When Getting Well Isn’t Happening Soon: My Experience with Long COVID

I’ve been wanting to publish this article for weeks now. I knew I wanted to share my Long COVID experience on a broader scale, especially since the condition isn’t widely spoken about. The title of my article is inspired my someone’s response to a social media post I made regarding my experience with Long COVID. They had commented ‘Get well soon’. While I know they had positive intentions behind their response, many do not know about the true experience of Long COVID and how it can last up to many years. I personally have been dealing with Long COVID symptoms for over a year now. I decided today would be a great day to put my final touches on the article and hit publish as today is Long COVID awareness day.

Since the start of the COVID-19 pandemic, I have been knowingly infected with SARS-Cov-2, the virus that causes COVID-19 three times. After my first infection, I didn’t notice any long-term effects. However, after my second infection, I have symptoms lingering for nearly a year now. The most disruptive of the symptoms is a consistent headache. The severity and location of the headache vary day by day. The headache affects me at work as well as my studies and sleep. Some days when I wake up, I feel as though there’s an additional weight within my head and I struggle with positioning myself upright and getting out of bed. Other long-term symptoms I deal with include hair loss, fatigue, as well as occasional chest pain and cough.

COVID has led to long-term impacts for many individuals. Long COVID is impacting more than 1 million children in the US according to CDC as reported by ABC news. About 25% of adults infected with COVID experience Long COVID symptoms. Additionally, the prevalence of Long COVID varies across different groups. Prioritizing COVID infection is necessary to protect the health of all. The greater the number of COVID infections one has, the greater their chance of contracting Long COVID.

After the COVID vaccines were released and before I had learned that COVID could transmit asyptomatically and was airborne, I had relaxed my precautions. I only masked up in public places where I was around complete strangers. After all, I had trusted that anyone I knew wouldn’t meet up with me while they were sick. I continued to mask up at the grocery store, library, on public transit, on planes, and other public spaces. I knew that vaccination alone wasn’t enough as I had seen people in my life getting infected with COVID despite having the latest COVID-19 booster vaccine. I did make an exception for eating at restaurants as that is a common activity to do with friends and I’d opt for outdoor seating if it was available.

Of course later on, I did learn that SARS-Cov-2 is airborne and can transmit asymptomatically. Additionally, I learned that while vaccination reduces the likelihood of hospitalization from a COVID infection, the vaccine does not protect against transmission. Upon learning this new information, I had increased the number of COVID precautions I take. Before, when meeting with friends and family, I trusted that they would not be sick. Now, knowing that asymptomatic transmission can take place, I assume everyone is carrying the virus. I wear a high-quality N95 respirator when I’m around others. If COVID tests were free or more reasonably priced, I could ask others to test before meeting up. Unfortunately in most cases, tests are very pricey. Now, I no longer dine-in at restaurants. I opt to get takeout and if the restaurant is fast-casual, meaning no server is interacting with me multiple times as I’m eating, I eat in the patio area of the restaurant assuming it’s not crowded. I read about restaurant staff online who have contracted COVID at their jobs and I make a point not to interact with restaurant staff unless I’m masked up for the sake of their health as well as mine. When I contracted Long COVID, I rarely made time to see friends in-person. I wanted to recover and protect myself. Upon realizing my symptoms weren’t going away. I made sure to get an air purifier to use when eating a friends’ homes and eat outdoors when possible. Otherwise, I remained masked up.

I thought the research I shared, showing that Long COVID affects people of all ages including children as well as athletes and my contraction of Long COVID would make people in my life more willing to mask as I am a warning sign to them of the result of multiple COVID infections. Unfortunately, that hasn’t been the case. Long COVID has strained my relationships to people close to me. Some people no longer reach out to hang out after I’ve made attempts. Others gaslight me as they’ve read about others with Long COVID and that my symptoms aren’t severe enough. When I refuse to eat in a restaurant, they say I’m not living a normal life. I try to make the point that even if my symptoms aren’t Long COVID, I don’t want to exacerbate them by getting another infection. Getting sick with anything be it COVID, flu, norovirus, etc. will not help me.

I visited two different doctors regarding my headache and other symptoms and that I stared experiencing them after my COVID infection. Both of them say that I could have Long COVID but refuse to give me a confirmed diagnosis. This doesn’t help when I try to explain it to those close to me. I tried headache medicines per their recommendations but instead I ended up getting a rebound headache with every medicine I tried. Another person said, well you look fine. It’s frustrating that I don’t have any visible physical effects of Long COVID or people would more easily believe me. One physical symptom I do have is increased hair loss. Whenever I comb or wash my hair, handfuls of hair come out.

From the research I have read, here is what I have observed as well as what I would like to see going forward for everyone’s health and safety:

I continue to see in-person conferences and events held. Considering that many conferences have attendees from all over the world, having enforced masking would help reduce transmission. Especially since this brings multiple variants of COVID from different countries all in one place. Also, having a virtual option allows the conference to be more accessible to all. Knowing what COVID can do to the brain, STEAM conferences should want to protect their attendees and keep their minds sharp. I was happy to see that PyCascades enforced masking as well as encouraged vaccination and testing this year.

Masking up on planes is especially important. Through air travel, the virus continues to bounce between cities and the number of variants continues to increase. According to a Malaysian study reported by Forbes, 96% of flights have COVID-19 on board.

Masking also needs to be required in all healthcare facilities, including hospitals, doctor’s offices and pharmacies. No one should get sick while accessing essential care or picking up medicine. Additionally, medical staff should not get sick on the job and as many precautions as possible need to be put in place. In the UK, nursing staff and doctors have Long COVID as a result of workplace acquired infections. Healthcare needs to be accessible to everyone regardless of their risk.

School and daycare centers should enforce masking and have air purifiers to cleanse the air. Infections from schools make up 70% of household infections in the US. Air purifiers reduced the number of illnesses among children and staff in Finland. Keeping children safe as well as teachers and daycare staff is essential. Long COVID also has diminished the quality of life of school aged children. They deserve to be healthy. Children and those who work with children should not suffer from a preventable virus.

Ideally, everyone would take a COVID test before interacting with others. Unfortunately tests are not available freely in most cases and rapid tests are known to be inaccurate. High quality respirators can also be pricy. Mask Blocs do address this gap by providing free respirators, COVID tests, and air purifiers to borrow to those in need. Mask Blocs are sustained by donations and through volunteers. Outside of COVID, several Mask Blocs were able to provide respirators to those in LA during the wildfires earlier this year. Masking and the presence of air purifiers in public places is essential to keeping everyone safe. There is no reason why we should allow the SARS-Cov-2 virus to continue spreading in our communities. Research shows the virus is airborne and that N95 respirators protect one from the virus and air purifiers reduce the quantity of virus particles in the air. By caring for yourself and others, we can all be healthier and avoid death as well as long term disability.

Those with cancer or preexisting conditions are at higher risk of contracting COVID-19 and developing Long COVID. To keep public spaces accessible and safe for all, masking should be enforced. In addition, a virtual option needs to be made available for events to ensure all can take part in the experience, regardless of whether they are able to attend in-person. COVID-19 also weakens the immune system, hence why many other viruses and illnesses have been spiking since the start of the pandemic.

I hope that more people read and keep up with COVID and Long COVID research findings. Especially during a time where that information is limited on the CDC, NIH, and other government websites due to the current presidential administration. There needs to be acknowledgment that COVID is indeed still disabling and deadly and we should want to protect those around us as well as ourselves.

Cover drawing illustrated by me!