Hope in Healing.
My Story
By, Johanna Rayl
“Seek gentleness in everything you do – Be gentle with yourself when you feel terrible, when you feel great, when you did too much, when you skipped something… No amount of gentleness and self-compassion is too much.”
I used to think my Chronic Fatigue Syndrome (CFS) story began with a Covid infection in April 2020, but now I see it as beginning much earlier. From a young age I was working hard to succeed in all of the things I did – seeking the perfect report card, the best piano recital performance, and top athletic honors. I was burning the candle at both ends of the stick by middle school when I started training and competing year-round in swimming. A typical high school day involved a 4:30 alarm for morning swim practice, a school day of honors classes from 7-2, a short homework and snack session at home, a 3-hour afternoon practice of swimming and weights, more homework, dinner, and an early bedtime to rinse and repeat. It was hard, and only somewhat fun, but it landed me in my college of choice and on the varsity swim team there. I concluded that hard work always pays off.
College was comparatively easier with a much less demanding schedule and more time for both a rich social life and a number of amazing friendships to grow. My overworking tendencies did show up in the pool, where I swam every practice like it was a race and arrived at most Saturday meets depleted and far slower than what I was capable of. I left college having adored every part of my time there, and with only one regret – that I didn’t push myself harder academically.
Taking my one regret to heart, I launched myself into a demanding and rewarding research position in Chicago. I rejected the old athlete adage that you can only pick two choices among school, sport, and a social life. I was going hard at all three -- working long hours, launching myself into running and triathlon, and seeing everything Chicago had to offer. I applied to PhD programs in Economics and again led by my collegiate regret, choosing the program I felt would challenge me the most.
I was under-prepared for the first year coursework of the program, having majored in neither economics nor math as an undergrad, and was anxious about the qualifying examinations at the end of a year from before day one. My anxiety only built from there as the first months of classes confirmed that I had a huge amount to catch up on if I wanted to pass and remain in the program. I plowed ahead assuming that, like all other challenges I took on, I’d manage. In late November I had my first panic attack. I didn’t know what it was and spent an incredibly long and traumatic night alone in the ER, believing sincerely that I was dying. I wish that were hyperbole.
Unfortunately, this was only the beginning of a long year-and-a-half run with regular panic attacks and extreme anxiety. In some regards things improved – I learned how to stop the most extreme panic attack symptoms. But a moderate-grade constant level of extreme anxiety replaced them. I was living in a cloud of dizziness, hyperventilation, distrust of my body, and fear of failure come the end of the year.
By the time I got my first Covid infection, almost a year after that school year ended, I was on the mend. I was out of the PhD program after the year and part of the way through a year of research and recovery. The regular panic attacks were gone, but a large amount of health anxiety was left. The unpredictability of the panic symptoms and the trauma of that night in the ER left me fearful of every sensation in my body. I was running well, training a lot, and still extremely healthy by many conventional standards, but stressed far beyond what I could appreciate at the time.
The Covid infection arrived slowly. I thought I was just training too much and started taking more rest days. The more I rested the worse I felt, until I was eventually in bed for a week, sleeping 18 hours a day. It felt like no virus I’d ever experienced before. After about two weeks and one long night of an earsplitting headache, things improved rapidly and I was up and about again. I joined a home strength workout on zoom with friends, which left me dizzy and disoriented, but ready to try again tomorrow. I was feeling OK going back to work and daily activities, but all my attempts to resume exercise failed with disconcerting shortness of breath.
Over the next few months I went through intervals of feeling pretty well, albeit unable to exercise, and weeklong bouts of extreme fatigue where all the symptoms of my original infection came back. I was able to take it easy at work and focus on diagnosing the scary and unexplained symptoms I was experiencing. Sitting up in a chair would bring my heart rate into the 90s and low 100s, and standing or walking left me out of breath. I did a battery of workups with general practitioners, cardiologists, allergists, and immunologists to try and find a diagnosis. Long Covid was barely breaking into the news and many doctors weren’t ready to use this as an explanation. I was convinced I had Long Covid based on other patient descriptions of their post-covid symptoms, but every appointment left me questioning my own sensations.
I heard the symptoms dismissed as a small dip in mental health – just the regular stresses of a global pandemic. I heard that Chronic Fatigue Syndrome was not really a real illness – just something with which to diagnose difficult patients who complain of fatigue. I heard that I was perfectly healthy. I heard all my strongest intuitions about my own body discredited by the professionals, and no alternative explanations given in their place. By the end of the summer, I joined some months-long waitlists at newly-established Long Covid clinics, and otherwise gave up on Western medicine.
I was also starting to feel pretty good. The summer of rest had begun to pay off and I was headed into the first year of a new PhD program feeling on the mend and grateful for another go at the PhD in a better academic environment.
I wonder if, had I remained on this path of R&R, I could’ve kicked Long Covid after half a year. Instead, schoolwork ramped up and the energy required became more than what I had. My progress deteriorated and reversed, and I finished the term extremely depleted. I was being treated with acupuncture, herbal medicine, and physical therapy. The first two seemed to be helping a bit and the third was decisively counterproductive. I settled into a very low level of health that would continue for well over a year. Illness took hold of every part of every day, sparing not even my sleep. Big trips and outings became enormous stressors as I navigated living with a miniscule energy budget, and even trips to the laundry room downstairs were daunting.
I also entered a physical and emotional cycle that would repeat itself probably a hundred times over that period. It began with a couple of good days. I’d use that extra boost of energy to get more work done, take some walks or practice yoga, and do something social. I’d feel optimistic about being able to recover and pin all my hopes on those improved physical sensations and the lightening of fatigue. Then the extra energy expenditure would catch up with me and I’d decline for a few days until I reached one where I’d need to cancel everything and stay in bed all day. This was emotionally devastating, no matter how many times it happened. Yet again, I couldn’t seem to stay on that path of improvement. I’d lose all hope of recovery and imagine the implications of a long-term future at 20% energy. I’d regret the walks and fun things I did when I was feeling better. These days were my most intense experiences of grief.
With no outlook or guidance from medical professionals about a recovery path, everything was pinned to the only signals I had to follow: these daily symptoms. This is an experience that folks with chronic illness know intimately, and which is almost prohibitively difficult to understand otherwise.
It is with this in mind that I make sense of perhaps the most painful part of this journey: the feeling of isolation. We hope to find ourselves in communities that give extra love and support in sickness. And I believe I am in one that hopes to do this. But these years were extremely lonely. A certain set of illnesses and injuries come with a strong degree of societal understanding, and with that, compassion. Others are much less visible. I had mixed experiences joining online support groups. I felt that everyone in these spaces, including myself, was there looking for the support that, in the end, could only feel truly soothing coming from loved ones. I didn’t know how to maintain strong relationships after my usual bonding activities were off the table. And I felt that my community was content to wait at a distance until I got better, an outcome that was very uncertain.
A constant light through these circles of grief was meeting my partner. When I was disappearing from my community in Chicago into a pit of fatigue, he was coming with me. As I lost the ability to exercise, work, and show up for friends, I felt like I was leaving myself. But at the same time I had a person who knew me only in sickness, and who I felt saw me. This was the most powerful possible reassurance that I was still there.
It was after about 16 months of illness that I found the resources that eventually guided me to recovery. I was as desperate as ever and still on the constant search for answers. I decided to focus my searches around finding evidence of people who successfully recovered from CFS, knowing that CFS had been around long before Covid. My “CFS recovery” searches led to Dan Neuffer’s website, CFS Unravelled. I listened to interviews with many folks, some far sicker than me, who made full recoveries. I learned more about dysautonomia and the idea that dysregulation of the autonomic nervous system might be driving all the hundreds of CFS symptoms. Although worn down by the countless doctors’ appointments, thousands of dollars spent, and many alternative approaches that repeatedly let me down, I knew right away that I had found real answers. I learned of several online programs designed to help people heal from CFS by addressing nervous system dysregulation, and I launched in on Dan Neuffer’s program, ANS Rewire.
Buying health advice online would’ve been out of my comfort zone in other circumstances, but I leapt at the chance to start this program. I’d never heard of someone speak about CFS in a way that felt so true to my symptoms. As I learned more about the nervous system and dysautonomia, I noticed new connections between activities and symptoms for the first time.
For months I’d been meeting weekly with a therapist to discuss one of the greatest challenges I was facing: whether to believe that I would eventually recover. On the one hand, to decide recovery might be impossible could be realistic, protecting me from the heartbreak of seeking recovery for years longer, only to find it impossible. I’d read online that the recovery rate from CFS could be as low as 5%. I could seek accommodations and try to carry forth. On the other hand, the thought of remaining at this level of health forever was unbearable, and I wondered what I would hold myself back from if I didn’t have hope. The new information I’d found was so compelling and helpful that I quickly decided I, too, could fully recover. This belief was essential to the recovery process.
I covered all the materials in the program that fall and noticed improvements, but was still in school and unable to fully devote myself to recovery. I decided to take full medical leave beginning in January, 2022. Besides following a nervous system regulation program, this was the single most important thing I did for recovery. It felt like an enormous sigh of relief. I was finally granting my body what it had been asking of me for almost two years: a complete break. I promised myself I’d remain on leave as long as my body needed. If CFS and dysautonomia are the autonomic nervous system going into overdrive fight, flight, and freeze modes, giving myself permission to rest was the first invitation back into balance.
I structured my days around following the programming, removing triggers of autonomic arousal, finding fun and relaxed activities, and generally doing whatever my body wanted. For about two months this meant sleeping and reading in bed all the time. I was actually feeling even more tired for a while, which was my body finally beginning to relax. It was still extremely hard. I had worse days and they still unleashed the powerful cycle of grief, but I got better at being compassionate towards these emotions and keeping faith in recovery. By March I was substantially stronger. I kept taking it easy most days but tried new things periodically. I decided to remain on medical leave for the spring quarter, which was again a very important decision. A healing deadline is quite possibly the strongest signal to the nervous system that it should go into panic mode.
As my healing progressed, I realized that I could learn a lot more than just how to recover from CFS. I reflected on how long it took me to grant my body the rest it was begging for, the volume of sustained stress I had endured for years before getting Covid, and the reasons behind choosing these paths. I began to see my longtime goal of chasing a competitive academic career differently, as it suddenly became entirely unappealing. I looked at how many of my activities and successes were driven by achievement and recognition, and how willing I was to suppress real needs in the name of the next accomplishment. After just some weeks of asking these questions I couldn’t believe how differently I was seeing myself, my needs, and my goals. I was thrilled to read more about the effects of chronic stress on the body, the biochemical pathways of emotions, and generational factors affecting anxiety, perfectionism, and other cognitive biases.
I became grateful that my body forced me to learn these things, which made me even more certain I’d make a full recovery.
My progress took off at an astounding rate around April and continues to this day, as I get to start doing all the outdoor activities and sports my heart desires. I don’t know exactly what my future holds as an athlete, but I know it will be the most fun I’ve had. I have new career and balance goals that will fulfill the actual needs that I tried to meet with achievement, and I have more clarity on what I want out of life than ever. If I stray from this path again, my body will tell me, and I’ll know how to listen.
I began sharing my recovery experience on Instagram about eight months ago. I figured that if even one person’s life improved as a result of something I shared, it was more than worth sharing. In fact, I now think I’ve never done anything more impactful.
Here are my top recovery tips. You can find a lot more where this comes from on Instagram @longcov_cfs_jo.
Don’t set recovery deadlines – This is about letting your body know that it’s safe and can take all the time it needs.
Learn about dysautonomia – Recovery programs like ANS Rewire, Gupta Program, and CFS School are great options, but cheaper alternatives like the Curable app or books work too!
Let the bad days happen – You’ll have them at every stage of the process, they’ll come with unpleasant emotions that require their own space, and then they’ll pass. They don’t mean you’re not recovering!
Get to know your fears – I recommend listening to the Tell Me About Your Pain podcast by Alan Gordon and Alon Ziv, episode “How Do I Fell My Emotions, And How Can That Help My Pain?”. Fear is fueling that sympathetic nervous state and it’s important to talk back!
It may not be time to exercise, but it is time for movement! – Exercise can be a loaded word, especially for us athletes. Abandon exercise goals in favor of movement goals. Movement should always feel good and can be as simple as laying on the ground and “windmilling” your knees side to side a few times, or taking a big overhead stretch.
There’s no perfect set of steps to heal – Perfectionism is part of that defensive state you want to get out of. Just make a recovery plan that feels feasible within your personal, financial, family, or other constraints, execute it (imperfectly), and let time do the rest. Trust that you’re on the right path. (“Am I doing it right?” is just fear, see tip #4)
Save up energy early on – Eventually it’ll be time to try new things and be adventurous, but the beginning of recovery is for letting your body have all the energy possible for healing.
Last and perhaps most important, seek gentleness in everything you do – Be gentle with yourself when you feel terrible, when you feel great, when you did too much, when you skipped something in your recovery plan, when recovery feels impossible, and when it feels imminently doable. No amount of gentleness and self-compassion is too much. The first step in rebuilding trust with your body is openly listening.
I spent years resisting my body’s messages. I might’ve listened to a doctor, but not my own symptoms and sensations. Recovery from CFS began a lifelong journey in listening for the symptoms, emotions, and thoughts that tell us how to find health – not the cursory physical performance and normal-lab-range brand of health, but the comprehensive and holistic kind of health that reveals itself in our mental wellbeing, our microbiome, our life’s level of balance, and our ability to feel and process the full spectrum of emotions in attunement with others.
For sufferers of CFS, dysautonomia, and Long Covid, I say look for this invitation to listen. For practitioners treating these patients and medical researchers, I say the same. Patient-driven recovery programs like the one I used have guided thousands or more back to full health by helping them reregulate their nervous systems. This offers a compelling hypothesis for crucial research that asks why these programs are working, and how medical care can be developed.
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