My favourite healing resources for Long COVID

In 2021-2023, I was diagnosed and/or treated for the following, due to contracting COVID-19: post viral syndrome, Long COVID syndrome, chronic fatigue syndrome, Postural Orthostatic Tachycardia Syndrome (POTS), severe concussion symptoms & vertigo, severe headache and migraine, visually induced trigeminal dysphoria, tachycardia, adrenal fatigue, food sensitivities, MCAS, SIBO, severe depression, severe anxiety, PTSD, and nervous system dysregulation.

I was prescribed various prescriptions and sent for many tests and bloodwork.

Most forms of treatment that I tried and therapy were self-directed (i.e. my physician was not offering solutions) and out of pocket.

At the time, of my illness, I was working full-time as a lawyer, volunteering, and running a small side-business, and was very anxious and perfectionistic. I dreaded getting sick with COVID, and had a normal-ish infection, but then I had long-term effects for years. You can read that story here. 

Physical treatments

Out of all the many physical treatments I tried, the following were most effective: authentic rest, concussion rehabilitation, cranial sacral massage therapy, energy pacing, and vagus nerve stimulation. 

I joined online health recovery programs for chronic fatigue patients, including CFS Health. I learned to avoid pushing and crashing and instead use the maintain and progress baseline method for properly pacing energy use. 

The rehabilitation exercises from a vestibular physiotherapist help retrain my eyes and brain to operate together again, which greatly decreased my dizziness. 

I was prescribed propanolol to help with the tachycardia but it made my fatigue worse. I tried taking anti-histamines to try to stabilize my mast cells, but then I ended up developing SIBO. 

My naturopath recommended blood tests to help identify what foods were inflammatory to me, suggested supplements to help my adrenals and nervous system, and I went on a modified Mediterranean anti-inflammatory and low histamine diet. This helped a little bit, but to be frank, I was probably under-eating, a common problem in the chronically ill population. 

The Alternative and Inner Work that made the Biggest Difference

While physio, baseline, and rest were incredibly helpful, it became clear that I needed more support. I still had daily headaches, chronic fatigue, soreness, brain fog, memory loss, and intermittent dizziness.

My physiotherapist told me to return in 6 weeks. My doctor said I was doing everything I could to heal, and all I needed was more time to rest. She told me to stop thinking about going back to work. I could not accept this as the final answer.

I desperately did not want to be sick years after infection. I turned my attention inwards and reasoned that since all my Long COVID symptoms were also symptoms of severe anxiety, chronic fatigue, and chronic pain, then treatments for that should help me improve. I thought it could not hurt to try adding in something else. What I did not know was that this would be the hardest work I had ever done!

I did Eye Movement Desensitization and Reprocessing (EMDR) treatment with a psychotherapist to process the trauma of getting COVID and Long COVID. I applied Internal Family Systems Therapy or Parts Work as a way to communicate with conflicting parts inside me. 

I used the Curable app developed for patients with chronic pain[i]. I hired a pain coach from California[ii]. I listened to podcast interviews of doctors, social workers, patients, and researchers. I read works by Dr. Gabor Maté[iii], Dr. Bal Pawa[iv], Dr. Sarno[v], Dr. Stracks[vi], Alan Gordon[vii], Nicole Sachs[viii], and Kara Loewentheil[ix].

I was learning so much about the latest brain and pain science, fascinated with new terms and concepts[x]. I ended up being a sort of translator, sharing this information with others in my online healing programs who were curious about trauma work and specifically, the neurodivergent experience in healing. 

The chronic illness recovery programs I was part of briefly touched on the nervous system and trauma, but I knew this was a key area for my healing (and others too). I began to study the autonomic nervous system and brain and share what I found with others. I ended up combining what I learned with my and my peer's experiences into a nervous system and trauma map, to help navigate through the confusing world of healing. 

Learning to support my nervous system was slow and challenging work, given that my body had been in a prolonged state of stress, and had been used to overfunctioning at a high level even before that. My intense desperation to get better was actually creating a stronger stress response in the body. Instead, the best thing I could was to send my nervous system messages of safety. I started slowly, with daily guided breathwork and somatic tracking.

Mindset Work

I read that anxiety could be treated with Cognitive Behavioural Therapy (CBT), and signed up for two courses online. I found these good for identifying cognitive distortions and increasing helpful thoughts, but generally, traditional CBT is not neuro-affirming and can actually gaslight neurodivergent people, especially with respect to safety. It also is not usually helpful to prioritize at the beginning of healing from chronic illness, as there are many other issues to address first, such as pacing. 

However, I did learn how much mindset work can impact the body. I learned about how our thoughts can have a greater influence on how we feel than our circumstances. We often believe that our thoughts are true simply because they exist. When we challenge a thought, we may find that not only is it not true, it may also be completely unhelpful.

Examining my thoughts, I saw several unhelpful thinking styles, such as all or nothing thinking, catastrophising, minimizing, disqualifying the positive, and responsibility taking. While these thinking patterns had become habits (especially as a lawyer), this kind of perfectionistic thinking puts a lot of pressure on the individual to act a certain way and push through any fatigue or illness, leading to setbacks, chronic symptoms, and slow recovery.

Given that I was socialized as a woman in an imperialist capitalist white supremacist patriarchal society, most of my thoughts served others more than they served me. I had a lot of thoughts about needing to be productive and perfect to be valued, not deserving to rest, putting other’s preferences above my own needs, and the urgency to get better.

The combined effect of this could explain why Long COVID is more prevalent among women and BIPOC communities and/or those who have experienced oppression, discrimination and carry heavy burdens. 

In fact, the members of the health recovery programs I joined had a lot in common: we were all hardworking perfectionists who strive to over-achieve, say yes, be helpful, and put our own needs last. It is possible to slowly adjust our thoughts to be more flexible and supportive to ourselves and others. 

Emotional Expression

Expressive writing is a tool recommended to process repressed emotions and heal out of chronic pain or symptoms. I resisted this idea for months, skeptical that writing about my experiences could actually help. I heard an interview of a Long COVID patient who found marked improvement of all symptoms from doing a daily writing practice called JournalSpeak. I watched videos of Nicole Sachs, LCSW, explaining her daily practice called JournalSpeak[xii], based on her work with pain researcher Dr. Sarno.

Nicole instructs people to write about an adverse experience, stressor, or thinking style for 20 minutes, delete it or burn it, then follow it with a short loving-kindness meditation[xiii]. As a last resort option, I decided to give expressive writing another try. It sounds simple, but it was not easy. It was a profoundly uncomfortable experience, and required a lot of patience.

Over the course of a few weeks, writing became a safe way to dump out repressed emotions in an unfiltered and unapologetic way. I did this for about 6 months. It also helped increase my tolerance for computer use. Sometime the words came tumbling out, other times it was haltingly slow. I had a lot of anger and hopelessness regarding getting sick, not being able to work, and feeling unsupported by the health care system.

I added in short guided meditations and vagus nerve (cranial nerve 10) stimulation exercises[xi]. At first, it was uncomfortable, annoying, and boring. As I became better at noticing and following the sensations of pain in my body, I discerned the ways that pain was a signal or message that I needed to listen to. For example, when a slight soreness in my neck developed or if I got goosebumps, it was a signal that I needed to adjust what I was doing and thinking, and if I ignored those things, I would get a migraine or dizzy spell.

While doing this all this important inner work, my physical symptoms improved. The headaches and brain fog decreased. More memories and vocabulary returned. I began to do more activities and chores around the house. 

Researchers say that energy is always the last thing to come back after chronic illness. I attended a municipal physical rehabilitation program where I increased walking and light weight training in a safe and monitored environment. Internal Family Systems (IFS) or Parts work was especially helpful with safely increasing my activity levels without shocking my system. 

Addressing the Skeptic

It’s not that it was “all in my head” and making it up. The symptoms I experienced were real and physical. All pain is real, no matter the source (and all pain originates in the brain). But the solution was not just in my physical body, it was also in my mind. I believe if I had only followed the advice of family physicians and not sought out my own care team and done my own internal work, I would have been severely ill for years.

It was also important for me to take control of my health, embrace my social supports, follow my intuition and values, and prioritize positive experiences. It took a lot of work to learn to support my nervous system after a life-threatening virus infected my body, but I am glad I was open-minded enough to work on new skills to help myself.

What is all this fuss about the Nervous System?

A lot of researchers and practitioners are suggesting that nervous system support is the way out of chronic illness. It can be be safely incorporated and welcomed into a comprehensive treatment plan. It is challenging, but processing difficult emotions and supporting the nervous system are important skills for every human, as many cultures around the world have known for millennia. The appropriate combination of techniques will be different for each unique individual and/or their community practices.

I will note that many online courses suggest that our nervous systems are dysregulated and we need to fix them, or that our brains need to be re-wired. I believe this type of language is unhelpful, as it gives the impression that something is not working right or that we are broken. Our nervous systems and brains are working perfectly well, just as they were designed: to protect the body from danger. There is nothing wrong with us. You can listen to me on a Post Viral podcast episode where I specifically address this, and how it applies to the neurodivergent experience. 

Our brains and nervous system can, however, get over-sensitized or accustomed to the sympathetic state, and may need help regulating back to the parasympathetic state more often. Neurodivergent people may deal with this to a higher degree because of our highly sensitive nervous systems, greater intake of information, and different safety needs.  

Recognizing my privilege and systemic factors

I recognize that as a thin young white woman with a law degree, my social and economic privilege helped me get support and access to resources that may not be available to all. I was able to [eventually] find a family doctor and other practitioners who listened and believed my symptoms and ordered tests for me. I had funds to pay out of pocket for therapy and supplements. I was able to access sick time and take a medical leave. I had the resources to hire a housecleaner and buy premade meals. I did not have to work or care for children while trying to heal my own body. Many of the resources I found are made by and for people who look and talk like me. These aspects of my privilege certainly benefitted my timeline of healing.

I also learned that the way I was living before meant that if COVID hadn’t knocked me off my feet, something else would have! There were many unlearnings that needed to happen at some point in my life. I am emerging a different person, unshackling myself from the pressures of perfectionism and people pleasing, and opening to gentle kindness towards oneself and respecting my own needs. One of the biggest teachings has been learning to accept and ask for help! 

If you are struggling with chronic illness, I hope you can take comfort in the fact that healing is possible with the appropriate supports. One challenge with healing is that we may never return to life as it was before illness.

The biggest joy in my recovery has been creating and sharing good resources with others who are struggling to see themselves reflected in the information.

My next post will list even more good supports in a directory format!

In peer mentoring health recovery planning with me, I will set you up with helpful resources specific to your learning needs and preferences!

Taking what I have written about, I made a simplified description of the principles of healing. 

 @theparasympatheticpig

 

This does not constitute medical advice, and any new approaches or treatments should be discussed with a knowledgable health care practitioner. 

 

[i] https://www.curablehealth.com

[ii] https://www.painpsychologycenter.com

[iii] https://drgabormate.com/book/when-the-body-says-no

[iv] https://www.mcnallyrobinson.com/9781771645799/bal-pawa/the-mind-body-cure

[v] https://www.mcnallyrobinson.com/9780446675154/john-e-sarno/the-mindbody-prescription?blnBKM=1

[vi] https://www.drstracks.com/tms-resources

[vii] https://www.mcnallyrobinson.com/9780593086834/alan-gordon/way-out?blnBKM=1

[viii] https://www.thecureforchronicpain.com

[ix] https://unfuckyourbrain.com

[x] I recognize that a good deal of this knowledge is not new, and has been known in communities around the world for millennia.

[xi] Other ways to regulate the nervous system include (but are not limited to): cold showers, singing, humming, ecstatic dance, massage, being outside in nature and prayer. Many Indigenous communities around the world engage in these activities as cultural and spiritual practices, recognizing the many benefits. Western practitioners commonly appropriate cultural practices without acknowledging the culture of origin.

[xii] https://www.youtube.com/watch?v=7eHKbhhBxvs

[xiii] https://www.thecureforchronicpain.com/journalspeak  I also completed the first free part of her online anxiety course.

[xiv] The idea is to do only what is appropriate for your body, and gradually increase your tolerance using a maintain then progress method. Graded exposure has been found to be ineffective for CFS. https://www.cfshealth.com/baseline