Tag Archives: being immunocompromised

Speaking Up for the Immunocompromised

by Jennifer Crystal

I live in a high-rise apartment building with a common laundry room for hundreds of apartments. The long, narrow room is lined with ten washers and dryers, with barely enough space for one person to walk, much less two. My neighbors and I usually do an awkward dance, squeezing behind each other to get to the dryers, or letting someone push their laundry basket past before opening a front-loading washing machine that blocks the way. 

This system worked just fine until the COVID-19 pandemic. In such a tight space, it’s impossible to practice social distancing, so I’ve learned to do my laundry at low-traffic times. If someone else is in the room when I arrive, I wait in the hallway for them to finish before entering. Then, wearing a mask and gloves, I disinfect the machines and hope that no one else will show up before I finish. Sometimes, if another person arrives, they do what I do: give a little understanding wave, and wait at the entrance of the room until I can load my machines and leave. 

Yesterday, I was not so lucky. I was taking my clothing out of the dryer when two neighbors walked in: one masked, one unmasked. Though our building has a rule that residents must wear masks in common areas such as the lobby, the elevator, and the laundry room, many of my neighbors do not follow it. As an immunocompromised person, this makes me terribly nervous. 

I’ve already had COVID-19, but we don’t know enough about individual immunity yet for me to feel confident that I can’t get reinfected. Moreover, despite my overall recovery—I’m still dealing with a lingering cough—I can’t say with absolute certainty that I’m no longer contagious. For my own safety and the safety of others, I wear a mask and assiduously follow social distancing guidelines. 

I hope my neighbors will do the same, but as I learned in the laundry room, I can’t count on that. As the masked and unmasked people neared me with their laundry baskets, I politely asked, Would you mind waiting just one minute while I finish taking my laundry out, so we can stay six feet away from each other?” The masked neighbor looked a little taken aback. She didn’t wait, but she at least decided to load her clothes in a machine that was further away from mine. The unmasked neighbor pushed right past the masked neighbor, close enough to breathe on her, and started loading the dryer next to mine. I stopped what I was doing and backed away, but the only place to do so, without standing right next to the other neighbor, was the corner of the room. Still, I was only a foot or two away from each neighbor. I waited there, cornered until both neighbors finished and left. 

When people don’t wear masks but keep their distance from others, their choice is personal. But when they don’t take this simple gesture and get too close to others, their choice infringes on another’s personal safety. Now that businesses are opening again, immunocompromised people would like to join the outside world, too, but they worry about how they can safely do so. They can take all the proper precautions: wearing a mask, keeping their distance, and washing their hands, but they can’t control what other people do. And if they live in a crowded area, or have to negotiate tight spaces like elevators, the prospect that others aren’t taking the necessary precautions keeps patients locked at home out of fear.

Part of the problem is that the immunocompromised don’t usually have a physical marker that flags them as such. Another high-risk group for COVID-19, the elderly, can usually be easily identified because of their age. People tend to give the elderly a wider berth on the sidewalk. They have designated shopping hours at grocery stores so they don’t need to come in contact with younger, unmasked people. 

For the immunocompromised, especially those who are younger and otherwise don’t seem sick, staying safe isn’t so easy. Others may assume they’re healthy just by looking at them, and not think it’s a big deal when coming close. Even one of the EMTs who took me to the hospital when I first experienced COVID-19 symptoms said, before learning of my underlying conditions, Well, even if you have [COVID-19], you’re young and healthy, so you’ll be fine.” 

Fortunately, I am fine. My recovery from COVID-19 has been slow, but steady, and I was never on a ventilator. Many other people have not been so lucky, and those who haven’t contracted the virus are rightfully scared of what could happen to them if they do. 

When the pandemic first hit the U.S. and shelter-in-place orders went into effect, my plea to healthy citizens was to stay home, not just to protect themselves, but moreover to protect vulnerable citizens. Now, as areas start to reopen, my plea is, by all means, come out and enjoy yourselves—just please do so with the safety of others in mind. Wear a mask, wash your hands, and keep a respectful distance. That person you brush by in the grocery store could be immunocompromised. It could be me.


Additional COVID-19 and Lyme Disease Resources:

Blog: Corona With a Twist of Lyme
Blog: Corona With a Twist of Lyme: Part 2
Blog: Corona With a Twist of Lyme: Part 3
Video: Webinar with Dr. Cameron and Lyme-COVID-19 patient
Letter: GLA CEO Addresses COVID-19 and GLA Community
Letter: GLA Chairman on What We Can Learn from COVID-19 Response
GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

Corona With a Twist of Lyme: Part 3

by Jennifer Crystal

Since writing “Corona With a Twist of Lyme: Part 1” and following up with a sequel a few weeks later, I’ve received many emails from those who wonder how I’m doing. In this post, I will give an update on my health, and also speak to some of the lessons I’ve learned while battling presumed COVID-19. 

My COVID-19 symptoms started with vomiting on March 11. I then developed a low-grade fever, dry hacking cough, and shortness of breath. After two weeks, I started to feel better—though I never quite shook the cough—and then a second wave hit: the low-grade fever returned and the cough worsened. During week four, I completely lost my ability to taste and smell. 

My Part 2 update was during week five. My sense of taste was starting to come back—I could discern if something tasted bitter or salty, though I could not yet determine flavor—and I could not smell a thing. I then developed sinus congestion for over a week. After that went away, my sense of taste came back fully, and my sense of smell started to return. First, I noticed intense scents like cleaning fluid. I couldn’t distinguish the particular scent of a candle, but I could tell it smelled like wax. Slowly, blissfully, my olfactory system returned to full working order. I can smell everything now, from the pungent odors of brown bananas or tuna to gentler and more pleasant smells like muffins and oatmeal. 

Besides a newfound appreciation for the senses of taste and smell, battling COVID-19 has given me increased gratitude for my body’s ability to heal. Like recovery from tick-borne illnesses, the process has not been linear. My fever went away and came back more times than I can count. I met the seventy-two hours fever-free” guideline for ending quarantine over and over again. Sometimes the fever would come back five days later. Sometimes seven. During one stretch, I went two and a half weeks without fever, only for it to return. As of this writing, I have been fever-free for three weeks, and truly feel that I am past that point of infection.

In fact, my doctor thinks I am past active infection entirely, and will soon run an antibody test and other biomarker tests to support that supposition. Clinically, the only symptom that lingers is the cough, which is improving slowly. I still get short of breath after exertion, and unloading the dishwasher or talking for an hour can leave me winded. However, my chest x-ray was clear, so my doctor feels I am dealing with residual lung inflammation, likely worsened by the inflammation already present in my body as a result of Lyme disease. Thanks to supplements that target this inflammation, as well as a continued anti-inflammatory diet, occasional use of an inhaler, and lots of tea with honey, the cough has become less frequent and shallower. In the time it’s taken me to write this post, I haven’t coughed once.

Moreover, no longer do I feel sick. During the weeks when the fever would relapse, I felt overall malaise. It wasn’t the same as the extreme exhaustion of acute Lyme, but my energy was low. Standing made my legs feel heavy, not to the extent that they do during a babesia flare, but still, it was an ache that made my bones hurt and sent me back to the couch (but not to bed). In the last couple weeks, I have started feeling much more like myself. It will take time to rebuild my stamina, but I can now walk a block without getting winded or tired. As with tick-borne illnesses, I have good days and bad days, sometimes feeling like I take two steps forward and then one step back. Still, I am moving in the right direction. I have every intention of being able to kayak and paddleboard by the end of the summer!

You might ask, after 90+ days of convalescence, why I’m feeling grateful for my body’s ability to heal. The answer is that I am not alone in this long-haul recovery from COVID-19. A recent article in The Atlantic entitled “COVID-19 Can Last for Several Months” tells of thousands of patients like me who got sick in March and who are still battling residual symptoms. Some are worse off than I am. Most are relatively young and were previously healthy and fit with no preexisting conditions. And that is precisely why I am so pleasantly surprised by how well my body has fared with COVID-19. Despite underlying conditions of Lyme, babesia, Ehrlichia, and Epstein-Barr virus, my recovery has been similar to if not better than thousands of healthy people with relatively mild cases of COVID-19. 

The other good news I have to report is that my underlying infections do not seem to be flaring as a result of COVID-19. I admit there were a couple of weeks when I thought they were worsening, especially when I couldn’t shake the fever or fatigue. But like Atticus Finch in To Kill a Mockingbird, my doctor said it was not time to worry yet”—and he was right. 

This experience has reminded me to have faith in my body. It has reminded me to listen to it: to rest when I need to rest, not to push myself until I am ready, to care for myself gently. And as with my tick-borne illnesses, this self-care has paid off. As a Lyme patient, I have fought COVID-19 and landed on my own two feet.


Additional COVID-19 and Lyme Disease Resources:

GLA POV: Parallel Pandemics: COVID-19 and Lyme Disease
Blog: Q&A on COVID-19 and Lyme Disease with LLMD
Blog: Personal Patient Experience with COVID-19 and Lyme Disease
Video: Webinar with Dr. Cameron and Lyme-COVID-19 patient
Letter: GLA CEO Addresses COVID-19 and GLA Community
Letter: GLA Chairman on What We Can Learn from COVID-19 Response


jennifer crystal_2

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].