This story was told to CreakyJoints by Tinu Abayomi-Paul, a writer, motivational speaker, and disability advocate who lives with multiple chronic conditions and cancer. Tinu contracted COVID-19 this year and reflects on her experience as an immunocompromised person navigating a pandemic.
The pandemic has been a complicated time for everyone, but for people who live with chronic illness, it’s particularly terrifying and disheartening. Two years in, it seems as if everyone has already forgotten what it was like in those early days when we were on lockdown, but I’m still very much in that place.
I live with active chronic lymphocytic leukemia and multiple chronic conditions, such as fibromyalgia, arthritis, hypothyroidism, and anemia. I am immunocompromised, which puts me at a much higher risk for getting sick than the general population.
Even before COVID hit, about 70 percent of my life was spent homebound. But since the pandemic began, I have stayed at home all the time, leaving only to see the doctor and a few other rare exceptions, and even then, I double mask.
Chronically Ill and COVID-Positive
The very first day my children’s school lifted their mask mandate, I got sick. It wasn’t COVID-19, but it was the start of a downhill spiral in my health. My kids had to put on a mask any time they came into my room to see me. Having contact with people who are constantly in the outside world — even my own kids — puts me at risk. But there’s only so much you can do to get other people to take protective measures for you. You can’t exactly hold the mask on their face.
I kept tabs on my symptoms while my mother — who’s a nurse — was out of town. When she got back, I told her I was worse. She swabbed my nostrils and I tested positive for COVID. I wasn’t doing well. I was having trouble catching my breath and struggling to walk the 10 steps to my bathroom. Finally I said, “I can’t do this. I have to go to the hospital.”
Before that point, the hospital was the last place I wanted to go — because what if I got COVID? But now I had it. I didn’t have a choice. I needed professional care. I was so upset with myself. Admitting I needed to go was really hard. I was mad I couldn’t take care of things on my own. I was mad at myself for bothering people. When you’re disabled, you’re constantly battling that feeling of being a burden, and this was an amplification of that worry.
My oldest said that she cried herself to sleep the first two nights I was gone because she thought she wasn’t going to see me again. And at the time, that was a possibility. But I considered it a low possibility because I went to the hospital to live, not to die.
The Fight Against Multiple Medical Biases
As a Black woman, I am deeply familiar with racism in medical settings. When I got to the hospital, I was confronted with that reality right away. On top of that, I had trouble getting a doctor to listen to me because of my body mass index (BMI).
Many patients feel that doctors stop paying as much attention when you’re technically obese or technically overweight. And that’s a big portion of the population. Some doctors tend to give you the minimum of care because they think that no matter what, because of your size, you’re going to die. You really have to fight to get the care you need.
And the burden COVID was putting on the health care system was magnifying all of that: issues with racism, issues with women — especially Black or Latina women — not being listened to or thought to be able to withstand more pain; issues with disabled people being infantilized. Biases come out more strongly when the system is stressed.
My COVID turned into COVID pneumonia. It was like having pneumonia, except the fluid in your lungs feels like sand. It was a scary time to be sick in the hospital, too. All you heard was machines and death. There was a woman in the room next to me who wailed for 24 hours.
I’m a frequent hospital goer. My uncle is a doctor. My mom is a nurse. After that much exposure, I know what it means when they call some of the codes and people rush past your room. I realized that when that woman became silent that it was because she had died. They were not able to bring her back. I said a prayer for her.
I recovered enough to be discharged.
Your COVID Response Affects Your Community
One thing I know for sure is that I don’t want to get COVID again. I don’t want to go back to the hospital. But with every new strain, there’s a new risk. And not just for me, for anybody. It’s not over.
Sometimes I think about how people would willingly bike 100 miles to raise money for cancer research but won’t wear a mask to protect the same people that research helps. The thing is, those of us at high risk aren’t abstract people you’ve never met. We’re people you know and love, and we might die because you won’t wear a mask.
I’m first and foremost a writer, but I’m also a community worker. I’ve always been involved in helping people, especially people who don’t already have a network. Most of my issues are chronic illness issues, but I’m also disabled. People look at me and they don’t see a disabled person. So when I start talking about disability, they’re taken off guard. I use that to my advantage. I use that privilege to get people to listen to me.
I once spoke at The King Center in Georgia about how having a support system makes a huge difference in human survival. And it makes me think about my experience with COVID. Even before I asked anybody to help me, I already had people pouring resources and love and money into my care and well-being. I have a vision of redesigning the way that we function in communities so that we’re not just getting people to survive, we’re showing up for them in multiple ways so that they can thrive.
I hope my story humanizes this experience for people. I hope they really think about the people in their life who could get COVID and make changes in their life accordingly. Mask up around those people. When you go to a common area indoors, assume someone around you is immunocompromised. We’re everywhere. It could be somebody at your work. It could be somebody in your school, or somebody your kids depend on. You never know. So err on the side of safety. Err on the side of compassion.
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