Chrillog #3: Avdeep’s Chronic Fatigue Story (“I Feel Better Than I Have in 15 Years”)

This is Avdeep’s chronic fatigue story, a chronic illness also known as CFS, for chronic fatigue syndrome, myalgic encephalomyelitis or “ME”, ME/CFS, and CFIDS (chronic fatigue and immune dysfunction syndrome). I call her story a #Chrillog, which stands for “chronic illness weblogs,” in which we look at our journeys through a nervous system and trauma lens. Avdeep lives in Ontario, Canada.

Introduction

Hello!  My name is Avdeep and I live in a town called Brampton, about 30 minutes west of Toronto, Canada.  I immigrated to Canada at the age of 15 from Nairobi, Kenya – where both my parents and I were born.  My ancestors are from India.

I’m a married mom of two wonderful boys ages 16 and 13.  They are truly what drove me to heal many years ago.  My husband, a handful of close, like-minded friends, a number of amazing health care professionals, healers and even a medical doctor have been a wonderful support through this journey.  I love my tai chi/qigong and meditation practice – something I’ve been doing pretty much daily for 8 years now.  I love nature and quiet time too!

Medical doctors have told me that I have Post-traumatic Stress Disorder, Anxiety/Depression and Chronic Fatigue. Naturopathic doctors have named it adrenal fatigue.  I also had a concussion in April 2018.  My mother suffers from rheumatoid arthritis and I suspect undiagnosed PTSD/anxiety/depression too.

Professionally, I graduated as an Occupational Therapist in 2003 and worked in this profession in hospital and community settings mostly doing physical rehabilitation until 2016. Currently, I am a Somatic Experiencing® (SE) Practitioner in Training. I run an SE-based group program for those with a history of sexual abuse, a group for “Returning Home to Your Body,” and do 1 on 1 sessions to help clients re-negotiate the trauma of childhood sexual abuse, developmental/early trauma and chronic health conditions including chronic pain.

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My Health Symptoms and Trauma

For me, undiagnosable symptoms such as fatigue, tingling in my left hand and foot, cognitive and perceptual difficulties, left sided headaches and foggy brain started in 2005 – the day after my first son’s birth. Over the next few years, medical doctors, specialists and head MRIs told me that nothing was wrong with me.  I’d come to believe it was simply the exhaustion of working full time and being a new mom.  Later I was to understand they stemmed from unhealed trauma and a dysregulated nervous system. 

A decade later a family member said to me, “you just need to exercise, it’s all in your head”.  I was hurt, yet at the same time something struck me deeply and I knew in my gut that this wasn’t all in my head.  It had to do with more than just that.  I was determined to figure it out.

Trauma Resources That Showed Up

Various resources showed up for me – books such as When the Body Says No by Dr. Gabor Mate, The Body Keeps the Score by Dr. Bessel van der Kolk, books by Dr. Peter Levine and SE for trauma re-negotiation. I learnt that chronic stress and trauma, especially early in life, can lead to a dysregulated nervous system and adult onset chronic health conditions.  Peter Levine says,

Trauma is not in the event itself, rather trauma resides in the nervous system.

Moreover, trauma does not have to be “big” things, but rather can be an accumulation of many “smaller” stressful events. 

SE teaches how the Vagus nerve, the tenth cranial nerve, is designed for human connection – and it is one of the things that is impacted as a result of trauma, leading to feelings of loneliness.  I learnt that stimuli that most strongly activate the Hypothalamus-Pituitary-Adrenal (HPA) axis are psychological factors such as uncertainty, conflict, lack of control, information and love! In my HeartMath Coaching program, research shows that emotions have the biggest unnecessary drain on our physiology. For nearly a decade I was experiencing various, unusual and diagnosable symptoms.  My body was speaking to me but I wasn’t listening at the time.  As Dr. Gabor Mates says:

When you shut down emotion, you’re also affecting your immune system, your nervous system. So the repression of emotion, which is a survival strategy, then becomes a source of physiological illness later on”.

Understanding Polyvagal Theory (PVT) was also key in understanding how trauma had impacted my nervous system.  Being unable to fight or flee from threats, I had lived most of my life in a “freeze” state in my nervous system and that eventually led to symptoms and diagnoses. 

My Healing Trauma Journey

It was in December 2012 when I started working with a biofeedback specialist, and started my tai chi and meditation practice that symptoms started to lift within just 2 months!  2013 was the best year I had in a long time; feeling more joyful, present, calmer, mentally clearer, more energy and more connected. 

In 2014 memories of childhood sexual abuse started to surface and a significant worsening of the fatigue occurred in 2015/2016.  I realized I needed to get more professional support and this included group programs, talk therapies and eventually Somatic Experiencing sessions in December 2018.

In 2016 I was feeling my worst health wise – dealing with intense fatigue, difficulty standing for more than 10 minutes, pain in my upper legs and arms, physical slowness, a foggy brain to name a few symptoms.  It had been nearly a decade of feeling an overall disconnection from my self and others.  I had been living in a “freeze” (dorsal vagus state) in my nervous system for most of my life. 

Herbal medicine in the fall of 2017 was also profoundly helpful.  Two months on herbal tinctures and even more symptoms lifted –leg and arm pain, the mental fogginess and physical slowness, and difficulty with standing/walking lifted!   I cried a lot initially with those tinctures and I truly believe I was shedding repressed emotions from decades prior.  It was a profound gift, to start to feel alive again.

In April 2018 I had a concussion as a result of a fall, and even though it was a very difficult time – it also allowed healing to a deeper level.  Various approaches including reiki, osteopathy, chiropractic and acupuncture were extremely helpful to alleviate symptoms that year.  But it was SE training in March 2019 that lifted symptoms in the most profound ways – a year’s worth of post concussion symptoms (headaches, light/sound sensitivity, anxiety, social anxiety) lifted.  I felt like a new woman, I felt like I had come back home.   Physical energy improved and has continued to improve since then. 

It was the safety, container, nervous system co-regulation in SE training/therapy and putting my own needs first that allowed this profound shift to occur. SE work has really supported my nervous system to heal. Rather than living in a chronic “freeze” state, I have moved into fight/flight – discharging pent up energy in the form of emotions, especially anger.  Expressing words or bodily movements that had not been allowed to complete/happen especially during traumatic/stressful experiences.  I now experience more aliveness and connection with myself and others – this a state in the nervous system known as a ventral vagus state.  

In the fall of 2020, I took Peter Levine’s Chronic Pain and Syndromes Master Class.  Interestingly, I learnt in SE Syndromes training that boundary violations are one of the root causes of health conditions such as mine (a Syndrome).  Experiencing boundaries in an embodied way and acting on them has also created a huge positive shift in my health symptoms. 

In 2020, I realized that my mother was a narcissist with her own unhealed trauma. She also had mental health issues very early in my childhood, leading to developmental trauma and boundary violations for me. I had spent my entire life trying to please her, to get her love and attention – which often was very inconsistent.  I lived a life of walking on eggshells around her.  It was utterly exhausting to do this. It is no wonder I’ve experienced Chronic Fatigue since the birth of my own son. 

I now know there is a connection between our relationship, early developmental trauma and later onset Chronic Fatigue symptoms. It was shocking in 2020 to connect the dots even more and understand that being invalidated, dismissed, ignored, and minimized by her were exactly those psychological stressors that Dr. Mate speaks of that cause stress on the HPA axis.  Layer on top of that other traumatic events that were creating stress on my system (see below for summary).

Adverse Events That May Have Impacted My Health

• Peri and prenatal trauma: These experiences have all been “felt sense experiences” in SE training/sessions, e.g. when watching the demo of SE with baby Jack with Peter Levine and someone talking about the umbilical cord in utero etc, I completely disassociate.  I’ve had experiences of my birth too in SE sessions where I felt a cord around my neck, and where I also disconnected from my mother once I was born.
• My ACE score is 4.
• A narcissistic, mentally ill mother, with unhealed trauma.
• Lack of support, emotionally especially, from my mother from birth; physical and mental abuse by her.
• Childhood sexual abuse
• Father that was absent due to travel for work.
• Very strict/controlling school system (in Kenya, to age 15)
• Intergenerational trauma including from patriarchy, colonialism, immigration and racism
• Immigration at age 15, completely different pace of life in Canada versus Kenya
• Bullying and racism in high school in Canada
• Cultural pressures and conditioning (creates a sense of lack of control and choice)

• The birth of my first son was traumatic, including a lack of the right support. My Maternal Serum Screen was positive for Spina Bifida (for him) at 11 weeks gestation, creating a very stressful time, just to learn 3 weeks later it was a false positive.  My water broke 10 days prior to his due date and even though that’s not considered “early”, for me it came as a shock.  The labour/birth period was 17 hours long – there was only 1 nurse present during labour and she seemed unsure how to support me to progress.  I had hoped to not get an epidural but did end up getting one and needing it.  It is just the past year that sensation in my legs has been returning (I wasn’t even aware prior that it was missing!).  I truly feel this lack of lower body sensation started at his birth and with that epidural.  I pushed for 2 hours and once my son came out he was limp, not crying and was taken to the paediatric intensive care unit for the first 3 hours of his life.  I don’t even recall holding him right at his birth.  I had an episiotomy that was poorly done, resulting in pain and making it difficult to walk upright for a least a week postpartum.  With my second son while in hospital I had nursing support and checks every 2 hours even overnight, however for my first I barely recall 1 or 2 nursing checks overnight.  
• Personal health issues also with a lack of support, validation and acknowledgement.
• Inability to work.
• Concussion
• Vicarious trauma from working as an Occupational Therapist and seeing/hearing of patients/clients traumatic experiences e.g. car accidents, surgeries, hospitalization, medical procedures and conditions etc.

Adversity in My Health Care

I also experienced adversity in my health care, such as from having a medical doctor that did not support me in my return to work in 2016 (and in fact discharged me from her care in the middle of my return to work; likely because I declined to follow her treatment recommendation to take medication).

This also happened in that my workplace/hospital did not support a modified/gradual return to work. 

I feel the above is important to highlight because so many health care workers experience this in their workplace, which only traumatizes them further. And it’s happening now with covid here in Canada. Some have no paid sick leave, so health care workers are going to work sick because they need the income, which only spreads covid more.

In hindsight, these experiences with medical practitioners and my work were a “re-enactment” (if that’s the right word) of the lack of support in childhood. Every time I’d have to go see my MD in early 2016, I would end up with worsening of fatigue for a few days after.  She reminded me of my mother.  My workplace reminded me of both her and the person who sexually abused me. I felt lack of control, lack of support, unheard by them etc. 

Triggers That Flare Symptoms

• Often it is in relationships, where I feel or perceive I’m not being heard or understood; or that I am being judged.
• Being in contact with my mother.
• Watching certain TV/movies especially if about boundary violations, racism etc.
• Sometimes being around children that are around the ages when I experienced abuse
• Being watched by others. 
• Feeling a lack of control or being trapped (even if perceived)
• Suppressing emotions

A Recap of What Helped

There have been so many things that have helped to heal from trauma. These include: biofeedback, acupuncture, herbal medicine, reiki/energy healing, osteopathy, massage, chiropractic work, tai chi/meditation, nature, eating healthier, social supports, healthier boundaries including no contact with my mother for periods of time, asking for what I need, and following my bodies’ natural rhythms for rest. 

A common theme amidst all my practitioners is that they were deeply present, validating and non-judgmental.  Personally, being a lot more nurturing and kinder to myself has been immensely important too.  The friends and family who have genuinely been there for me the past several years have also been an immense part of the healing journey.  Interestingly, the slowing down and quiet of COVID-19 has also supported my health! 

Professionally, since 2013 I was very drawn to healing modalities that I thought I was learning for my own clients but in hindsight they were all initially for me. These included reiki, Mindfulness Stress Reduction Program, ThetaHealing, Neurolinguistic Programming/hypnosis, HeartMath coaching and of course now Somatic Experiencing®.

Here Today

Today, I am 47 years old and grateful to feel better than I have in 15 years.  I do still sometimes get headaches, fatigue and other symptoms if I don’t listen to my body, am triggered or if I suppress emotions.  However, I am much more aware of it and thus catch it sooner.  I feel alive, more present and much more connected to the AUTHENTIC me, which is the best feeling ever!!! 

I have learnt to really listen to my body.  I use SE and tai chi/meditation practices daily.  I ask for help from others, feel safer with others and can be more vulnerable.  I have learnt to access flow, rest, and nurturing, gentleness and also our/natures’ natural cycles.

I currently work part-time and virtually as an SE™ Practitioner in Training offering one on one sessions and group programs.  I continue to nurture my beautiful family, and myself and find joy in life.

Metaphor

A turtle and a tiger have been reflective of my healing.  A turtle because I really needed to slow down to heal especially at the nervous system level and trust that everything would still fall into place.  A turtle too, because I really had to go at a slow pace in facing childhood memories and emotions.  A tiger because I know I have a similar strength, courage and fierceness. 

Contact Me

If my Chrillog has inspired hope or a curiosity in you, feel free to reach out via my website www.avdeepbahra.com or via Instagram @avdeep.bahra!

Thank you for taking the time to read – I truly hope it brings deeper awareness and opportunities for healing for you too!

Veronique’s Commentary

Avdeep has shared many insights about the role of adversity in her chronic fatigue story. I highlight key themes below that are common to all kinds of chronic illnesses.

1. Avdeep’s chronic fatigue story highlights just how much resilience our bodies can have given that she did not get sick right away, even after severe trauma such as childhood sexual abuse and racism across multiple generations.
2. The body’s ability to repress trauma is common. It is a protective function.
3. Avdeep’s chronic fatigue story is consistent with findings that risk is not from a single adverse event but from cumulative effects of multiple events over time. This includes how even health professionals we go to for help can contribute further to our survival responses, trauma and symptoms, as well as to challenges we may face when trying to return to work and other aspects of our lives that we so crave to regain.
4. Avdeep’s awareness of adversity in babyhood stems from body-based experiences rather than a known history. This tends to be trustworthy information and is derived from imprints stored in our bodies and nervous systems at unconscious levels. Such insights show how adverse events can lie outside of our knowing.
5. Chronic fatigue, like other chronic illnesses, often begins after one or more triggering events or “Adverse pre onset experiences (APOEs).” The many stressful events during Avdeep’s pregnancy, labor, and birth, as well as physical and emotional separation from her son after birth are all potentially traumatic for mothers and babies during a period of heightened vulnerability. For Avdeep, these events may have also reenacted past events to strengthen survival pathways from past traumas such as her own birth, childhood sexual abuse, lack of support and protection from those in positions of authority and who should be able to help, and loss of sensation in her legs (an important source of empowerment and nervous system-based perceptions for the option to mobilize to protect oneself, and more.
6. Avdeep’s chronic fatigue story highlights that our bodies have a deep capacity for healing, and that all kinds of supportive approaches can help, even as the journey can take time, effort, courage and perseverance.

Resources

If you would like to learn more about areas Avdeep touched on, here are blog posts on the science that helps make sense of ME/CFS as a freeze response (and why it’s not psychological); adverse experiences in babyhood and childhood and in childhood relationships as risk factors for ME/CFS; adversity before onset; as well as racism and other forms of discrimination, which I refer to as adverse institutional experience (AIE). Here are books, and therapies for making sense of trauma and how to work with its effects, as well as 11 tools that support healing from a trauma lens. If you’d like to share your story, you can learn more in my introduction to Chrillogs, in other chrillogs, or contact me.