What I actually mean when I say I have Long Covid

Let me break it down

Photo by Jubbar J. on Unsplash

It’s getting more and more clear to me that when I use the term “Long Covid,” people that don’t already have it or aren’t Covid Cautious/Conscious (CC) don’t have any idea what I’m really talking about.

Part of the problem is that Long Covid (LC) is like a snowflake. Every single case is unique. Many have similarities when it comes to their symptoms, but there are simply so many different manifestations and combinations of symptoms, that it makes understanding what LC is truly difficult unless you’re living it.

In an attempt to help clarify and unify the terminology and conceptualization around LC, the National Academies of Sciences, Engineering, and Medicine (NASEM) put together a Long Covid working definition this past year. Per NASEM:

Long COVID (LC) is an infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems.

Some other critical dimensions of Long Covid, according to NASEM (I’ve added bolding to parts that are directly relevant to my experience with LC):

LC manifests in multiple ways. A complete enumeration of possible signs, symptoms, and diagnosable conditions of LC would have hundreds of entries. Any organ system can be involved, and LC patients can present with:

• Single or multiple symptoms, such as: shortness of breath, cough, persistent fatigue, post-exertional malaise, difficulty concentrating, memory changes, recurring headache, lightheadedness, fast heart rate, sleep disturbance, problems with taste or smell, bloating, constipation, and diarrhea.

• Single or multiple diagnosable conditions, such as: interstitial lung disease and hypoxemia, cardiovascular disease and arrhythmias, cognitive impairment, mood disorders, anxiety, migraine, stroke, blood clots, chronic kidney disease, postural orthostatic tachycardia syndrome (POTS) and forms of dysautonomia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), mast cell activation syndrome (MCAS), fibromyalgia, connective tissue diseases, hyperlipidemia, diabetes, and autoimmune disorders such as lupus, rheumatoid arthritis, and Sjogren’s syndrome.

Finally, in their very useful one-pager, they list out a few key features of LC (I’ve added bolding to parts that are directly relevant to my experience with LC):

• LC can follow asymptomatic, mild, or severe SARS-CoV-2 infection. Previous infections may have been recognized or unrecognized.

• LC can be continuous from the time of acute SARS-CoV-2 infection or can be delayed in onset for weeks or months following what had appeared to be full recovery from acute infection.

• LC can affect children and adults, regardless of health, disability, or socioeconomic status, age, sex, gender, sexual orientation, race, ethnicity, or geographic location.

• LC can exacerbate pre-existing health conditions or present as new conditions.

• LC can range from mild to severe. It can resolve over a period of months or can persist for months or years.

• LC can be diagnosed on clinical grounds. No biomarker currently available demonstrates conclusively the presence of LC.

• LC can impair individuals’ ability to work, attend school, take care of family, and care for themselves. It can have a profound emotional and physical impact on patients and their families and caregivers.

While these are incredibly helpful descriptions and overviews, I think it still remains too theoretical for most people to comprehend what living with LC might be like. Especially people who have never before experienced any sort of disability (like me prior to LC). Even 95% of my doctors don’t understand what Long Covid really is when I tell them I have it, how broad it can be, how severe it can be, and how it can manifest so uniquely in different people.

Of course, as I mentioned, everyone experiences LC very differently. Some people may only have one symptom. Some may have dozens. Some may have mild LC, while others have such severe LC they are completely bedbound. Some may recover from their LC, and some may die because of it.

This piece details my personal experience of Long Covid to help paint a picture of what life is like for me, and can be used as a starting point in trying to understand others’ LC experiences, but should not be considered representative of every person with LC. Additionally, management of LC significantly depends on one’s financial resources and socioeconomic status, availability of family/spousal/friends’ support or care-giving, the ability to obtain disability, access to medical professionals (and medical professionals who believe LC is real), etc. The point is that every single case is unique, but I’d like to invite you to dive into mine with me.

My very first Substack piece ever was a day in the life for me with LC. What I want people to understand and what I think is hard for most people to understand (even for those of us already with LC) is that Long Covid is a dynamic disability. It can change day to day, month to month, year to year. Sometimes it can get better, sometimes worse. Sometimes one symptom may disappear, only for a new one to crop up later. At one point I was using a cane to walk. Now I am not. At one point I had to take multiple naps a day. Now I don’t. I never had neck issues, but now I have to wear a brace because of cervical spine instability that has given me daily migraines and neck pain for over a month. But that doesn’t mean things couldn’t get even worse tomorrow. There is so much we still don’t know about Covid or Long Covid.

I’ve spoken to friends who have decided they are okay with taking the risk of reinfection and will not mask universally like I do, but I wholeheartedly believe they are making that risk assessment without the full picture and all the data. The CDC notoriously shared incorrect information since the beginning of Covid (e.g., not admitting that Covid was airborne until far too late, and then backtracking when it did finally admit it was airborne), did not correct misinformation or disinformation that spread almost as quickly as the virus itself, and has since lost most if not all of its credibility as the primary public health institution guiding our Covid response in the United States. So it’s no wonder to me that people are making risk assessments not based on the full picture.

I also think that people genuinely don’t know what it’s like to become disabled until they do. I certainly had NO idea (that I could and would become disabled, or what it would be like). People say that they accept the risk of becoming disabled (or worse), maybe because it’s too annoying or restrictive to wear a mask, but until you live with disability (whether physical, neurological, mental, or other), it’s hard to really know what that means (not to mention knowing the kind of financial, care-giving, psychological, and emotional resources that are required to survive as a disabled person).

With all that in mind, I wanted to list out every single symptom I’ve experienced for three months or more or am still experiencing with my LC. I think it’s hard to describe what each single one feels like and how it affects my life, but I hope that even the sheer number of symptoms demonstrates that LC is serious and life-altering. Altogether, these symptoms have destroyed my quality of life, and I don’t even have close to the most severe case of Long Covid that I’m aware of.

These symptoms have forced me to take months off work unpaid. They’ve caused lasting brain damage. They’ve caused me to cut out so much pleasure and enjoyment from my life. They’ve drastically reduced my ability to socialize (masked) or get things done. They’ve seemingly turned my life upside down.

In an incredibly useful paper led by the Patient-Led Research Collaborative, they’ve put together a list of 203 possible symptoms of Long Covid (though there of course could be more). These symptoms span ten organ systems. The full list of symptoms can be found here (and can be useful when speaking to your doctor if you’re having trouble identifying or keeping track of what you’ve been experiencing).

Here’s everything I have had or have (that I’m aware of):

Cardiovascular:

• Heart palpitations

• Pain in chest

• Tachychardia

Dermatologic:

• Hair loss

Gastrointestinal:

• Hyperactive bowel sensations

• Decreased motility

• Constipation and diarrhea

• Loss of appetite

• Nausea

Head/Ear/Eyes/Nose/Throat:

• Blurred vision

• Temporary total losses in vision

• Xanthopsia (your vision turns yellow; for me it was temporary)

• Changes in the voice

• (Perceived) hearing loss

• Sensitivity to light

Immunological:

• Changes in sensitivity to medication

Musculoskeletal:

• Muscle aches

• Muscle spasms

• Stiff neck

• Cervical spinal instability

• Tightness of chest/costochondritis

Pulmonary:

• Breathing difficulty (even while not moving)

• Shortness of breath

Reproductive:

• Abnormally irregular periods

• Pelvic floor dysfunction (including incontinence)

Systemic:

• Chills/flushing/sweats

• Coldness

• Fatigue (sometime extreme)

• Heat intolerance

• Night sweats

• Other temperature problems (including inability to regulate body temperature)

• Post-exertional malaise

• Skin sensations

• Weakness

Mood and emotion:

• Anxiety

• Apathy

• Depression

• Derealizaton/depersonalization

• Irritability

Cognitive dysfunction:

• Acute confusion/disorientation

• Brain fog

• Difficulty problem-solving

• Difficulty thinking

• Difficulty with executive functioning

• Other cognitive symptoms

• Poor attention

• Slowed thoughts

Headaches:

• Headaches (at the base of the skull, behind the eyes, diffuse, in temples, etc.)

• Headaches after mental exertion and physical exertion

• Migraines

Memory issues:

• Forgetting how to do routine tasks

• Long-term memory loss

• Short-term memory loss

Sensorimotor:

• Neuralgia

• Sensation of brain pressure

• Sensitivity to noise

• Dyspraxia

Sleep:

• Difficulty falling asleep

• Insomnia

• Wake up too early

• Waking up during the night

Language and speech:

• Changes to primary language

• Changes to non-primary language

• Difficulty communicating in writing

• Difficulty communicating verbally

• Difficulty comprehending others

• Difficulty finding the right words

• Difficulty with syntax

• Difficulty reading (including dyslexia and dyscalculia-like symptoms)

• Difficulty speaking

• Other speech / language symptoms (e.g., including but not limited to aphasia and phonemic paraphasia)

• Slurring words / speech

• Speaking unrecognizable words

That is over 70 symptoms. Far more than the 20+ I actually thought I had until I finally read through the PLCR’s appendix of symptoms. While this is all I can identify off their exhaustive list, I’m sure there’s more and that there will be more. It seems like there is almost no organ system Covid hasn’t affected in my body (a fact backed up by numerous studies and experts). We are also learning every day about how Covid affects the body, and will continue to learn more about its long-term effects over time.

Now, take a second (if you don’t already have Long Covid) to try and imagine what daily life would be like with all these symptoms that I’ve listed above. I know it’s nearly impossible, but I’m sure you can understand that not a single dimension of your life wouldn’t be affected if you had even just ten of these symptoms. Obviously your health would be affected, but also your relationships, your family, your finances, your job, your mobility, your endurance, your diet, your self-expression, your thoughts…everything. Long Covid leaves no stone unturned.

I desperately hope that these symptoms aren’t permanent and that someday soon they’ll find a cure for Long Covid. But until then, I will continue to wear a high-quality respirator (no surgical or cloth masks) when sharing the air with others to prevent my situation from getting worse, and to prevent others from befalling the same fate as I did.

Note: All my essays are stream of consciousness, mostly because I’m too tired and brainfogged with my LC and ME/CFS, but also because it’s a nice experiment to be (mostly) unfiltered. Thanks in advance for excusing any typos, spelling mistakes, etc.