From Chronic Illness to Continuous Healing

How Pushing Ourselves Leads to Burnout

Bodies are amazingly resilient. Most injuries heal within a matter of weeks. If an injury continues to be in pain past its typical healing time, you might have mindbody pain.

Maybe you have been struggling through school, or trying to work and raise kids in a nuclear family, or working and tending ailing parents or grandparents. Maybe you have been working a minimum wage job and just trying to pay the bills. One way or the other, you have been pushing yourself beyond what feels good, beyond what you seem to be able to recover from. Maybe you keep telling yourself that if you can just get through this one thing, everything will slow down...but it never does.

You may have had boundless energy in the past, or incredible stamina, or strength, or focus. Maybe you needed very little sleep. Or food. Or time off. But now, you find you are surprisingly, painfully limited. Or maybe you just felt normal before and now you feel incapacitated – like an “invalid.”

No coincidence that you feel “invalid” when you don't have the capacity you used to have! Our culture teaches us that our validity as humans is based in our capacity to keep up (with an incredibly fast-paced culture that treats bodies like machines) – even if we are pushing ourselves without knowing it. Our bodies, hearts and minds do their best to hustle, and they can be resilient for a long time, but not forever. Often we push ourselves beyond what we would prefer for a long time, and eventually, we can't do it anymore.

These new limits might show up after an injury, a big stressor like a move or someone close to us dying, or a virus that has lasting impacts long after the initial illness passes. Sometimes, we can't even point to what the cause was, but we know our bodies are behaving differently.

My Chronic Illness Story

I got a mild case of Covid for a week. The following week, I was scheduled to return to work where there was intense work stress - my funding and position had been cut and I was getting put back into a role I had started out in 25 years ago.

Seemingly out of nowhere, I developed a host of debilitating symptoms – weakness and lightheadedness, fatigue, including post exertional malaise (PEM), cognitive problems (brain fog), tremor, sound, light and visual overwhelm, headaches, sleep disruption, and anxiety. I would go back to work, then decline, getting sick enough to have to be on sick leave for weeks to months. That happened in cycles for a year. I used a career's worth of sick leave in that one year.

I was diagnosed with Long Covid (LC) and ME/CFS (myalgic encephalomyelitis and chronic fatigue syndrome). ME/CFS are chronic conditions of fatigue that don't get better with rest. They don't know why it happens to some people, but it seems some people are predisposed to it and viruses are one of the things can set it off.

I went to lots of doctors – generalists and specialists. I had all sorts of tests run, including an MRI. They prescribed a variety of medicines. Nothing worked. At my worst, I could only get out of bed for short periods. I spent days in a dark, quiet room, my mind in a fog. I wondered, “Will I be like this forever?”

Discovering Mindbody Pain

Meanwhile, my ADHD may have saved me. Chronic illness became my special interest hyperfocus. When I had the energy, I would do research. I started with medical research – exploring all the latest LC, ME/CFS research, but eventually stumbled upon a book by Dr. John E. Sarno about back pain that first introduced me to the idea of mind-body pain.

When you think about it, the fact that we have split psychological and physical healing into separate disciplines is absurd. We can literally have a therapist and a general practitioner and they don't share notes. As if our psyches, emotions and thoughts were independent from our bodies! As if our bodies didn't influence our thoughts and feelings. The doctors I met with had no idea what to do with my illness (although my doc was supportive of me not going back to work so I could rest). Rather, it was the mindbody community that taught me that after physical causes for continued pain are ruled out, one can guess that chronic pain is coming from the nervous system itself.  (The nervous system tranmits messages between the brain and the body to control bodily functions.) This is called neuroplastic pain, nocioplastic pain, mindbody pain, central sensitization or TMS (tension myositis syndrome or tension myoneural syndrome).

Is Mindbody Pain All in Your Head?

When I was in high school, there was a girl that was always getting sick. People would say, “Her pain is just psychosomatic; she probably has Munchhausen Syndrome” meaning it was all made up in her head – she was doing it for attention. I was afraid if I complained about my own pain, people would say the same about me.

But really, I have lived a life of ignoring my body. I remember passing out from period pain in the junior school bathroom because I didn't want to make a big deal or admit I had cramps. I have broken more than one bone and not known it because I didn't recognize my pain signals. In fact, we get strong training in this! Do you remember having to pee, but the elementary teacher telling the class that no one was allowed a hall pass until the end of the class? I do! Even as adults, many of us work on schedules with two 15 minute breaks and a 30 minute lunch - as if our bodies' processes could be scheduled!

Similarly, there were all sorts of emotions I learned to suppress, ignore or deny. Neurodivergent-me in the modern school system experienced the demands, rewards and punishments, praise, blame, shame and guilt as totally off and overwhelming. I spent much of my youth frozen, overwhelmed, ashamed, and depressed (on the outside) and furious and defiant (on the inside.) By the time I was an adult, there was little space for my fear, sadness, grief, anger, frustration or shame. I had learned to stay far away from those dangerous feelings and strive to be a good, obedient student and employee, although, often I couldn't make myself do things. It was only when I got sick enough to be bed ridden did I realize something was fundamentally off.

Being terribly ill with Long Covid forced me to turn toward my body and really listen. My body was SHOUTING at me. I tried to “listen” from the medical doctors' paradigm, but they didn't help me. Luckily, I found psychology and somatic healing and was surprised how much there was to hear from myself. Using the tools of Internal Family Systems (IFS), Eye Movement Desensitization Reprocessing (EMDR), and Somatic Experiencing (SE), I learned to deeply listen to myself – body, heart and mind.

Its like my body turned my sensitivity up to 10 so I could listen to its message – THERE IS STUFF IN HERE THAT NEEDS TO BE DEALT WITH! YOU ARE PUSHING YOURSELF THROUGH LIFE! STOP PUSHING! FEEL WHAT IS HERE!

All my senses were blown out – my eyes, ears, nose, mouth, skin...my whole body – all overwhelmed. Just looking at all the products on the grocery store shelves was too much. Listening to the radio at a normal volume was too much. Fluorescent lights were too much. Following a video at normal speed was too much. Holding my head up to eat was too much. Going to a job that broke my heart was too much. Everything, for a time, was too much.

When I listened to myself with care, I discovered my somatic experiences of pain, overwhelm and exhaustion were each tied to buried emotions that I began to uncover with help.

I was forced to recognize that our bodyheartmind will use louder and louder signals to communicate with us. So, no, its not all in our heads. But our brain (aka nervous system) IS part of the experience - as is the rest of our body, heart and soul. The experience of chronic pain of the body is genuine, but the source (and the path to recovery) is a holistic one. 

Pain and the Brain

Every day at every moment, the body is receiving sensory information (nocioception) and delivering it to the brain. The brain is combining that data with predictions based on prior experience, context, emotions and memories. When sensory data and/or prior experience appear to say threat is likely, pain helps direct behavior to avoid danger. This is the body and brain working in harmony. Normally, this is a helpful process that keeps us safe. And ideally, we use these cues of danger to learn about the world and make safer choices in the future.

But, when we experience intense physical or emotional stress and don't have support to process and integrate it, we stuff it away without making sense of it. That leaves our bodies traumatized. That is to say, our bodies are left with a big stack of cues for things that the brain perceives as dangerous, without the sense-making to understand those cues in context. Danger cues might be external - smells, tastes, people, places, or things - or internal, such as your bodily sensations, actions, emotions, or thoughts. Almost anything can get linked to threat. These cues may be totally unconscious. Now, something in the present is reminding you (subconsciously) of something in the past, and for whatever reason, you can't ignore the feelings this time.

Some folks theorize that viruses, like Covid, can deplete you and hyper-sensitize your nervous system so that you can't ignore the backed up emotion like usual. For me, that feels like what happened. Fo you, you may be in a situation where there is little or no problem right now and your pain feels out of the blue. It may be you have an injury or experience now that is a similar situation to a thing in the past, but you are in a very different place in your life and have way more resources to handle it, and yet you are struggling like in the past – you feel like you should be able to handle it!

Regardless of how you started to notice chronic illness, please know that the brain, automatically and unconsciously, can generate pain or weakness in the now, as a message.  Additionally, uncertainty can lead to fear and anxiety, which can cause the brain to err on the side of caution and intensify pain or weakness as a warning to you.

So, mindbody pain comes from a brain input that’s become sensitized and hyperactive. If your nervous system believes you are in danger, especially from a specific activity, it will send danger signals that gets interpreted as pain or weakness. Your brain could decide even a minor or routine activity like standing, walking, using a certain muscle or limb, or even looking, listening or thinking is dangerous, painful, or exhausting. At its worst, the brain decides everything, or near everything, is dangerous and a risk.

If Pain is Neuroplastic, Does it Mean Its Not Real?

Nope. Your pain and exhaustion is totally real. It IS happening. But your mind and heart space can influence what your body perceived as danger and what your body does in response. So the good news is you have more control over your symptoms than you think. And if your pain is being stimulated by old emotional wounds, you can heal them and change your physical experience.

Getting Out of the Pain Loop

Below are some key steps to how I got out of the chronic pain.

1. Self Listening

   
   

   I went far deeper listening to my bodyheartmind (and thus the parts of myself I had been denying) through self-attunement, mindfulness practice and therapy. (Listening to your body, heart and mind after a lifetime of ignoring yourself takes regular practice!)

   
   

   Somatic and emotional listening: I learned to notice far subtler layers of how I was feeling emotionally and how those emotions showed up in tiny ways in my body – fear in a tight stomach, heartache in a burning chest, sadness as a lump in my throat, distrust as a tension in my jaw, hopelessness as a weakness in my body, and so on. And I saw how I could track these sensations to attend to the emotions my parts were experiencing.

   
   

   Nervous system listening: I learned to holistically track my nervous system in a new way. I learned our nervous system responds to how resourced we are and is a warning system for when we are running low in a holistic way – physically, emotionally, psychologically, spiritually, etc. Our resources are all connected, so if you get exhausted in one domain, you will most likely be depleted in the others. When you are hyper-sensitized, as I was, there is not much resource there. (The disability community calls resources “spoons”.) You might use all your spoons on walking, crying, or cooking. When you are out of spoons, you will experience exhaustion or pain. We call a lower level of this burnout (reduced functioning, increased sensitivities, loss of skills, emotional meltdowns); a higher level of this becomes chronic pain and/or fatigue. I learned to tune into the subtler signs I was overwhelmed or wearing out and was able to start curtailing my activities and allowing myself to rest.

   
   

2. Self Care

   
   

   Healing through somatic connection: I did deep work with a practitioner to attune to my somatic and emotional feelings and trace them back to parts with early wounds that were waiting to be witnessed and made sense of. Through EMDR and SE I learned to be with my somatic sensations and somatic memories and integrate them. The cool things about these modalities is the work is, in some ways, simple. It involves noticing what your body and heart are feeling and allowing those feelings to do what they do – stay the same or change.

   
   

   Healing through parts work: Through IFS, I met numerous parts of myself that had been suppressed in my subconscious – young parts from early trauma memories – trapped in terrible moments and lingering in pain. These young parts had limited understanding of the situations they experienced and used pain to manage my behavior to get out of stressful situations. I was able to listen to their experience, update them to the new world I live in now, and bring them out of those stuck places. (Many more blogs to come on IFS!)

   
   

   Expanding my Self-love: Through meditation (shout out to Pema Chodron) and IFS, I expanded my capacity to connect into my Self energy – a state of expansive, loving, attuned awareness that is connected to all things - as a regular practice. I developed a deeper skill to turn this loving attention toward my parts (and their emotions and sensations) and give them the companionship and resonance they missed out when they experienced harm.

   
   

   Expanding my Self-empathy: I used Nonviolent Communication (NVC) to receive (from myself and others) deep empathy for my parts' experience – naming feelings and the beautiful needs underlying all my (parts') actions. Discovering the sense-making of aspects of myself that were labeled as problems was, and is, deeply healing. Humans make sense. Seeing the ways in which my actions and limitations were natural outcomes of my experiences and traumas and were actually part of values that I care for gave me more emotional room to accept myself exactly as I was and am. For example, my inability to do tasks when there is a demand comes from a deep (and honorable) desire for autonomy rather than because I am deficient.

   
   

   Tending to my nervous system: In addition to the psychological healing of self empathy, I learned to tend to my emotional and nervous system state by using tools to calm myself when when I was activated. I practiced meditation, breathing exercises, yoga, listening to calming music, nature time, singing, baths, and acupuncture to slow myself down and nurture myself.

   
   

3. Saying No

   
   

   Self-listening allowed me to learn to notice my levels of nervous system activation and stop activities before I experienced extreme exhaustion and pain. I cut out everything I could that I experienced as a stressor, even if a part of me argued that I was being unreasonable and I shouldn't have a problem with it. Even if it meant I had to say no to “normal” things. Even if it meant I could't have visitors or I had to ask someone to leave mid-visit. Even if it meant I had to stay in bed, or later, to have a stool at the stove, because I couldn't stand to cook a whole meal. Even if it meant I had to shower sitting down. Even if it meant I had to quit my job and change my career path!

   
   

   The list of things I cut back on was extensive. It had me realize the subtle pressure of comparison we are all under to do and be more. I had to do a TON of resting, and, to this day, consciously choose to do less than some parts of me would like to. But the amount I had pushed myself for over 50 years required an extreme level of equalizing by lots of no-saying. This shrank my life down very small for a while, which was scary.

   
   

   But, when I started healing, I recognized I was giving myself a gift of rest which wildly relieved parts of me that, unbeknownst to me, were profoundly burned out. Living 50+ years in a culture of power-over expectations, punishment and reward, control, hierarchy, and demand left me frozen and thinking something was wrong with ME! But as I listened to the parts from my past and made sense of my life, I could see all the ways that our dysfunctional system(s) leave us anxious, avoidant and at war with ourselves. I discovered what I will tell you now. There is nothing wrong with you. You have permission to be exactly as you are. You make sense. You have permission to say no. You have permission to get help.

   
   

4. Getting Help

   
   

   A surprise aspect of saying no to doing things meant I needed help to do the things I normally did for others and/or myself. This left me needing to ask for help. (YUCK!) Recently, I heard Prentis Hill quote Susan Folkman in saying stress is the perceived discrepancy between the demands of a situation and the resources available to cope with it.  This inspired me to consider what life would have been like if, when things went awry, rather than believing something was wrong with me, I recognized I was under-resourced to complete the task (often because our system doesn't support meeting our needs)! That changes everything.

   
   

   So, I released my unconscious cap on how much support I could have and gave myself permission to get as much support as I needed until I could accomplish what I desired! This equated to oodles of support – embarrassing levels (to a part of me) of support that was, ultimately and surprisingly, profoundly healing. I asked for help to be shopped for, cooked for, to be driven around, to be brought food, I got two different therapists and two different coaches, all for different things. I changed and limited the activities I did with others for over a year. I learned I need a body double for near everything hard I need to do and I gave (and still give) myself permission to ask for it. (Who made that imaginary cap on support, anyway??)

   
   

5. Baby Steps Forward

   
   

   Lastly, when I was ready, I started doing things (in tiny ways at first) that my body was responding to with nervous system activation, but I also knew were not dangerous - like walking, even. There isn't great language in our culture for what changed when I did these actions. I changed the way, or the orientation with which, I approached actions. I did things with tons of slowness and mindfulness. I stayed open and curious of my experience all the way through. My Self knew I could trust it would be safe and I gave myself gentle encouragement, but I was also tracking how scared some parts of me might be and made sure I didn't go too fast or push myself too hard. I asked for tons of support. If I got exhausted or overwhelmed, I would stop and remind my tender parts that I was listening and tending to them. I was far gentler and more self-attuned than ever before.

   
   

   This lovingly moving forward towards challenging things allowed me to re-train my brain that doing things in the world was not inherently dangerous and I had my own back if I was going to challenge myself, but it got to be too much. You could call this both neuro-re-wiring and building relationship with younger parts of me who were learning to trust my Self-leadership.

I am 99% recovered. I am back to long distance biking, kayaking, hiking, swimming, etc. In some ways, that last 1% is a gift - a few times a year I will get hints of the old symptoms – fatigue, headache, fuzzy headedness, tremor – and I will know to listen, self tend, say no and get help until I can return to full activity levels. Usually I am going too hard physically or something is straining me emotionally I need to attune to. My body no longer needs to shout at me. I am grateful that my parts communicate with me to tell me when things are too much.

After this experience, I chose to support others in their healing through Internal Family Systems. Feel free to give me a call if you want to learn more.

PS. Check back for links to mindbody resources soon!