When You’re Still Sick: Living with Long-COVID and HIV

By: Marcus J. Hopkins, ADAP Blog Guest Contributor, and Founder & Executive Director of the Appalachian Learning Initiative (APPLI)

Recently release research in The Lancet has found that, in addition to Long COVID, other respiratory ailments (Acute Respiratory Infections, or ARIs), such as colds, flus, and pneumonias, are associated with a wide range of long-term symptoms more than four weeks after the acute infection (Vivaldi, Pfeffer, Talaei, Basera, Shaheen, & Martineau, 2023).

This article was sent to me by Brandon M. Macsata, CEO of ADAP Advocacy, after graciously allowing me to cancel my attendance at the most recent Health Fireside Chat in Philadelphia due to a respiratory ailment.

“I read this article and said, ‘Hmmm…sounds like Marcus.’”

And it did.

On July 14th, 2023, I attended an outdoor ABBA tribute band concert with my mother and stepfather, but left early because I was feeling sick. I got home, and within twelve hours, I could barely breathe and moving was a chore. The following Monday, I tested myself for COVID, and got a negative result, so I thought, “Okay…must just be a summer cold.”

And then, it lingered.

By August, I’d spent most of July sleeping ~12 hours a day, between sleeping at night and intermittent naps throughout the day. My waking hours were spent coughing for so long I would literally lose consciousness from the lack of oxygen and come to a few moments later to find myself slumped over in bed and disoriented.

I had to push back several deadlines with clients, and when I reached out to my Primary Care Physician (PCP, who is also my Infectious Disease, ID, doctor), they recommended I go to Urgent Care for testing, where I was given a breathing treatment while they tested me for fourteen different respiratory ailments, from multiple strains of COVID to flu to tuberculosis, took X-Rays of my lungs, and sent me home with an inhaler, a strong antibiotic, and instructions to rest.

Another week went by, and there were no changes. Finally, my ID doc agreed to see me, where I was put through another battery of tests to see if non-ARI issues were to blame for my symptoms, including thyroid function, testosterone levels, prostate-specific antigen (PSA) levels, lung function, toxoplasmosis (from my eight cats), and virtually every other disorder or disease that are common for People Living with HIV/AIDS (PLWHA). After several hours, I left with a steroidal inhaler, a new statin drug, and additional orders to rest.

Another month went by, and my symptoms continued. 

It’s been three months since my initial illness, and still, I find myself regularly out of breath, physically exhausted from simple tasks such as walking down the stairs or into the kitchen, and suffering from neverending bouts of intestinal issues. Ultimately, they determined I must have initially had a negative reaction to receiving a second Shingrix vaccine on July 12th—a claim that seemed plausible, but still unlikely.

And then, Brandon sent me The Lancet article.

These symptoms I am still experiencing align perfectly with those described in The Lancet. Patients who had Non-COVID ARIs were more likely than COVID patients to report certain symptoms, including diarrhea, sleep problems, and coughing. They were also likely to report muscle or joint pain, difficulty concentrating, and lightheadedness or dizziness (Figure 1):

Figure 1.

Regularly Reported Symptoms by Patients Dependent Upon Infection Status

Photo Source: The Lancet

While this research does not definitively answer the underlying question, “What the Hell is Wrong with Typhoid Marcus,” it does provide me with another piece of information to send to my ID specialist for consideration.

One of the most humiliating parts of living with a chronic condition, like HIV/AIDS, is having to navigate the various conversations we must have with any number of parties to explain our health issues without opening ourselves up to unwanted or undue levels of scrutiny. Some of the conversational barriers we must overcome include:

1. How do we communicate our symptoms to our healthcare providers without coming across as a hypochondriac?
• Will our providers believe us? (This concern is particularly felt by persons of color or of trans experience)
• Will additional tests or examinations provide us with definitive answers?
2. How do we communicate our health issues with our employers or clients without risking our employment or incomes?
• Will our employers or clients be understanding of our health challenges and willing to extend deadlines so that we are able to meet them?
• Will our employers or clients consider these delays unacceptable and terminate our employment or contracts? If so, is there any recourse?
3. How do we communicate our health issues to friends and loved ones?
• Will our friends understand that we may not have the capacity or ability to respond to their inquiries about our health?
• Will our family members understand that we may not have the energy or ability to live up to familial obligations?
• Will anyone be able or willing to help us pick up the slack, in terms of chores, daily tasks, or caring for dependents?

When it comes to our incomes, how will we navigate the very real possibility that our incomes will suffer if we’re physically unable to work? Will we be able to make rent? For PLWHA, is there an immediate support system in place that can quickly respond to our needs as they relate to utility and housing costs, given the dysfunction that typifies the Housing Opportunities for Persons with HIV/AIDS (HOPWA) program?

Luckily, my clients have been largely understanding and accommodating, in no small part because I, personally, am an open book when it comes to my health. Other PLWHA may have neither the luxury of being open about their health issues nor the interest in telling others about their health. This is another area where PLWHA must navigate what level of disclosure is right for them, if any at all.

So, here we are.

I am slated to fly to Washington, DC, next week to attend an in-person meeting, and…if I’m being honest, I’m not certain whether or not I will have the energy to do so.

This places me in the very frustrating position of having to explain to the organizer that I will have to attend virtually, even though I confirmed my in-person attendance in July…before all of this started.

Hopefully, I’ll be able to return to some semblance of normal health sooner, rather than later. In the meantime, I’ll keep using my inhaler and resting.

References:

Vivaldi, G., Pfeffer, P.E., Talaei, M., Basera, T.J., Shaheen, S.O., & Martineau, A.R. (2023, October 06). Long-term symptom profiles after COVID-19 vs other acute respiratory infections: an analysis of data from the COVIDENCE UK study. The Lancet. https://doi.org/10.1016/j.eclinm.2023.102251.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.