Life Derailed: My Unexpected Journey Through Long Covid

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Some nights, as I dream, I’m transported back to a time when I was healthy and energetic. I briefly experience what it’s like to live without the shadow of chronic illness. But as morning comes and consciousness returns, the familiar dull ache in the front of my brain and bone-deep fatigue pull me back into my new reality. I’m no longer the person I used to be. For the last two and a half years, I’ve lived with what’s known as Long Covid, an illness that has reshaped my life.

Life Before Long Covid

Prior to Covid, I was healthy and athletic. I had never had any significant illnesses or medical issues. Shortly before the pandemic, I ran a half marathon in 1 hour and 16 minutes and qualified for the USA Triathlon Age Group National Championships.

In the summer of 2021, life was great. I was 26 and had recently moved to San Francisco to start a new job as a software engineer at Square. This was an exciting career transition, and I threw myself into my new role with enthusiasm. I excelled in my new job, and genuinely enjoyed the work and my teammates.

Outside of work, I was taking advantage of life in the city. I joined a recreational soccer league, and was making new friends through work, sports, and dating. My social life was centered around being active with friends. Every day, I either ran, biked, climbed, worked out at the gym, or played soccer. I was in a great spot, both personally and professionally, and I felt like the future was brimming with potential.

Despite the ongoing pandemic, I was not concerned about Covid. I had been careful during lock-down and got the initial two Covid vaccinations in early 2021. There was a mainstream narrative that the young, healthy, and vaccinated had little to worry about from Covid, and I, along with my social circles, certainly bought into this. So, I wasn’t overly worried when I got Covid in August 2021.

The Onset of Illness

I had a fairly mild acute infection, including headache, fatigue, and loss of taste and smell that lasted about a week. During this time, I continued to work full-time remotely and to exercise outdoors (including a few 5+ mile runs). When I tested negative, I resumed my usual, active lifestyle.

In the following weeks, I felt unusually tired and mentally groggy, but I attributed this to poor sleep and stress at work.

Then, about three weeks later, my body went haywire. I had just returned home from the climbing gym when I felt a wave of fatigue and mental grogginess come over me. I tried to carry on with my evening, but the more I pushed through, the worse it became. I went to bed very early, hoping things would be better in the morning.

They weren’t. Over the coming days, all sorts of strange symptoms began to emerge: a persistent headache, a mental grogginess that felt like an extreme hangover, a sense of derealization, blunted emotions, a flu-like malaise, fatigue that intensified with exercise, heart palpitations, shortness of breath, internal tremors, skin rashes, blurred vision, and food intolerances. I had no idea what was happening and I was freaked out. I had never experienced any of these issues before.

Seeking Answers

I started seeing doctors to find answers. The first doctor I saw, my primary care provider, did a physical exam and ran a set of basic lab tests. When the results came back unremarkable, I was told there was nothing wrong with me. When pressed about the seriousness of my symptoms, he suggested the stress of lockdowns may have had a psychological effect on me. He refused to run additional tests.

Needless to say, I changed doctors. However, I found that dismissal, downplay, and reluctance to order additional tests were common in my quest for treatment. Doctors seemed unsure how to diagnose my wide array of symptoms, and when standard tests came back normal, they sent me on my way. What I needed a doctor to say was, “I don’t know exactly what’s wrong with you or how to treat it, but I’m willing to work with you to figure it out.” That didn’t happen.

Early on, I learned that I had to advocate strongly for myself when seeking medical care, even though I had little energy for the task. Without ongoing, concerted pressure, most doctors sent me home with no diagnosis, treatment, or follow up. So I did my own research, sought new doctors, and pushed for tests. I paid out-of-pocket for care that was being denied by insurance.

As a result, over the next three months, I saw multiple specialists and had numerous tests. I saw a cardiologist, a pulmonologist, a neurologist, and a rheumatologist. I had an EKG, a Holter monitor test, a chest X-ray, a brain MRI, a Montreal Cognitive Assessment Test, and countless blood tests. Based on these tests, I was told I had tachycardia (a fast heart rate), delayed recall on cognitive tests, signs of ongoing immune activation and dysregulation, and markers of vascular inflammation. I was diagnosed with Long Covid, but given little in the way of treatment.

This diagnosis felt like good news and bad news. On the one hand, it confirmed what I expected and eliminated potentially more deadly diseases. On the other hand, the more I researched Long Covid, the more ominous this diagnosis felt. There were, and remain, no proven treatments. The prescription from my doctors was to wait. When asked how long, answers ranged from months, to years, to “we just don’t know.”

Online, I found large communities of people suffering from Long Covid with devastating stories describing a wide range of symptoms. Among them, I discovered many stories similar to mine: healthy person has a relatively mild Covid infection; a few weeks later numerous new and persistent health issues emerge; doctors don’t know how to help (and often gaslight them); person must adjust to a new highly compromised life governed by illness; and their condition persists over time.

Adjusting to My New Reality

As the months passed, and I didn’t get better, I grieved my old life. Sports, adventures with friends, and dating were replaced with doctor visits, medical research, treatment experimentation, and lots of time in bed. I went from an energetic, motivated, and happy person to a dull, unenthusiastic, and frequently bedridden person. I felt like a shell of my former self.

In the beginning, I tried to ignore the fatigue and exercise anyway. I even came up with a motto to help push myself through the pain: “F**k the fatigue.” However, I quickly discovered this was a recipe for disaster. Every time I tried to push through, I was overcome with a crushing exhaustion and a full-body malaise that lasted for days. Other symptoms would flare up too: debilitating brain fog, a racing heart, and breathlessness.

Losing exercise was devastating, but the cognitive effects were even worse. Tasks that were once quick and effortless, now felt slow and exhausting. It was as if I was thinking through molasses. Things didn’t come to me as quickly. Often my mind was blank, when before it was teeming with ideas and images.

This was most challenging in social situations. I could no longer be my easygoing and witty self, which I once took for granted. It was difficult to carry conversations, think on my feet, or be imaginative. My emotions also felt muted. The combined result was a noticeable dampening of my personality and a more subdued demeanor in social interactions. Even on days when I felt I had enough energy to socialize, I was embarrassed by these effects, leading me to withdraw.

Many people in my life had a hard time understanding what I was going through, even when I tried to explain, so I felt somewhat abandoned.

I tried to be optimistic, and when asked, I would tell people I was a little better. But inside I had a growing sense of despair. It felt like my future was slipping away. When I looked at old photos of myself, I was filled with grief and bitterness. It was like looking at a stranger. Many of the things that had made me who I was — my intelligence, my sense of humor, my physical abilities, my hobbies, my performance at work, my friendships, my positive outlook on life — were diminished. Long Covid didn’t just affect my health, but my identity as well.

Before Covid, I took my good health for granted. In my new reality, I began to realize and experience an unfortunate side of American culture: those who are sick or disabled often find themselves alienated in a society where health equates to virtue and illness to personal shortcoming. I struggled to maintain a sense of self-worth as I adjusted to my new normal.

Most of my daily energy was spent trying to make it through work. I pushed through the fatigue and cognitive impairment as best I could, taking breaks whenever possible, and collapsing on my bed at the end of each day. Previously, I excelled at and enjoyed my work; now I dragged myself through each day and was acutely aware that my performance was suffering.

A few things helped me keep my job during this period. First, I worked remotely and was able to take multiple breaks throughout the day. Second, my boss was supportive of my situation and let me temporarily ease back on my workload. And lastly, my work was mostly coding. For some reason, my dysfunctional brain was more capable of performing left-brain tasks like coding, especially when done alone and at my own pace. Meetings, on the other hand, were challenging for me, and I avoided them at all costs.

Treatment Trial and Error

Because I constantly felt sick, I was desperate to find anything that would help me feel better and improve my day-to-day functioning. I adopted a regular schedule of 9–10 hours of sleep each night with multiple naps and rest periods throughout the day. I experimented with diets, supplements, and various therapies. For over a year, I severely limited my diet by cutting out sugar, caffeine, alcohol, gluten, dairy, red meat, and grains. Later, I experimented with Keto, Paleo, and anti-inflammatory diets. I tried over 50 different supplements, none of which seemed to help.

I also tried multiple therapeutic treatments and alternative practices, including Hyperbaric Oxygen Therapy (HBOT), ozone therapy, intravenous vitamins, intermittent fasting, extended fasting, graded exercise therapy, cognitive behavioral therapy, chiropractic treatment, acupuncture, various types of massage, cranial sacral therapy, sauna, ice baths, meditation, yoga, Vagus nerve stimulation, red light therapy, and cryotherapy. Some of these, such as HBOT, fasting, and ice baths, provided minor temporary improvements, but none provided significant or lasting relief. Not a week went by that I was not trying some form of therapy, supplement, or medication to ease my symptoms.

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Some of the supplements and medications that have accumulated over the course of my illness.

Navigating Work and Insurance

Ten months into my Long Covid journey, with minimal improvement, I was finding it increasingly difficult to keep up at work. I had recently been assigned to a major project which required me to lead high-stakes meetings. My performance was suffering, and the extra stress was taking a toll. On my doctor’s advice, I decided to take a medical leave of absence from work to eliminate stress and focus on my health.

Short-term disability insurance exists for exactly this type of scenario. It helps with the financial burden when employees are unable to work, due to an illness or injury, by paying a portion of their salary to offset this burden. However, I did not anticipate how challenging it would be to qualify, because the insurance company would not recognize my situation as a disability. After a months-long application and deliberation process, I was denied on the grounds that my medical documentation didn’t prove that my condition “rose to a level that disabled [me] from performing normal duties of [my] job.”

In response, my father and I spent multiple months compiling an appeal — a 50-page packet of doctor notes, medical exam results, work emails, and an essay detailing the progression of my illness. Being forced to do all this extra work to prove that I wasn’t fit for work felt ridiculous, and I wondered how other people with Long-Covid were managing this, especially if they had no help. My father carried the brunt of it, and we kept pushing, because there was a lot of money on the line. After two extensions to the deliberation process to consult with medical experts, my insurance eventually approved my appeal for short-term disability. I was relieved, yet this was another unexpected hurdle in the already exhausting process of managing my illness.

Gradual Improvement

As much as possible, I dedicated the three-month leave to intensive rest. This meant lying in bed sleeping, listening to audiobooks or music for hours, or occasionally going on light walks. Although monotonous and isolating, this seemed to be a turning point in my illness, and I started to see minor improvements.

Over the next year, I continued to renew medical tests and experiment with various medications. While no single root cause revealed itself, several abnormalities emerged. Tests repeatedly showed signs of an overactive immune system and immune exhaustion. I tested positive for small, widespread blood clots and am now on anticoagulants. Fragments of the Covid virus known as spike proteins were detected circulating in my blood two years after my acute infection. Several tests also pointed to underlying autoimmune processes. As I delved into the research, I discovered that these findings were showing up repeatedly in Long Covid studies.

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Immunofluorescence microscopy tests showing micro-clots in my blood.

I eventually found a few Long Covid-literate doctors, the best of whom I pay for entirely out of pocket at a private clinic. Thanks to these doctors, relentless experimentation with treatments and medications, and learning to better manage my condition, I partially improved. Comparing year one to year two, I went from no exercise, zero social life, and barely hanging on at work; to long walks and easy bike rides (on good days), occasionally meeting with friends, and work being more manageable (though still challenging).

An Ongoing, Invisible Battle

In early 2023, I had the opportunity to leave my job to work full-time on a startup with two friends. This had been a dream of mine for many years, and I decided to pursue it to the best of my ability despite my ongoing health issues. There was a lot of work involved, but being one of the founders allowed the flexibility I needed to work effectively while managing my ongoing illness.

My ability to launch a new startup is one example of the confusing aspects of this illness when viewed from the outside. I had a great job at Square, and then started a new business, known to be a demanding endeavor. Then we got accepted into the Summer 2023 Y-Combinator batch, a highly competitive startup accelerator. These typically aren’t things a sick person is able to do.

What people don’t see is how difficult, and frankly often miserable, these activities were for me, and how impacted my performance was. I did little else outside of work besides rest and attend doctor appointments. For most new founders, going through the YC program is an incredible experience of meeting fascinating people, making potentially lifelong friends, and attending unforgettable events. Yet the experience for me was mostly stressful and uncomfortable. I avoided many events, and those I did attend, I did my best to play the part of a bright-eyed and enthusiastic founder, all the while counting down the time until I could crawl back into bed.

To add to people’s confusion, I don’t look sick. These days, in a social encounter, I can usually pass as a normal, healthy person. As a result, people assume I’m fully recovered, or that any remaining effects must be inconsequential. Some may even believe I exaggerate my illness. The reality is, I don’t fake being sick; I mostly spend my time faking being well. My life is still compromised in many profound ways.

One Long Covid patient aptly described the illness like this: It is a very isolating illness. It upends your life, but on the surface, you look okay. You see people wondering, “What’s so bad?” You can see that they do not know what to say or what to do for you. You see people’s sympathy wane over time, unsure of how to support you when it’s been going on for so long. People move on with their lives. They put the pandemic behind them. They stop asking you how you’re doing. All the while, you continue to fight an invisible battle.

Present Day

As of March 2024, I’ve had Long Covid for 30 months.

I’ve spent over $50,000 out-of-pocket on medical bills.
I’ve seen 27 different doctors at 74 appointments.
I’ve had my blood drawn 45 separate times.
I’ve had two X-rays, five MRIs, an EKG, an ultrasound, a Holter monitor test, a sleep study, a pulmonary function test, a skin biopsy, and more.
I called an ambulance once.
I have tried 25 prescription medications and over 50 types of supplements, multiple diets, and dozens of therapies.
Each week has been filled with medications, supplements, and doctor appointments.

This is not how I had planned to spend my time and money in my late twenties.

The good news is that I’ve seen gradual improvements with time. I’ve improved the most physically and can now do light workouts at the gym, short jogs, and occasionally go climbing. I still deal with a pervasive fatigue and flu-like malaise, but I’m able to push through it in moderation without exacerbating my symptoms. I can also now enjoy a more varied diet, drink coffee, and occasionally have small amounts of alcohol without aggravating my symptoms. These changes have greatly improved my quality of life.

However, cognitive dysfunction remains my most persistent and disruptive symptom. I still have a constant ache in the front of my brain, mental fatigue, and a dulling of my cognition and personality. Not one day goes by — not one half-hour — that I do not feel these effects.

Some days, Long Covid feels manageable. Others, it feels like an overwhelming burden. I long for the vibrance and breadth of my old life. I miss the friends and family who have moved on. I grieve the loss of so much time in the prime of my life.

A further barrier to resuming my previous life is the looming threat of getting Covid again. Despite how tired I am of taking precautions, the risk that another infection could worsen my symptoms or prolong my illness is a proven possibility, based on the experiences of other Long-Covid patients. This is not a risk I can ignore. The fact that most other people have stopped taking precautions against Covid, and some don’t even isolate when sick, further heightens the risk for those of us whose immune systems are compromised. I don’t know when, or how, this might change. For the foreseeable future, it remains another obstacle I face.

Despite this, I am hopeful that I will someday make a full recovery. Even though progress has been excruciatingly slow, the fact that I’ve improved over time is encouraging. Sadly, there are many others suffering with Long Covid in far worse situations than mine, both in terms of symptoms and life circumstances. Even at my lowest moments, I remind myself that I have much to be grateful for. I have a supportive family. I have good health insurance. I’ve been able to access the best possible medical care. I’ve been able to work remotely and maintain a good job. And I’ve been able to manage my mental health, and remain optimistic about the future.

By sharing my story, I hope to spread awareness of the reality of Long Covid and to emphasize its seriousness. Here are some basic facts that many people do not know:

Before Covid, I had many hopes and dreams. I dreamed of founding a successful company, of traveling the world with someone I love, of buying a house by the water, of starting a family, and of having many more exciting adventures with friends. While I still want those things, they’ve faded into the distance. Now, I hope to become symptom-free, even for short periods of time. I dream of feeling energetic again, of having my brain work like it used to, of spending time with friends and not feeling hindered by my health. I dream of becoming my previous happy, healthy self.