The Long Haul: A Long COVID Story of Suffering, Survival, and Healing.
Updated: Jul 12
A Life Changed
In the early days of the pandemic, little was known about the effects of the novel coronavirus. Today, we are still learning a great deal about COVID-19 and the impact it is having on the individual as well as the global community. My life became intimately intertwined with COVID-19 when I became sick with the virus in March of 2020. The onset was slow, but progressive. It all started with what seemed like a bad case of seasonal allergies. In hindsight, this causes me to laugh, as historically I have never suffered from such allergies. It began with sinus congestion and fatigue and progressed to body aches and low-back pain that radiated from the base of my spine. It wasn’t until several days later when the anosmia (i.e., loss of taste and smell) set in that I knew for certain this was not a case of allergies. Two days later, testing confirmed I had a positive case of COVID-19.
The following 14 days marked the acute phase of my infection. I slept anywhere from 15-18 hours a day, encouraging my body to take all the rest it needed. Despite my severe state of illness, witnessing the progression of the virus through my autonomic nervous system was fascinating. As the days passed, I could sense the virus moving from my sacrum up through my spinal cord. With this the slow, but steady movement, while still feeling very ill and extraordinarily weak, I could feel myself starting to heal. My fever lasted only for a matter of hours, but the body aches persisted for days. The fatigue was so severe that I was physically incapable of taking more than a few steps at a time before collapsing onto the nearest sofa or chair. My brain was steeping in a stew of inflammation, pressure, and fog. The weight in my chest was present, but not debilitating. Although my lungs felt clear and I could breathe with ease, I could sense that I wasn’t breathing as efficiently as normal—as though the usual exchange of oxygen and carbon dioxide wasn’t happening in the way it should. Many months later, I would learn that my instincts were accurate and my oxygen saturation was frighteningly low. At night my saturation would dip as low as 70%. Beyond the lingering fatigue, in the absence of taste and smell, I struggled to regain an appetite. Much credit must be given to my spouse, who lovingly forced me to eat and hydrate religiously.
The Long Haul
As the days of acute infection passed, I began to regain my strength. A few weeks later, still without taste or smell, I found myself back at work. It wasn’t long after my return to the workplace that I realized I was not as recovered as I thought. It quickly became apparent that my battle with COVID-19 was not over, but just beginning. For the first time in my life, I was gripped by severe anxiety that manifested into panic attacks. The brain fog and short-term memory loss became so frightening that I began to doubt every aspect of my ability to function. My recovery began to take new, unexpected, and unpredictable twists and turns with each passing day. I would hear stories of people recovering from COVID-19, yet I continued to struggle. Was I alone in this fight? Soon enough, the dark cloud of isolation cast an ominous shadow on my life. All the while, I remained personally and professionally curious about this new journey that was unfolding before my eyes. Eventually, the anosmia and sinus congestion subsided, but my recovery was far from over.
Despite my ongoing health crisis, I remained consistently curious about the psychophysiological ramifications of COVID-19. In the study and practice of mind-body medicine, we recognize that there are many things we can do to support our own health and healing. At the time of my recovery, the evidence-base for the impact of integrative therapies on COVID-19 was nonexistent. However, the research is supportive of mindfulness-based practices, such as meditation, guided imagery, expressive writing, biofeedback, and nature exposure on boosting health (in mind, body, and spirit) and supporting the immune system. The medical doctors didn’t hold the solution, and that was okay. I knew that modern medicine was not going to give me the answers I was looking for. So, I set out to take my health into my own hands by implementing a number of evidence-based mind-body practices in an attempt to cope with this novel virus that was ravaging my body. More specifically, my autonomic nervous system. A key component of mind-body medicine is the understanding that we can do things to exert conscious control over bodily functions (e.g., the autonomic nervous system) that were previously thought to operate outside our conscious control, such as our stress-response, heart rate, and blood pressure. What science has discovered over the past several decades is that there are behaviors we can engage in to bring control over the autonomic nervous system, such as meditation, guided imagery, and biofeedback.
Healing in Mind, Body, and Spirit
The ensuing months after the acute phase of my infection were the most difficult of my entire life. As evidenced by the experience of many other long-haulers, there were many moments of feeling as though I would take one step forward and 10 steps back. This recurring backslide in healing is challenging not just on a physical level, but an emotional one as well. The battle for a long-hauler exists on many fronts. As a previously healthy and active individual, not only was I faced with a physical recovery, but a recovery of mind and spirit. Furthermore, I struggled with feelings of isolation, self-criticism, anxiety, doubt, fear, and depression. For many months, I felt as though no one understood what I was going through. Friends, family, and loved ones were compassionate and empathetic for a while, but sooner than later it was assumed that I was better, or (what was even worse) they didn’t understand why I wasn’t. While it may have been unintentional, the constant denial and diluting of my suffering on behalf of others was not only infuriating, but emotionally triggering. The post-viral effects of COVID-19 had grown into a chronic illness and no one knew why or how. Medical tests continued to come back normal despite my dangerously low oxygen saturation levels. My heart rate continued to skyrocket over the simplest of tasks. I was physically weak and emotionally raw.
After nearly five months of navigating my post-COVID symptoms, I began to experience turn for the better. Finally, it felt as though COVID-19 was entering into the rear-view mirror. There was pain and suffering in my recovery, but there was also beauty. Out of my struggle and suffering grew a beautiful bouquet of personal grown and professional discovery. My life mission became clear: to help other Long COVID patients cope with and manage their symptoms so that they can regain control over their health.
A Message of Hope
It wasn’t for another several months that I truly felt complete in my recovery. The year 2020 can be classified as the year I climbed a metaphorical mountain that was my recovery from COVID-19. Nearly one year later, on April 1st, 2021, I climbed a literal mountain in celebration of my restored health. One year ago, I struggled to climb a single flight of stairs, and 12 months later, I climbed the equivalent of 25 flights of stairs on my journey up the mountain. To this day, I seek to spread a message of hope to all my fellow long-haulers. I strive to embody and preach the message that recovery IS possible. It is with the absolute certainty and unwavering conviction that I boldly identify as a former Long COVID patient, a former long-hauler. COVID-19 has truly made it into the rear-view mirror and grows smaller and smaller in the distance.
If given a magic wand, I would not wish that things would have been different. In fact, I hold an abundance of gratitude in my heart for my Long COVID journey, for it is because of that journey that I discovered the essence of who I am and the person I am meant to be in this world. It is because of my experience, that I now have the opportunity, nay, the obligation, to help and serve others on their journey through Long COVID. I know what it is like to suffer and I know what it is like to heal.
Long Covid Support
How am I helping Long COVID patients? I have partnered with Aila Health to deliver personalized and integrative care through our digital health platform. Aila Health is an integrative virtual health platform that provides personalized health and support resources to autoimmune and chronic illness patients. With the Aila app, patients can track all their health information in one place, connect with a community of Long Covid warriors, work with an integrative wellness coach, and schedule appointments with post-COVID health care providers.
Join a Community of Warriors
Want to be a part of the conversation? Join our growing Aila Health Long Covid community HERE. We also offer free live group support for people living with Long Covid. Join me for our weekly Wednesday meetup from 9-9:30 am PT (join for free in the Aila Health app). We come together as a community to share stories, connect with experts, and find healing. Learn More.
Research for Long COVID
At Aila Health, we are passionate about advancing the research for Long COVID care. Interested in taking part in our research efforts? Click here.
About the Author
Shannon Sims, PhD, is an integrative wellness coach and mind-body specialist with Aila Health where she focuses on supporting Long Covid and other chronic illness patients in their journey to greater wellness. Dr. Sims is also a Professor at Saybrook University’s College of Integrative Medicine and Health Sciences in the department of Mind-Body Medicine.