Chrillog #2: Harper’s Chronic Fatigue Syndrome Story (ME/CFS)

This is Harper’s chronic fatigue syndrome story, also known as CFS, 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. Harper lives in Alaska. This is her Art.

Introduction

I am 39 years old and have had Chronic Fatigue Syndrome (ME/CFS) for about 12 years.

I feel like I live inside a sci fi movie these days – it’s all so alien and horrific – so it’s really nice to speak with someone who recognises something of what I’m saying! (I don’t normally even try to explain it).

I can only write in fragments – any time I try to write a proper narrative it ends up feeling untrue. 

Sometimes in stories I feel a pressure to sew it up neatly or end on a positive note, like I’ve “learned an important lesson,” but the reality doesn’t feel like that at all. My consciousness is so fragmented (like a bomb went off inside me when I became ill, and all the bits of me are in separate pieces which I can’t pull back into a whole). So I have to write in that fragmented way too.

Read Harper’s Story in a Free PDF

The form will show up momentarily.

Links to Trauma

On days when I’m feeling more ok, I think I can link my ME/CFS much more clearly with my past traumas / complex PTSD. On worse days, I fall back very easily into blaming myself for not functioning, being lazy or cowardly.

Rationally I can see that my need to stay very still / stay in bed has a lot to do with the freeze response as well as lack of energy. Action feels life threatening, like if I move or take up space I will awaken The Monster (if I am still, it won’t see me). I’ve lived in this for about 12 years, and it reminds me of living in domestic abuse, and many other overwhelming situations, when I was a child.

But on bad days I still judge myself for letting life trickle by, and for not having the courage or integrity to fight (in reality I do fight, of course, every day, but never directly). So my capacity to viscerally link the illness and the trauma – and hence my self-compassion – come and go.

History

Babyhood

My mum’s blood pressure was very high when she was pregnant with me, and I was born by emergency caesarian two months premature, weighing 2 pounds, and was in an incubator for around six weeks.

I think most of my childhood, even the first few months spent in an incubator, was an experience of having nothing and nobody there, not even a self or a body. This has definitely been my experience in ME as an adult – I would say that I am in a state of dissociation or derealisation 24/7. I’m yet to find anyone who has identified with this; it doesn’t seem to quite fit the criteria for either PTSD or ME, at least not in my experience so far, and that makes it more lonely and more shameful. But I continue my daily fight to recognise myself.

Childhood Relationships

My dad is very artistic and can be a very lovely man. He has his own demons and childhood traumas, which play out in addictions. He is easily triggered into rage and emotional abuse of others. I see him in my mind’s eye as being eight. As an adult, I’m very careful not to trigger him, as his anger terrifies me.

My mum, because of her own childhood trauma, has what may be narcissistic personality disorder. It feels like she cut off from her real self at a very young age and I’ve always experienced her as somehow “not there,” lacking the capacity to see from others’ points of view, as well as lacking self-awareness and emotional intelligence. Her view of the world is extremely black and white and childlike, which is sometimes very endearing and at other times very scary, as she can exhibit the cruelty and fury of a small child in an adult’s body. I see her in my mind’s eye as being five years old. She has married and moved many times in her life.

Childhood Experiences

My ACE score is 6 (adverse childhood experiences).

When I was around four my parents and I moved abroad. It was supposed to be long term but after a year they separated. Missing my Dad was compounded by my feelings of guilt and responsibility for how much he missed me. From this age (five), I felt responsible for his emotions.

I moved schools many times. When I was seven, my mum met and married my stepfather. He was possessive and became angry if I talked about my dad, or cried about missing my dad; then my mum would shout at me for making him angry. He went round to threaten my dad. I had nightmares about trying to physically protect my dad from him. 

We moved around with my stepdad’s work, and I continued changing schools (ten schools in total).

I was terrified of things the other kids were not, like any physical activity, gym, or team sport, which I’d always freeze in the face of. I spent a lot of time dreading and trying to get out of these things. Swimming – the risk of going under water – was a complete phobia. I came up with complex lies to escape it but was always caught out by the school and shamed for it by my mum and stepdad.

When I was nine, my stepdad moved us to “get me away from” my father. My closest allies were pet dogs, but these were given away whenever we moved, inexplicably replaced by another.

My stepdad became progressively more controlling and angry during these years. His mood appeared to take over the whole house, the air particles, and even my mind and body. The arguments were constant and sometimes involved him smashing things; I would sit upstairs and listen. The time between arguments was almost worse because of the build up; silences were pregnant.

I would be dropped at school after days-long screaming rows as if nothing was happening, which is also how I acted. 

I’d fly back to spend holidays with my dad and his new family. These weeks were like a revelation because you could make noise and act naturally, and I’d begin to feel like I was coming back to life and colour: I could see things in the distance, like my surroundings were returning to me. Then I would feel progressively more sick as it came nearer to leaving, and when I said goodbye to them it was like an overwhelm of grief which was too big for my body. I couldn’t grieve because I was leaving the only place that was capable of holding the emotion, and returning to emptiness and dark. I couldn’t show any emotions when I got back to my mum and stepdad because it caused huge rows. So the emotions got split off somewhere.

When I was 12 my mum and I hatched a plan to escape, which took several months of planning. I couldn’t tell anyone about these things.

Adulthood

I had a 14 year relationship which in retrospect was mentally and emotionally abusive on every level, but I couldn’t see this at the time. It was during this period that I started to become ill with ME/CFS.

My relationship helped – even though it was very bad, and didn’t help at all! It gave me a sense of self, belonging and importance on one level. But, being emotionally abusive, it also destroyed my inner strength and trust in my perceptions.

I tried to leave for 8 years of the 14, and couldn’t. The adult in me was desperate to be out from under his control, but the child couldn’t tolerate losing him, or the thought of him losing me. This internal conflict went on for nearly a decade, as I moved in and out of awareness about the relationship.

I judged myself ruthlessly for my weakness, and became further weakened. I had panic attacks and suppressed rage, and years of bladder symptoms (especially after drinking binges). Now, I see the bladder symptoms as a kind of sensitivity; at the time I believed they were continual infections caused by drinking. I had lots of antibiotics and over time started reacting to them (now I think this is a flight/freeze reaction: at the time I thought it was a dangerous allergic reaction).

I was caught in a bind where I believed I was having infections that were potentially life threatening if left untreated, alongside a phobia of medication which I also believed could kill me: there was no way out.

I couldn’t be fully open with medics as I didn’t trust authority figures, and vulnerability led to unmanageable shame. I’d always lived in a pattern of looking after myself not – ever once – trusting another enough to show myself when vulnerable.

Writing this, I can see that a lot of the difficulty I got into was through having faulty beliefs but no capacity to check them out externally, due to lack of experience of trust, or knowledge of vulnerability being in any way safe or useful. It literally didn’t occur to me that it was possible to be honest, and the idea of letting go onto another felt as if it would annihilate me instantaneously.

What Helped You Survive?

My brother and I have been very close since I was a baby; we were each other’s allies.

I wasn’t aware of needing to survive as a child because, of course, it was normal. My diaries show I was almost relentlessly positive and adept at getting on with it. I also wrote stories and drew comics about things I was trying to process. I copied my stepbrothers’ mannerisms and drawings as a way to try to take them home with me, by becoming them. I lived in other worlds – books, games, Lord of the Rings.

As a teenager, rebelling against authority – especially my mum’s – helped a lot. So did alcohol. I felt like I’d found some solidity in myself and a place in the world, through its support. Some safety, even just knowing it existed

Getting a sense of community for the first time as a teenager – a large group of friends – felt like having a family (one in which I could be myself and be reflected as that, rather than as a skewed version). This was life changing. Ever since, I’ve been most mentally and emotionally well when I’ve been part of a good community (like in higher education, or working in Steiner-based care work).

When these things ended, I fell apart without knowing why: it always felt like the world ended but I went on living, in nothingness, like the baby in the incubator.

Stressors Before ME/CFS

As an adult I had homeopathy for several years – and tried my best to be honest, or at least as honest I was able to be with myself  – but it didn’t help my symptoms. The time I was taking off work with the bladder symptoms made me feel guilty and shameful. Again, I was triggered by the relationship with authority – shame always overwhelmed me in jobs. I was working with a lot of challenging behaviour in my care work, which was triggering me back to the violence I’d grown up with, but I had no knowledge of what flashbacks were and assumed I was abnormally weak.

So this period before the onset of my ME/CFS was one of relatively unrelenting stress. I developed strange new symptoms like vertigo, and a fear of swallowing in case I choked. I moved apart from my partner but we stayed together as I remained unable to break up with him. I moved into my dad’s house for a time but this also reactivated trauma I hadn’t been aware of, as I had to walk on eggshells for fear of his anger.

I also became aware of the sense of not being properly allowed to exist. If things were about me, they were not about my Dad, and that was a trigger for him. So I had to kind of suspend myself in order to keep the peace. Despite their concern for me, neither he nor my mum seemed to want to truly hear about the real me

Onset of ME/CFS

One day leaving work I was hit by a kind of exhaustion I’d never known, and didn’t know how I was going to get to the bus stop, which I could see in the distance. This was the start of ME/CFS.

The symptoms continued to mount up and progress – physical, neuro, gastro, emotional, mental – and it felt like I was getting progressively further and further from the connection with myself and the world, “watching myself peeling away from myself like the skin of a banana” as I’ve heard it put. My past diaries show I believed this to be my own doing, something I was doing wrong, and I was trying to understand it and change it.

I stopped alcohol, sugar, wheat, dairy, etc for 6 years, but had no physical improvement, and I think the loss of my emotional crutches just took me further from myself/ body/ the world.

I stuck with it because I believed on some level that self-punishment was the only way to recover. I’d done a masters in creative writing, and a postgrad in counselling. During the latter, I always felt weird reading about trauma when it came up.

During an inner child weekend, I went into full blown flashbacks where I reverted back to the child – I don’t remember a lot. I thought I was making it all up for attention.

After the course finished, my symptoms continued to get worse no matter what I did – I had to give up work. I became weaker and weaker in my relationship – he became like my carer, driving and feeding me. Even though I had a dim sense he was part of the reason I was so weak, I couldn’t let go of his care. He ended the relationship when he met someone else. I thought I’d get better as a result, but this didn’t happen and I became suicidal for the first time in my life.

Challenges with Healing

Despite not drinking, I turned to addiction recovery to help my mental state. I also started following the Lightning Process (designed to cure ME by altering your own neural pathways).

I spent many years doggedly doing these recoveries. I struggled with both because – I realise now – neither really allowed the trauma perspective, which was seen as not taking self-responsibility, and therefore unhelpful.

Both recovery systems were, broadly speaking, based more on what one is unconsciously doing to create one’s own problems, rather than being about what’s happened to you.

I felt like I needed to access the trauma narrative (I had recently found a Peter Levine book and felt it described exactly what was happening to me). But the paradigms I was in made me believe that this amounted to unhelpful victimhood. 

So instead I was trying to be my good/ well self and push away the bad/ ill self.  This involved endless drilling down into myself to find/ exorcise the causes of my problems.

My levels of fear and dissociation were extreme.  I did try trauma therapy but by this time my anxiety was too great to even sit in a room: I had no body or sense of my surroundings, and only 24/7 terrifying thoughts screaming at me. I experienced everything two-fold, as my self felt entirely split into two contradictory parts. I began to feel myself viscerally losing the will to live.

A Turning Point (Resources I)

Losing the will to live was the point at which I saw an Emergency GP – the first time I’d ever been open with authority… I barely remember it. I was assessed by the mental health team and given a place in a women’s crisis house for four weeks, which saved my life.

In the crisis house, I asked for a copy of their paperwork on me. One piece said I’d clearly had a ‘very abusive childhood’.

I kept this paper like a life raft. It linked my symptoms now – my adult self – with the past/ my child self, and this connection of the two was what I intuitively knew I needed in order to survive.

I also knew I needed to use it as a platform for anything else: without this solid platform, anything else I’d tried had drained away like water through a sieve. This one sentence could mean that my illness wasn’t my fault/ my creation/ my weakness/ my madness. It gave a context, something which every other approach had seemed to structurally deny.

I chucked away my self help books, 12 step books, wellbeing books.

The crisis house helped me get an apartment and some mental health support which eventually led to a diagnosis of complex PTSD (although it took a protracted fight for me to be given this exact title, rather than “anxious or dependent personality disorder”. This felt like another part of the overall fight I was engaged in: they wanted to name the effects, I wanted to name the cause).

There had been years and years of the wrong kind of help: the kind that told me who I was rather than asked me; the kind that forced me to adjust to it rather than adjusting to me. The help had always been one-way rather than two-way, like my family dynamics.

I’d always gone along with this because I believed I needed to be punished, needed to “grow up and take responsibility for myself.”

Even the mental health system wanted to “help” me along these lines, by offering group hospital therapy that would teach me to better see things from other people’s points of view.

But by now I knew enough to trust my bodily reaction and say no. Seeing from others points of view was what I was too good at: I needed to learn to reduce this and find my own.

What Has Helped (Resources II)

Everything that has helped since that turning point has been based on the following logic: moving from Reality A (it’s all my fault/ I’m abnormal/ shameful/ weak/ “the problem”) to Reality B (it’s not my fault/ there is a wider context/ “it’s political”).

This is my understanding of the trauma perspective.

With the support of the crisis house, I’d suspended all contact with both my parents. I did this for five years. Not out of blame or punishment but because I needed to understand the dynamic, and I couldn’t clearly see it whilst inside it. I needed to find my own viewpoint without it being crushed, or being pushed into crushing it myself in order to protect others.

I started to see my long term relationship had been mentally and emotionally abusive: that all the yards and yards of diaries I’d written trying to “work out my part in it” could instead be summed up by the sentence “he was a bit of a prick”.

I started to become aware of current friendships I had with people who were “not quite right”, and ended those interactions too.

I entered into a relationship with a man who is kind, intuitive like me, and with whom I began the rocky and sometimes excruciating road of trying to learn trust.

Like me, he had a traumatic childhood and has a chronic illness as an adult. He introduced me to the first consultant who appeared to have an understanding of my condition.

This consultant helps me try different approaches to working with my health based upon the trauma perspective, nervous system and vagus nerve. He’s encouraged me not to see the ME/CFS and PTSD as separate conditions, but the same thing playing out on a variety of levels.

This was a huge relief after having had GPs ask me “which I wanted to treat” because “they have opposite treatment pathways”. I’d never been able to choose between them, in the same way I couldn’t choose between different parts of my self.

Getting on My Own Side (Resources III)

Moving from Reality A to Reality B has also been about getting on my own side, rather than attempts at healing and managing through self-attack.

In retrospect it seems obvious that nothing of any real value could happen before that.

Getting on my own side is inextricably linked with seeing other people’s parts in what happened to me.

That’s why I couldn’t get on my own side before, when exhorted to be kind to myself. I needed to shift my basic allegiance to Myself, rather than Them (my parents, my ex partner, the wrong systems). Serving both them and myself at the same time was impossible.

So I think choosing my own survival over what felt like my parents’ survival was a key turning point.

I genuinely felt like breaking off contact would kill them, and I had to choose myself anyway; I had to stand still in the face of life-threatening guilt and lifelong responsibility for others. Doing so was acting upon an extremely dormant and previously unused sense that the guilt was not really mine but had been given to me from birth. And I needed myself, them, and the whole universe to know I could resist that guilt: to give back what was theirs.

It felt like, in standing still, I broke an unhealthy bond and developed my first sense of being separate and living in a truer paradigm. This inability to have my own separate reality before was why I couldn’t leave the abusive relationship. I needed to do it with parents first – break the root of it.

Present Day (Resources IV)

My dynamic with my parents now is in no way perfect. It still feels too dangerous to stick up for myself in the moments there are direct, scary encounters with them, but the separating out I’ve done feels irreversible.

I no longer pick up the phone out of guilt. I see them as younger than me and this seeing has stopped a huge amount of the mental and emotional confusion and complication that filled my brain and body for so much of my life.

It feels like seeing the true state of affairs has calmed down a part of me that had always been in flux and turmoil.

I no longer take on what’s theirs in the same way – I’m not confused into thinking it’s mine. I have something of a boundary (as long as I don’t stay in their houses!) and I have a great deal of respect and compassion for them.

At the same time as no longer taking on what’s theirs at a subconscious or psychic or bodily level, I get back some of me. I’m not quite sure how or what. I’m still fucked in many ways. My self care still involves huge amounts of alcohol, tobacco, sugar, avoiding others, avoiding reality, avoiding myself, self criticism (which is still so ingrained as to be invisible).

I get triggered all the time, I act out horribly with my partner – I can be completely unbearable. I get scared that I won’t survive the risks of my lifestyle (the addictions, alongside being mostly sedentary due to ME) long enough to fully recover.

One of the things I’ve learned from my partner is how to apologise, and it’s like learning I can DO something wrong, but that doesn’t mean that I’M BAD.

But I’m fundamentally and powerfully willing to do the next right thing, and the next and the next, one step after another.

Veronique’s Commentary

When we live through experiences like Harper did through much of her life, it gets normalized in our minds. This is because it’s all we’ve known. It’s also because our culture does not yet recognize what trauma looks like. In addition, kids believe what happens to them is their fault. Even as experiences such as Harper’s are known to be traumatic.

Harper’s Chrillog is exquisitely articulated. It conveys deep awareness through the trauma lens. Her reflections speak, profoundly, to the utter dedication so many people with chronic illness have to finding their way. This dedication happens despite the doubts, blame and mistaken perceptions of others that society tells us should be able to help. Harper’s journey speaks to how intuitively we recognize what isn’t quite right about WHO others say we are or WHY they think we are sick. Her voice reveals how and why we keep searching and digging, listening to a sometimes very subtle inner voice, one that has been buried and negated throughout our lives but that refuses to abandon us.

Harper’s Risk Factors for ME/CFS

Although the cause of ME/CFS remains unknown and there are no specific tests for diagnosis, the nervous system and trauma perspectives I have been exploring for the past 2 decades suggest that chronic fatigue syndrome reflects a body whose physiology is operating in a state of relative hibernation known as freeze. Freeze is a nervous-system-based state of survival that is similar to death. It occurs when we are unable to successfully overcome or escape situations of overwhelming threat with more active survival strategies such as fight, flight, or communication and our systems automatically shut-down to out wait the threat. The trauma lens explains how this derives from nervous system perceptions of threat and is not psychological. It identifies potential risk factors for ME/CFS. It also offers insights into how Harper’s shift of allegiance to herself is an indication that her state of relative freeze is shifting back towards Life. This is a different way of thinking of how to support health and healing, and does not imply her illness is “in her head,” as is still commonly believed.

ABEs

High blood pressure during pregnancy is an experience that would have been stressful for both Harper and her mother. It is also a risk factor for premature birth and cesarean birth. A mother’s personal experiences of adversity affects her risk for physical illness during pregnancy, as well as for complications. These kinds of early adverse events can be traumatic for mother, baby and other family members. They are known as adverse babyhood experiences (ABEs), and are suspected risk factors for ME/CFS.

As a premature baby Harper’s nervous, immune, metabolic, respiratory and other systems were more immature than already occurs when born at term and would have been impacted by events such as being born cesarean, her physical environment and by experience. While life-saving, separation from adult caregivers for incubator care can have an impact, such as on how a little body learns to regulate its own physiology, which is designed to be supported by the close physical presence of parents. Separation affects risk for bonding disruptions for a mother, which in turn influences her innate capacity to feel love for her baby and can affect her baby’s short and long-term health. Separation would also have increased Harper’s levels of emotional, physical and physiological stress as well as her feelings of fear, isolation and overwhelm. Harper’s description of “feeling like nothing” is an example of a survival state of last resort known as freeze,

ACES

It is common to think that losing a parent due to divorce is too “normal” of an event to be considered a truly important risk factor for something as serious as a disabling chronic illness. Harper’s description of all that surrounded this one event, however, highlights why parental conflicts can impact almost every aspect of a child’s life for years or decades. Harper’s additional exposures to parental rages, parental substance dependence, physical and emotional abuses and neglect are adverse childhood experiences (ACEs). ACEs are risk factors for ME/CFS. An ACE score of 6 is associated with a striking increase in risk for suicidality, to name but one effect, and Harper’s story exemplifies why this might be. Additional adversities in childhood, such as going to 10 different schools, also have similar effects to the 10 more well-studied ACEs.

ACREs

Harper’s terror as a child and the need to take care to not trigger her stepfather’s rage are examples of experiences that induce quiet behaviors, staying as small or invisible as possible, and the suppression of anger and other natural impulses to escape or overcome threat. These are forms of the freeze response. Being shouted at when she cried or talked about missing her father are parental behaviors that can elicit eventual freeze responses in children because overwhelming feelings that can not be regulated or integrated lead to shut down. Missing experiences such as having no reliably safe adult caregiver to go to for comfort is another risk for states of freeze.

Harper’s parents’ struggles with anger, shaming, conflict, silence and lack of acknowledgment such as after screaming rows are reflections of unresolved trauma. Without awareness of the causes of such symptoms, parents pass these effects of trauma to their children through their attitudes, behaviors as well as epigenetics. The inability to reliably nurture and comfort, as well as patterns of not making repair after conflicts, misattunements and scary behaviors are elements of emotional neglect. They are also part of the vastly under-recognized effects of adverse childhood relationship experiences (ACREs), also known as complex PTSD. Emotional neglect is an ACE and a risk factor for ME/CFS. Adverse experiences weaken or block our social nervous system’s natural ability to assess for safety and trustworthiness in others and thereby influences physiology, emotions, behaviors and relationship interactions, which can include health care professionals.

AAEs and APOEs

Stressful events in adulthood, such as abusive relationships, chronic symptoms, reminders of our own traumas through the populations we work with or the type of jobs we have, and self attacking patterns are Adverse Adulthood Experiences (AAEs) that can add further to risk for ME/CFS. When such events trigger onset of ME/CFS I refer to them as Adverse Pre-Onset Triggers or “APOEs”. Situations in our present life that bring up similar feelings we had in childhood are known as “triggers” and are a well-known response to unresolved trauma from the past.

Examples of Indicators and Resources

Indicators of Freeze

Harper’s story exemplifies the gradual evolution of states of freeze that are common in ME/CFS. Rather than being caused by our thoughts or beliefs, as is still mistakenly believed, symptoms of ME/CFS reflect a common underlying cause also seen in autoimmune and other chronic diseases: exposure to too much adversity in the face of too little support. This is because overwhelming adversity that cannot be overcome through communication (social nervous system) or mobilization (sympathetic nervous system) leads our nervous systems to the default biological survival state of shut down and freeze. It is not a particular event that leads to illness, but the intensity and duration of repeated exposures in the face of too few or too little nurturing, supportive resources. Symptoms reflect the evolution of a survival response and how effects accumulate to impact an increasing number of different systems over time (mental, behavioral, emotional, relational, physiological).

To highlight some of the symptoms that reflect states of freeze, the following list of quotes (some are shortened slightly to fit into a single line) offers examples and indicators of states of “freeze” in Harper’s life:

• Most of my childhood was an experience of having nothing and nobody there, not even a self or a body
• I would say that I am in a state of dissociation or derealisation 24/7
• Feeling “freeze” around physical activity and team sports
• Living in nothingness like the baby in the incubator
• Not being allowed to properly exist
• Having to “suspend myself in order to keep the peace”
• The emotions got split off somewhere
• I’d begin to feel like I was coming back to life and colour
• Having “no body or sense of my surroundings”
• Feeling fragmented “like a bomb went off inside”
• “Action feels life threatening” (mobilization is a threat when freeze states are how our nervous systems are helping us survive overwhelming threat)
• Getting progressively further and further from the connection with myself and the world

Resources that Support Health and Healing

The kinds of resources Harper is accessing on her journey of healing are often overlooked or thought to imply that healing is psychological and that the illness must be too. A trauma lens recognizes how these reflect gradual emergence from nervous-system-driven biological states of freeze that shift to states associated with more aliveness. This is facilitated by that which supports self-agency as well as connection to self and others (social nervous system), mobilization (sympathetic nervous system) and access to a sense of safety, peace and groundedness (supportive states of dorsal vagal activity, which are different from survival states of freeze). The following quotes are examples of Harper’s resources, some of which are shortened slightly to fit more easily onto one line.

• You could make noise and act naturally, and I’d begin to feel like I was coming back to life and colour
• I had an ally in my brother and step-brother
• I made great (and lifelong) friends as a teenager, started drinking and using recreational drugs, and stopped respecting my mum’s authority; the freedom of all of this was amazing
• I’ve been most mentally and emotionally well when part of a good community
• Validation that my illness wasn’t my fault/ creation/ weakness/ madness
• It took a protracted fight for me to be given this exact title (they wanted to name the effects, I wanted to name the cause)
• By now I knew enough to trust my bodily reaction and say no
• Shifting from Reality A (it’s all my fault/ I’m abnormal/ shameful/ weak/ “the problem”) to Reality B (it’s not my fault/ there is a wider context/ “it’s political”)
• Suspended contact with my parents and friendships that were not quite right
• I needed to find my own viewpoint without it being crushed
• My relationship could be summed up by the sentence “he was a bit of a prick”
• The first consultant who appeared to have an understanding of my condition
• Getting on my own side, rather than healing and managing through self-attack
• Seeing other people’s parts in what happened to me

• I needed to shift my basic allegiance to Myself, rather than Them
• Serving both them and myself at the same time was impossible
• Choosing my own survival over what felt like my parents’ survival was key
• I felt like breaking off contact would kill them, and I had to choose myself
• Acting on a dormant and previously unused sense that the guilt was not mine
• Developed my first sense of being separate and living in a truer paradigm
• I no longer pick up the phone out of guilt
• It feels like seeing the true state of affairs has calmed down a part of me
• I no longer take on what’s theirs – I’m not confused into thinking it’s mine
• I’ve learned .. how to apologise,… it’s like learning I can DO something wrong, but that doesn’t mean that I’M BAD.
• I’m fundamentally and powerfully willing to do the next right thing

The willingness to do whatever it takes is far more common than most health professionals recognize. Harper’s story provides a way for health professionals, educators and others with chronic illness in all walks of life to better understand adversity and its effects. Harper’s detailed insights also suggest what can be done to help mitigate such effects – whether in early life or childhood, in adulthood when indicators of effects of trauma become more overt, or after the onset of chronic fatigue and other symptoms.

Learn More

If you would like to learn more about areas Harper 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; and how medical care can be traumatizing, which is an adverse institutional experience (AIE). Here are books, and therapies for making sense of trauma and how to work with its effects, as well as my favorite 11 tools that support healing from this lens. If you’d like to share your story, you can learn more in my introduction to Chrillogs or contact me.

Events: I will be giving a free talk on ME/CFS and the Cell Danger Response at the Fatigue Super Conference, available free May 1 and May 2, 2021 with 40 other speakers. Register free here.