Today is International Long Covid Awareness Day, which is why I wrote the article “Long Covid is a disabling disease, and it’s not rare” for Psychology Today. There are millions of people like me, living with the shattering symptoms of Long Covid. Many have been sick and disabled for almost four years now. For me, it’s been over two years since Long Covid stole my career as a pediatric doctor from me.
You can’t see Long Covid just by looking
What you see when someone has Long Covid: their better hours. Who wants to post unflattering pics of themselves on social media? People with Long Covid usually don’t post pictures and videos of their miserable times. They also stay home during those times, often in bed. So if you see a friend with Long Covid and exclaim, “But you look good!” or “You don’t look sick.” make sure you clarify that you mean to be encouraging, not to deny their struggle.
What you don’t see in Long Covid: the bad hours and days. My own symptoms are constant; they start at bad and go to very bad or totally debilitating. But when they are simply bad, you can’t tell from a quick photo.
What you don’t see in Long Covid: the impact on families. I went from Pediatrician, speaker, writer, mom and caregiver of my family to disabled, sick and being cared for by my kids and husband. The stress on my family cannot be understated.
International Long Covid Awareness Day
That’s why I’m grateful for International Long COVID Awareness Day as an opportunity to recognize the ongoing need for support, medical treatment and research.
Today I posted an article in Psychology Today that took me over two years to write, because it’s painful to publicly share that much detail about what Long Covid has done to me.
If you know someone with Long Covid, reach out to them today and let them know you recognize that they are living with grit as they endure the symptoms of Long Covid. Maybe they are still able to work and are barely hanging on as they do so, like so many I know. Maybe they are like me, home and disabled.
If you know someone who seems to have disappeared, they just might be someone with severe and disabling long Covid like I have, that makes it hard to leave the house or socialize. Please text them and let them know you care.
Or consider posting on your own social media feed in support, using these hashtags: #confrontlongcovid & #longcovidawarenessday. Or download a social media graphic like the one I used in my post.
Long Covid stole my pediatric career
It has been over two years since the day that I left my pediatric clinic not knowing I wouldn’t be able to go back, and I am still grappling with the symptoms of Long COVID. As both a physician and a patient, the frustration of not being able to work is overwhelming. I intimately understand the needs of Long COVID patients and the variability of treatments available, yet I find myself facing disbelief from doctors who are unfamiliar with the condition. To be unable to get out there and help other patients who need a doctor that understands Long COVID is infuriating.
The desire to contribute to the well-being of my patients and community remains strong within me. However, my physical limitations prevent me from fulfilling this calling. As a physician, witnessing the pressing needs of those with symptoms of Long COVID and being unable to use my skills to help is deeply disheartening.
The symptoms of Long Covid
Long Covid Fatigue
As I wake up each morning with Long Covid, I am greeted not by the refreshed feeling of a good night’s sleep, but by an overwhelming sense of fatigue that envelops me like a heavy blanket. It’s a fatigue that penetrates deep into my bones, weighing me down before I even have a chance to begin my day. Simple tasks that used to be effortless now feel like insurmountable obstacles, and the thought of getting through the day ahead seems daunting.
Shortness of breath
As I try to get moving, I notice the familiar tightness in my chest, accompanied by a feeling of breathlessness that makes every breath a struggle. Even the slightest exertion leaves me gasping for air, as if my lungs are unable to fully expand. It’s a constant reminder of the virus that once invaded my body, leaving behind lingering effects that continue to disrupt my life. Shortness of breath simply with talking is now normal for me.
Long Covid brain fog
Throughout the day, I find myself grappling with cognitive difficulties that cloud my thoughts like a dense fog. Simple tasks require an extraordinary amount of effort as I struggle to maintain focus and clarity. My memory fails me at the most inconvenient times, leaving me feeling frustrated and helpless. This Long Covid brain fog is like nothing I’ve ever faced before.
Muscle pain
Many people with Long Covid have persistent pain in their muscles and joints. I am fortunate in this area: I only have pain like this during my flare-ups or crashes. When I do, everything hurts rest and simple movements send waves of discomfort radiating through my body.
Headaches
Headaches come and go like unwelcome guests, varying in intensity but never truly leaving me in peace. They linger in the background, a constant presence that adds to the overall burden of my symptoms. I’ve experienced at least four of five new kinds of headaches that I never had before Long Covid.
Heart symptoms
At times, my heart seems to betray me, its rhythm irregular and unpredictable. My doctors have tried different medications to help with this, and with their help my heart went from racing all the time to only sometimes. Every afternoon, my heart pounds hard in my chest as I attempt to sleep, since sleep seems to help my heart recover.
In August I was hospitalized for crushing and unrelenting chest pain which labwork localized to my heart. In November, I was seen at the Mayo Clinic where a specialized cardiologist confirmed that I had had myocarditis. While he could not prove a cause, myocarditis has been widely found to be associated with Long Covid. It’s a dangerous and life-threatening inflammation of the heart muscle. Fortunately, I recovered well and all my tests looked good. Unfortunately, there is no treatment. All I can do is hope it doesn’t come back.
Sleep trouble in Long Covid
Most people with symptoms of Long Covid struggle with insomnia. I have certainly had my share of nights with little respite from the relentless onslaught of symptoms, as I toss and turn in a futile attempt to find a comfortable position. But most of the time I am hypersomnic: requiring 10-12 hours of sleep at night and 2-4 hours in the afternoon just to wake up exhausted.
Gastrointestinal symptoms of Long Covid
Gastrointestinal symptoms of Long Covid add to the list of discomforts that have become a routine part of my daily life. I developed gastroparesis due to Long Covid, a condition where the stomach does not empty properly. The food and water just sits in my stomach, causing pain, nausea and sometimes vomiting. Nausea, diarrhea, and abdominal pain are common for me now.
Lightheadedness and Vertigo
And then there are the moments of dizziness and lightheadedness, which are often provoked simply by sitting up straight, and almost always when standing. Dizziness with rapid heart rate are some of the most common symptoms of Long Covid, and are part of postural orthostatic tachycardia syndrome or POTS.
As a pediatrician, when a patient would come to see me with dizziness, I would always carefully clarify which or two kinds they had. Was it lightheadedness or vertigo? Lightheadedness is typically associated with a feeling like you might pass out, while vertigo means the world seems to be shifting or spinning. I have never had a patient that had both kinds of dizziness at the same time.
However, my symptoms of Long Covid include both vertigo and lightheadness, often at the same time, even when lying down. When the world seems to spin out of control and I struggle to find my footing. It’s a disorienting sensation that leaves me feeling unsteady and vulnerable, as if the ground beneath me is constantly shifting.
Tinnitus
When I got my first (and only) case of COVID-19 in January 2022, I spent weeks fighting to breath due to a severe asthma response to the infection. After that, the first symptom of Long Covid I noticed was tinnitus. As I began to be able to hear anything over the sound of my own labored breathing, what I heard was loud high-pitched ringing. I have had tinnitus every minute of every day since then, sometimes so loud that I cannot hear my children talking to me.
Living with long Covid
Living with long Covid is like navigating a never-ending maze of symptoms, each one presenting its own unique challenges and frustrations. But amidst the struggle, there is also resilience – a determination to persevere in the face of adversity and a glimmer of hope that brighter days lie ahead.
