Living with ankylosing spondylitis has trained me for paying attention to subtle changes in my symptoms and paying close attention to my body’s clues. Here’s what they told me when I was worried I had coronavirus.
Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.
My name is Charis (pronounced like Ka-Reese). I live with ankylosing spondylitis (AS), an inflammatory disease that primarily affects my spine, but also other joints in different ways. AS can also damage organs like my eyes, heart, skin, and lungs. The medications I take for AS suppress my immune system, which makes me more susceptible to infection and less able to fight even minor illnesses. A common cold could rapidly turn into pneumonia. Throughout the year I often wear a face mask in enclosed spaces to protect myself from airborne germs.
As a child — before I was diagnosed with AS — I dealt with chronic strep throat, pink eye, and I nearly died in fifth grade after falling ill from three different forms of pneumonia.
All these factors make me #HighRiskCovid19.
I’m more likely to experience severe complications from the disease. From the earliest reports of COVID-19 spreading internationally, I have not been afraid of being mildly inconvenienced for a couple weeks if I get sick. But I have been afraid that I will die in the worst way I can imagine: suffocating to death with hardened mucus filling up my lungs, my organs exploding in a last hurrah as I lie alone in a hospital bed without loved ones by my side.
I already know what it feels like to not be able to breathe. My disease often causes inflammation in my torso, causing pain in my ribs that feels as though I’ve just finished running back-to-back wind sprints. Even years before I was officially diagnosed with AS, my body permanently developed its own survival mechanism in response to this inflammation:
Well, don’t breathe a lot.
My body taught me to breathe shallow breaths, even though technically I could still fill my lungs with my oxygen saturation perpetually hovering around 98 percent. My body had enough oxygen, but I didn’t know how to use it. I haven’t known the feeling of being able to breathe deeply since middle school, perhaps since those 5th grade bouts of pneumonia. My body trained itself to not breathe in excess, even though it could breathe, because it hurt too much.
On the charts I seemed storybook healthy. How I felt was a different matter altogether.
Even as an athlete, a saxophone player, and a thespian (all activities that require a lot of breathing); I subconsciously learned to survive by not breathing deeply.
I got accustomed to being asked why I was upset because I sighed a lot, which was my body’s way of breathing. It was only after I was diagnosed with AS at age 26 that I realized my sighs were how I subconsciously adapted to painful inflammation.
Now, when new friends ask if I’m OK after I sigh, I say, “Oh, that’s normal. It’s just how I breathe.”
After being diagnosed with AS, my body began mimicking other diseases and conditions. AS is a full-body disease and I’m the kind of person who jumps in the deep end when I start something. I got AS, then I jumped in the deep end with it.
In the past few years, I have had my heart, lungs, intestines, arterial oxygen blood flow, and more things tested because of all the ways inflammation from AS impacts me physiologically. All those tests have shown a perfectly operational heart, lungs, intestines, oxygen flow, and more. But I still feel the rampant inflammation. It’s very real.
I haven’t known what it’s like to be without pain or fatigue since I was at least 13 years old. I live a life of pain and fatigue. The pain I tolerate each day would send almost any healthy person to the ER, begging for relief. The fatigue I actively push through daily feels like how I felt after running my first — and only — marathon years ago.
Even though my organs seem perfectly fine, I’m highly sensitive to the systemic inflammation AS causes. I feel everything. In a sense, I feel I am perpetually just outside detectable ranges for massive problems. I am perpetually “just healthy enough” — living within the confines of a very sick body, ravaged by a disease that has no cure.
I share all of this so you understand what it is like for me to live in fear of getting sick from the coronavirus. So many of my usual daily symptoms mimic those of COVID-19.
- I always struggle to breathe.
- I have a chronic, dry cough.
- I am never without muscle and joint pain.
- My gastrointestinal system is unreliable, varying between food poisoning-esque symptoms, diarrhea, lack of appetite, and more.
- The as-needed steroids I take can cause flushing and temperature spikes, and I occasionally have “sweat-naps” where I sweat through layers of clothing and sheets.
Sound familiar? These are all possible COVID-19 symptoms.
In early March — across a span of about 10 days as I experienced new, worsening symptoms all at once (not one at a time, like usual) — my anxiety grew. It was as if all my occasional, non-pandemic-time symptoms were happening all at once and increasing in intensity to almost exactly match the new pandemic disease. I actively fought off fear, not wanting to go inside any medical environment even to be tested for the flu.
I didn’t want to be exposed.
I also didn’t want to somehow already have COVID-19 despite all the precautions I began taking a week before public officials began telling people to shelter at home in my state of California. Even while many people in my life were still claiming the flu is worse than coronavirus, I knew deep down that what we were dealing with was much, much different than the flu.
After I began sheltering at home, the only person I had physical contact with was my partner, whom I had not seen for over a month because of their job.
Despite all my precautions, I still developed the scary symptoms. And they got bad enough that I could no longer deny my rapidly deteriorating health.
Here’s how I almost died waiting for the coronavirus results.
For weeks I had been on the front lines writing essays for CreakyJoints about being disabled and immunosuppressed and feeling disposable. I helped co-found a hashtag (#HighRiskCovid19) that quickly went viral on Twitter and spent hours talking with fellow chronically ill colleagues about how best to advocate on a large scale for our community to be seen as valid. As I was being interviewed by multiple media outlets, I shared that I was planning for my own death, were I to somehow catch COVID-19.
On March 19th, I sent the following message to several colleagues and friends:
All, I want to update you on me. I woke up yesterday feeling a bit congested. For several days now I’ve felt a faster heartbeat, more fatigue, and even two barely noticeable second-long waves of nausea, some feverish feelings but I haven’t had a temperature. And then there’s my normal chronic dry cough and usual trouble breathing (center of chest, ribs are sore) and dizziness/lightheaded. All those can be easily attributed to normal life or medication. But this morning I woke up with more congestion and immediately began coughing when I got up. No temperature. What I’m blowing out of my nose is even a little bloody (sorry, TMI. Also, could be dehydration).
After multiple phone calls to various doctors and a conversation with a triage nurse who didn’t seem too concerned about me because I didn’t have a fever, I made the decision to go to my usual urgent care walk-in clinic to (hopefully) be tested for COVID-19. I usually don’t run a temperature because of the medications I take that suppress my immune system. For me, running a “real” temperature would be extremely dangerous.
The clinic was a ghost town. Every other chair was taped with a big “X” over the arms to enforce some measure of social distancing. But no one was there except me, standing shakily, afraid to sit. It would be over 90 minutes before I left again, exhausted and sad that in my extreme fatigue I had let myself lie down on the exam table, exposing myself to the likelihood of even more germs. I was more afraid of the medical environment than the possibility I might have COVID-19.
I tested negative for Flu A, B, and AB before the doctor suggested a chest X-ray and a coronavirus test. Thirty minutes later a swab was stuck down my nose to the farthest reaches of my throat, in both nostrils. It burned like a needle gliding across bone. The doctor said, “Your symptoms are hallmark for COVID,” then, “We’re lucky we have tests in this facility.”
I nodded grimly, aware of my privilege to get tested when so many can’t be.
“Three days?” I asked, repeating what the phone triage nurse had said hours before about test results.
“Actually, more like five,” he said. I was horrified.
The whole office was worried about me. It felt nice, in a way, to be taken seriously for once.
By the next day, I believed I was in the beginning stages of dying. A group of my closest friends joined a video call to plan how to get my will and advanced directive signed. My breathing was so shallow I couldn’t say more than a few words at a time without needing a break. The conversation largely revolved around deciding when — not if — I should go to the emergency room.
My friends wanted me to go that same day, but I knew I wouldn’t be admitted I wasn’t in true acute respiratory distress (ARDS) yet. I didn’t want to unnecessarily expose myself to COVID-19 if I didn’t have it and I didn’t want to waste an exhausting trip to the ER when there was a possibility I would be turned away. I wanted others who were in worse shape than me to have a bed.
These are, unfortunately, the same decisions I make in non-pandemic situations many times a year. Having lived with a severe chronic disease for seven years means I have studied my disease, researched it (yes, led research), led support groups, attended medical conferences, spoken with media, lobbied Congress, educated my own doctors, and advocated for my own care constantly. I consider myself a medical expert because of my seven years of lived-experience education.
I’ve had plenty of bad experiences in the ER because I always have telltale physiological symptoms, but testing never shows anything wrong. The last time I went to the ER with breathing trouble — pre-coronavirus pandemic — I was met with the harshness of tired doctors who said nothing was wrong with me after testing, even though there I was in front of them barely breathing.
The lingering trauma over these unproductive ER trips makes the ER the last place I want to go, ever.
Medical trauma doesn’t fade when you live the reality daily. We with chronic diseases know we have to be in the worst shape of our lives to consider venturing into an environment where so many of us are met with stern denials of care and compassion as we calmly share our medical history. We don’t scream or moan because we’ve had years of practice shielding our pain from public exposure. ER doctors never know what to do with us because we never look like we’re dying, and even in level 8 and 9 pain we don’t cry and scream.
I am perpetually lurching forward in unknown territory. All the decisions I make about my life are complicated by the fact that my disease is unreliable, and because there is so little known about it by science or standard medical practitioners.
Later that afternoon my partner and their friend signed my will and my advanced directive in my driveway. I could barely breathe. I was barely aware of my surroundings. Everything was a blur. I had begun to feel scared, feeling the full reality of the last two days and the next couple weeks.
I didn’t want to suffocate to death by COVID-19. That wasn’t how I wanted to die.
At the same time, I told my friends I was ready to be a martyr. It fit my work on earth, my desire to be a voice for the silenced and change the world by telling my story.
My partner cleaned my gross kitchen sink and organized the counters. A sibling came to stay with me and take care of me because others didn’t want me to be alone. One friend voiced his fear that I would stop breathing overnight.
We were all expecting me to get worse. To die.
I was breathing a little better the next day. I “partied” that night with my sibling and partner, who both set up a bed for me to lie on while they built and nursed a fire in my back yard. I drank a small amount of whiskey. I knew I was pushing it, but I wanted this time with loved ones.
I was worse again the next day, the same day the urgent care doctor called with my results. It took four days, not five. I was still so sick.
I was negative for COVID-19.
Negative. I did not have coronavirus.
But I still couldn’t breathe. What was wrong with me?
I wound up going to the ER because urgent care wouldn’t let me come back. I knew I was risking my life to go to the hospital and be exposed to a disease I was surprised to learn I didn’t have. I knew I was risking the life of my partner and my friend who took me.
I hoped to get a chest X-ray. If the negative COVID-19 test didn’t quell my growing anxiety, then at least knowing I didn’t have pneumonia would help, I thought. I was hoping that reduced anxiety would help my breathing. I didn’t have pneumonia either, the imaging showed.
After returning from the ER, I joked with my sibling, Laura, who was staying with me, that I got “placebo-COVID” for practice. Now, my will is in place. My advanced directive is filed. My friends know the drill if I have to ring the alarm bell again.
When my friends text me to ask how I’m doing, I say, “Well, I’m not dying like I was three days ago.”
I still get dizzy when I stand. I still have diarrhea. I still feel temperature fluctuations. I still can’t breathe, and my heart rate still increases randomly.
I still can’t breathe.
I am left with knowing that, yet again, my body has developed a full-fledged attack against itself and I have no answers for it.
I think about how my body reacted to what I’m now thinking was a sudden flare in symptoms — albeit one like I’ve never experienced before — and it terrifies me to consider how my body would react if I were to actually get COVID-19.
I spent two days thinking I was in the process of dying. Friends and family were worried. We were planning my death. It felt real. It was real.
What would COVID-19 feel like for me? If I multiplied my “flare” symptoms by two? By five? By ten?
I am still terrified. But at least my loved ones and I know I am ready when — not if — the time comes.
Get Free Coronavirus Support for Chronic Illness Patients
Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.