronic Fatigue Syndrome and Grief
Looking back at Chronic Fatigue Syndrome
It is hard to describe the experience of having CFS after having recovered. Partly because having it was monotonous, relentless and difficult. Like many challenging experiences, our brains store these memories in a different way to the happy stories. For me, as with many others CFS brings poor memory and brain function as part of the symptom picture too. I chatted with JA, who has also recovered about how it was for them, and include some of their quotes in this article.
“Every bone and joint in my body hurt, and I didn’t have the energy to get up and go to the loo.” JA
What I expected but did not receive
I lost my thirties to CFS, at the time I expected to be building a career, and having children. This is an example of Francis Weller’s second Gate of Grief – ‘what I expected but did not receive’. Instead, I was lying motionless on a sofa, sometimes listening to classic audio books from the library, and staring at the blanket over my legs. I didn’t have the concentration to read. Music felt overpowering as if I had no skin. Chatting to others was exhausting.
Living in slow motion
My enduring memory of the experience was of watching the colours in the blanket. The light and shade in the room moved around like a sun dial, illuminating different colours and textures in the room. It was as though I was living in slow motion, my view of the world shrunk to the things I could see from the sofa.
“When I had CFS/ME, everything I thought was important got stripped away, so you get to find out what’s absolutely necessary.” JA
The symptoms of Chronic Fatigue Syndrome
Fatigue is usually the predominant symptom of Chronic Fatigue Syndrome. It is not the kind of tiredness that comes at the end of a busy day, or after exertion. It is a deep, incapacitating, immobilising sensation where limbs feel as heavy as lead, and any activity is a huge effort. If you have experienced CFS, you will probably also have experienced well-meaning friends saying, “I feel really tired too.” It really isn’t every day ordinary tiredness.
These are the main symptoms that may be present in this debilitating chronic condition, although others may be part of the picture too. A range of symptoms must persist for over six months, and exclude other illnesses to secure a diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME).
- Extreme tiredness, especially after physical or mental activity
- Brain fog, and memory problems
- Dizziness, sore throat, headaches
- Muscle weakness (and for some muscle and joint pain or fibromyalgia)
- Disrupted sleep patterns, and waking tired after sleeping
My experience of Chronic Fatigue Syndrome
I felt ancient. I noticed octogenarians who were moving at my new pace; invisible and over-taken on the pavement by the able-bodied young. Any energy I had was used up doing essential tasks and trying to manage my limited energy.
“I tried everything, which drained my resources financially and energetically.” JA
I was lucky. I had a supportive partner. We had enough resources to survive. I could put my attention on trying to understand Chronic Fatigue Syndrome and work out how to improve my health. In those days there wasn’t much support available. CFS was also stigmatised by many who saw sufferers as malingerers or wrote it off as depression. My experience was relatively mild for most of the years I was affected. I had several periods where I was sofa-ridden for a few months at a time, and gradually recovered with brief relapses. Some people are very severely affected and need personal care.
An alchemical transformation
I am not a fan of ungrounded positive thinking, and blaming people for their choices, for creating their Chronic Fatigue Syndrome. It was, however, a learning process for me. Looking back at my eight years of debilitating symptoms, I see it as an alchemical process. I was tempered in the crucible of Chronic Fatigue, which transformed me into the person I have become. It’s hard to quantify the changes in me; I felt like I had been on a meditation retreat for eight years. It wasn’t easy. It involved a rigorous examination of every aspect of my life, changes in how I thought, felt, behaved and related.
“I felt like a reverse sleeping beauty and woke up 9 years later, 9 years older.” JA
Chronic Fatigue Syndrome and grief
From my subjective vantage point I want to share some of my observations about my experience of Chronic Fatigue Syndrome, and recovery from it. Since becoming well, I have become a Grief Tender. The more I learn about grief and the grieving process, the more I see some external parallels between grief and burnout/CFS. Although the experience of CFS is predominantly physical collapse, and grief is more emotional although there are impacts on the body too.
With both Chronic Fatigue Syndrome and complicated or prolonged grief, there are some commonalities before, during and after the onset of symptoms or the impact of grief. These include:
- Pre-existing loading that underlies the onset of CFS/grief
- During the experience of CFS/grief the symptoms are broad – affecting the whole mind/body system
- The context and life situation around the person experiencing CFS/grief are important factors
- Secondary losses that happen as a result of or after the onset of CFC/grief
- Routes to recovery, moving through CFS/grief are life-changing experiences
- Recovery will involve growing a new life as part of our unique journey around, through and beyond CFS/grief
The conditions or loading preceding CFS/grief
My understanding and experience of developing CFS was that it was preceded by a ‘loading’ of different physical, emotional, mental and spiritual causes. My mind/body system was trying to deal with more than it could handle.
In my case this included some developmental trauma from unresolved childhood issues, becoming a new step-parent of a very active child, moving house, getting married, working erratically as a freelancer (feast or famine), some digestive issues, poor blood sugar management, being an only child of a parent with a mental health diagnosis, and then a series of infections on top – chickenpox, Hepatitis A, then flu. Although it felt like a normal but chaotic set of circumstances, my system was overloaded and suddenly crashed.
Emotional triggers causing physiological effects
There were many factors in the mix that it took me years to unravel. Adrenal burnout was certainly part of my physiological cocktail. My system was simultaneously on emergency alert, (adrenalin rushes, muscles tensed unable to switch off, digestion suspended), and with an emergency braking mechanism also on, causing more of a freeze response. With the help of a Mickel therapist, (thank you Jane Orton) I began the detective work of seeing my emotional triggers that were causing physiological effects. And my physical symptoms were very real. I also needed to understand nervous system states, and learn tools for self and co-regulation.
“The worst thing about having CFS/ME is not knowing how long it is going to last.” JA
Secondary losses caused by illness/grief
As in someone’s personal grief landscape, the circumstances in the build-up, the particular symptom picture during, and the context it happens in are all relevant. The consequences or secondary losses will also be part of the unique picture of someone’s life. The inner and outer resources, as well as the support systems available will also impact someone’s ability to recover, and at what pace. People have the freedom to make their own choices, but they are also subject to their particular environment, and luck.
“There are very real mental health issues of having CFS, of being in this for so long.” JA
In Grief Tending workshops, I often remind people of the many different influences on their circumstances – which may include culture, faith, class, gendered socialisation, health, neurological wiring, sexuality, trauma history, wealth, family or lack of it, and ancestral histories to name a few. The impacts that land in these terrains create a unique set of circumstances in each of us.
Processing Grief
Processing grief may be an important part of a recovery plan from CFS. There are often pre-existing grief loads from the time before CFS. Then there is always the grief of what has been lost, missed, longed for, and the pain carried since having CFS. As well as the lost hopes and dreams of our imagined futures, there are often lost opportunities, lost friendships, lost identities, reduced resources, and lost time spent with our loved ones.
There are different kinds of chronic energy collapse including Long Covid, Autistic burnout, work burnout, Post Viral Syndrome, and Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis. There can be varying symptoms, durations and overlapping syndromes between them. There may be one apparent cause, although that may just be ‘the straw that broke the camel’s back’. I’m not a medical professional and there are still many competing theories and perspectives on both cause and cure. Grief in its widest sense may be one of many contributing factors. And where there is chronic illness, which precipitates other losses, grief is usually part of the whole picture. All the things that have been lost as a result of any chronic condition, as well as anticipatory grief/anxiety for what is still to come.
“You don’t understand what it’s like unless you’ve been through it.” JA
Grieving Together
Chronic Fatigue Syndrome is a lonely journey. Finding spaces where it is possible to be part of a group experience, while taking care of our needs can be problematic. Finding connection while navigating chronic illness is often beyond our capacity.
Many people who are sick approach our Grief Tending workshops with trepidation, but find them a useful place to connect with others who are going through life-changing circumstances and learning how to be with life’s desperate times and conditions that are so often isolating.
Sarah Pletts is a Grief Tender and Artist who offers workshops in London and online, sharing rituals where grief on all themes is welcome. For more information about Grief Tending events see here.
See article on ‘Recovery from Chronic Fatigue Syndrome’
Support Links:
If you are experiencing the symptoms of CFS/ME, consult your doctor to register the onset of symptoms and check for any other possible causes.
NHS Chronic Fatigue Symptoms
ME Association
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