3 Things to Know About Those at High Risk for Severe COVID-19

As I lay in the hospital, I listen to the clicking and beeping of the IV machines and monitors, waiting for my round of medications for the day to begin. I stare at the nurses bustling away. Their voices muffled under their masks as the fluorescent lights from above reflect off their face shields. I am reminded that this month marks one year since COVID-19 pushed its way into our lives.

When I think back to a year ago, I remember my small businesses being forced to close, my children’s schools closing and the grocery store chaos. “Where’s the toilet paper!” I remember the confusing and ever-changing messaging from the government and the fear of what all of this meant for our futures.

It was about a week later that I was sick with the usual sore throat, fever, congestion, and trouble breathing that had become part of my life, off and on for so many years.  Getting sick is a rather common occurrence for me as someone who is immune-suppressed and prone to chronic infections. In fact, wearing masks was something I had been doing during cold and flu season long before COVID-19. However, my infection last March was even more concerning because now I worried that maybe this cold was the newly revealed COVID-19 virus.

I was quite scared thinking about the possibility of what that could mean for me and my family, including my spouse and children. I have been hospitalized before for serious infections and sepsis from simple colds and flu. I know how bad my body is at fighting back against viruses. Getting sick was always a scary ordeal for me, but the fear of COVID-19 left me with far more worry than the usual infection.

I spent weeks trying to get tested in those last days of March 2020 and remember clearly the relentless feeling of being completely marooned. It didn’t matter that I was someone with multiple co-morbidities, that I was someone on immune-suppressing medication, that my doctor wanted me tested or even that I had a history of breathing issues. The criteria for testing in my community at that time was only available to those who had been out of the country or had been in contact with someone with a known COVID-19 diagnosis. After repeated calls and persistent attempts to enlist help, I was finally told that there was going to be some mass mobile testing coming in the next week. It took another week before I could get an appointment.

Even though I felt absolutely awful, I was pretty sure it wasn’t COVID-19 because quite simply, I was still alive. Nonetheless, I was pretty sick and I needed an answer. When I was finally able to get tested, I had to drive over an hour to a testing site. I then waited several more weeks before finding out my test was negative.

My ordeal last March to get COVID tested was the first of many moments throughout this last year where I would be reminded just how insignificant my immune-suppressed/high-risk label was to others. It would be the first of many challenges that would make me feel disregarded during this pandemic.

As the months went on, I, like many others, struggled with the multitude of challenges brought on from COVID-19. This included having my businesses close, having my children’s schooling turned virtual including my youngest who has disabilities, having my spouse suddenly working from our dining room and taking a pay cut, no longer having a social life, trying to access my medical care and medical care for my daughter in the safest ways possible, etc. For me, however, the biggest strain on my brain was the continuous worry of possibly catching COVID-19 and even worse, as someone who doesn’t do well with fighting infections, dying from it.  I thought about what that would do to my family and I caught myself feeling guilty for even being high risk, even though that was clearly not my fault.

Of course, we took every precaution possible. We didn’t leave the house except for medical-related appointments/picking up prescriptions (which for me is often) or my spouse leaving to get groceries. Of course, masks were always on. The disinfectant wipes, spray and hand sanitizer we had been accustomed to utilizing as part of our daily routine to keep me from becoming sick (pre-COVID), could no longer be found. There was no prioritization of these items for those like me who were in the highest risk of death category. Another reminder of how my health conditions and being high-risk really was irrelevant in this pandemic war.

The lives of those like me, who are considered high-risk, was going unseen and this added a undertone of depression to my daily life that played like background music in my head, all the time. I would try to keep myself busy and think positive, but it was and still is very hard. Friends posting photos of themselves mask-less enjoying life as normal, arguments on the news derived from speculation rather than science and even individuals attacking me personally for simply encouraging people to wear masks for the sake of people like myself, all pulled on me like a heavy weight of woe. A person in my own town even went as far as to tell me that if I die, that is God’s plan and I should just accept it. As a 44-year old mother of three, I disagreed.

To realize that some valued their “social lives” more than my “actual life” was beyond hurtful, not only for myself, but for my family as well. My teen daughter shared with me that a boy she knew had commented that he didn’t care if people died from COVID as long as his family didn’t die. He said, “Sick people and old people are going to die. I don’t care as long as it’s not my family.” He didn’t realize he was talking to someone with both a mother and younger sister who were considered high-risk and how much his comments hurt her.

Every eight weeks, I would (and still do) leave on my trip to the hospital for my regular infusions and testing. I tear up each time, including yesterday, as I hug my spouse before leaving. Those tears come from the knowledge that no matter how careful I am, going into a hospital environment during a pandemic, as someone who is immune-suppressed and unvaccinated, is a dangerous risk.

Now as the possibility for better days is here with vaccines, I am yet again feeling that pain of not having my risk factors matter in the efforts to save lives. In the county I live in, I am not currently able to get a vaccine. When I try to make an appointment for a vaccine in my area, I am disqualified from being able to at this time specifically because of two items on their questionnaire.

• Do you have a serious allergy to any medications, food or latex? Yes, I do.
• Do you have a medical condition or take medications that may weaken your immune system? Yes, I do.

If these questions did not exist, I would qualify for a vaccine in my area at this time since one of my professions falls under the category of a teacher. Essentially, the very reasons why I am high risk for severe COVID-19, are the reasons that are being used to prevent me from getting a vaccine. Not only does this not make sense, but it is unethical and discriminatory, especially when high-risk individuals are getting vaccinated in other cities and states right now.

I have family and friends that have been able to get the vaccine, and every time I hear that one of them has, I have an instant feeling of happiness and relief for them. But it is always followed with the sadness of the reminder that I cannot get one and the fear that comes with wondering when I will be able to.

Another part of this struggle for me personally has been the comments from government leaders who spread misinformation about COVID facts including discouraging mask-wearing, as well as the somewhat cryptic information from trusted health organizations. CDC, for example, states on their website, “…individuals who take immune suppressant medication or therapies, might be at an increased risk for severe COVID-19.” However, they also go on to say, “they should be counseled about the unknown vaccine safety profile and effectiveness in immunocompromised populations, and the potential for reduced immune responses and the need to continue to follow all current guidance to protect themselves against COVID-19.” Essentially, what this tells us is they are aware that people like me are at the highest risk for severe complications, including death from COVID-19, but that because testing of the vaccine was not widely done on individuals like me, there’s no clear evidence to suggest how effective vaccines would be.

All of this information leaves me in a deep black hole of fear.  I know there is a light somewhere at the end, but I just can’t see it yet and honestly, I really need to. I feel myself being swallowed by all of the uncertainty. Throughout this entire year, I have done my best to stay positive, take things one day at a time, appreciate the life I still have and remind myself to just hang on a bit longer. I can only imagine there are many others like me who have felt abandoned as a person with a high-risk condition or disability during this pandemic.

Whenever I write anything, whether it be a script or an article like this, I always do so with the goal of writing something that can somehow help others. With that being said, here are my three things to remember about individuals who are high-risk for severe COVID-19 that I hope you take away from my story.

1.  If you are someone who is high-risk, immune suppressed, chronically ill and/or disabled and you have felt undervalued or forgotten about during this pandemic, please know your feelings are valid, you deserve better and you are not alone.

2.  Regardless of how you feel about masks, please wear them while in public.  Please remember that when people who are at high risk see you not wearing a mask, it makes them feel like you don’t value their life. It hurts.

3.  Although most people have some degree of fear regarding catching COVID-19, for those who are in the high risk for severe COVID-19 category, dying is a real concern. Please consider what that must feel like and if you know someone in this category, give them some extra support. Let them know you are aware that this is a hard time for them, you are there for them, and you do value their life.