The Root Causes of Complex Chronic Illness and Pain—and the Path to Recovery

September 27, 2024 Alanna Carlson Consulting

The following is a summary of what I learned during my two years of recovery from Long COVID and self-study that I engaged in to learn how to heal from chronic illness. Keep in mind that I am a lawyer and consultant, not a health care professional.

If you've exhausted every medical exam and test, ruled out structural causes of your pain or illness, and still aren't feeling better and your medical team has no plan for you to recover, it may be time to explore other options to support your body. The path to recovery often lies in understanding the deeper, internal factors that might be part of your suffering.

What Makes Us Prone to Complex Chronic Illness and Pain?

There’s no one root cause, but many people with chronic conditions share similar experiences. As communities have known for centuries, there is no separation between our minds and bodies, and strong sources of distress can leave a lasting imprint on the body.

Here are a few factors that may play a role in creating a risk for illness to show up:

Daily Life Stress: Work pressures, financial worries, conflicts with family or friends, overwhelming news cycles, masking disabilities, sensory issues, and systemic oppression like the patriarchy and colonialism.
Early adverse experiences and beyond: childhood or adulthood neglect, ignoring, abandonment, absenteeism, abuse, violence, bullying, conflict, trauma etc can take a toll
Cultural Conditioning and Protective Coping Mechanisms: as children, our inner selves craved freedom, expression, and joy. But in order to fit in with societal expectations, you learned cultural conditioning and protective coping mechanisms to suppress your strong emotions and act as a goodist or people-pleaser, perfectionist, co-dependent, masking, hyper-responsible and/or over-achieving person.

This is all really exhausting! Your body is able to respond to certain amounts of stress in a positive and healthy way. Longer amounts of stress can also be tolerated if you have the supports.

If there are a lack of supports and severe and ongoing exposure to intense stress, it can create a lot of internal pressure. This pressure might build for years until something like a virus, medication, injury, or another stressful event causes an overwhelming stress response. This distress is overwhelming stress and emotional response characterized by a sense of feeling unsafe. your brain (specifically, the amygdala) interprets the distress signals as threatening and your autonomic nervous system goes into survival mode: fight, flight, and/or freeze.

What Happens During a Chronic Stress Response?

When your body enters fight or flight, adrenaline kicks in to help you. Your vagus nerve (cranial nerve 10) controls your functions to raise your heart rate, speed up your thoughts, and increase inflammation and pain. Digestion slows down, rest becomes difficult, and you might even experience random symptoms like dry mouth. Your body is ready to defend yourself or flee. This is a survival mechanism.

If there are further activations (triggers), your body may enter freeze and shutdown states marked by a decrease in digestion, brain fog and memory issues; and you feel exhausted and true rest feels impossible. You may experience dizziness and an increase in your pain threshold. There can be all kinds of seemingly unrelated symptoms. You may have ringing in your ears and changes to your eyesight. You may feel numb and hopeless.

You can get stuck feeling like you're constantly on high alert, or in a complete shutdown, disconnected from your emotions and stressors, or flip back and forth between these states frequently, and experience a range of complex symptoms. The symptoms/pain may stay the same or move, or be triggered by certain activities.

Being in survival states keeps you distracted and avoiding the difficult emotions and stress. These symptoms and pain are very real.

I made a map to help navigate through these confusing sensations and experiences.

There's Nothing Wrong with You—Your Body Is Protecting You

It’s important to understand that there’s nothing “wrong” with your body doing this. It’s doing exactly what it’s supposed to do: protecting you in the best way it knows how, in response to a difficult and complex world. Unfortunately, this protection sometimes creates a fear-symptom cycle, where fear fuels symptoms, and symptoms create more fear.

For neurodivergent folks, this cycle may be even more pronounced due to our heightened sensitivity to our environment, hyper-connected brains, and our unique safety needs. Black, Indigenous, and People of Colour (BIPOC) and LGBTQIA2S+ communities often experience additional layers of distress, stemming from systemic oppression and the challenges of living in a dominant culture that doesn’t always feel safe for them.

How Can We Heal and Recover?

There are tools and strategies you can use to interrupt the fear-symptom cycle and build a felt sense of safety.

This support will help you honour and shift through these states with more flexibility and create resilience over time, giving you more capacity to heal. It complements conventional medicine treatments as well.

People who recover from chronic illness often report improvements by focusing on:

Lifestyle Shifts: Restful sleep, and adequate and appropriate nutrition. Supporting mitochondria, adrenals, and mast cell stabilization.
Radical Rest and Pacing: Overcoming chronic busyness by slowing down, authentically resting, playing, and creating boundaries and baselines that protect your energy and align with your values. Gradually increase your activity in a safe way.
Community and Support: Building a support network that meets your emotional and physical needs is crucial for long-term healing. Learning to accept and ask for help is key.
Building Safety in the Body: Practices like present moment awareness, slow nasal breathing, cranial sacral massage, vagus nerve stimulation, yoga nidra, safe and sound listening protocol, Pain Reprocessing Therapy, tapping, proper tongue posture, and somatic tracking help restore a felt sense of safety and ease.
Emotional Expression: Accepting and expressing repressed emotions and experiences through expressive techniques like the JournalSpeak method.
Mindset and Thought Management: Learning to identify unhelpful thoughts and manage your thoughts with neuroplastic therapies like CBT and/or DBT (as long as it is neuro-affirming!). Cultivating self-compassion, non-judgment, and boundaries as a way to gently unlearn perfectionistic thinking.
Trauma Processing: Working through current and past traumas in a safe and supportive way using modalities like inner child work, EMDR, or IFS (Parts Work).
Cultivating Joy, Meaning and Purpose: Creating openness to play, gratitude, meaningful experiences and work aligned with personal values, and/or spiritual connection.

Most of these practices do not cost any money. While the ideas may sound simple, they do take a lot of time to learn and incorporate into your life. It is important to discuss your health plans with knowledgeable health care providers

Some people also find supplements and medications to help build capacity and space for healing. Some people dive into reading books, taking courses, or hiring health recovery coaches to help them navigate the journey.

I have created a directory of free and paid sources of information and support. Contact me if you are interested in neuro-affirming health recovery peer mentoring.

I created a collection of digital resources that supported my healing journey - and you can access them here.

Reclaiming Wellness, One Step at a Time

The above techniques are ways to gently reclaim your safety, sovereignty, and resiliency.

This journey is as much about personal recovery as it is about collective liberation and community action. Why is it that so many people experience chronic illness? Think about how our dominant society treats wellness as something individuals are responsible for, and does not prioritize collective care. True wellness doesn’t happen in a vacuum; it requires systemic change, safety, and inclusion in our communities. It’s also about advocating for anti-oppressive and anti-racist systemic changes that create inclusive and resilient communities—because true wellness requires support beyond the individual, it is about the collective, caring for one another. It is a return to interdependence and community care.

What Does this Apply to?

This concept applies to many complex chronic illnesses (not chronic diseases) that may be diagnosed, including: chronic fatigue syndrome, fibromyalgia, post viral syndrome (Long COVID), burnout, anxiety, PTSD, tachycardia, POTS, dysautonomia, hashimotos, vertigo, reynaud’s, psoriasis, chronic allergies, GI disorders, IBS, food sensitivities, multiple chemical sensitivity, endometriosis, tinnitus, Epstein-Barr syndrome, mast cell syndrome, chronic pain including regional pain syndrome, sciatica, back pain (including herniated discs, pinched nerves), TMJ, whiplash, tendonitis, knee pain, carpal tunnel syndrome, repetitive strain injury, myofascial pain syndrome, neuropathy, chronic migraines/headaches, pelvic floor pain and more.

Check the TMS Wiki to see if your condition is part of this paradigm.

Some people with complex and co-occurring disabilities will not ever experience remission or reversal of symptoms, but neuroplastic therapies and nervous system supports can greatly reduce the severity and frequency of symptoms. For example, individuals with EDS cannot change their connective tissue differences, but can experience a reduction in pain and distress.

More and more research is being published on neuroplastic pain and nervous system function, however it usually takes about 10-20 years before research recommendations are implemented by clinicians.

There are various names researchers use to describe these related concepts: tension myositis syndrome, mind body syndrome, neuroplastic pain, hypersensitive nervous system, nervous system disorder, nervous system dysregulation, nervous system dysfunction, vagus nerve dysfunction, cell danger response, psychosomatic disorder, somatoform disorder, psychophysiologic disorder etc. Different practitioners will use various terms to describe similar things from their own perspective. Language is always evolving and we will never all agree what to call it!

Adapted from: The Mindbody Prescription by Dr. Sarno; Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg; Anchored by Deb Dana; The Body Keeps the Score by Bessel van der Kolk; The Body Says No by Dr Gabor Maté; The Myth of Normal by Dr Gabor Maté; The Way Out by Alan Gordon; Unlearn Your Pain by Dr Schubiner and consult with Nicole Sachs, LCSW