Pandemic Panic Is Real for the Immunocompromised

Lisa Weber avatar

by Lisa Weber |

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As the meeting doors open, I’m met with the coolness of a windowless, air-conditioned room. Normally, I would welcome this gift on a sweltering summer day, but today is different.

I immediately question the purity of the air I’m about to breathe in. I reluctantly enter and scan the room for my seat. My heart races as I realize there are hundreds of people in a closed space. Only a handful of people are wearing masks.

I contemplate running back out to the safety of fresh air, but I don’t have a choice. Despite my fears, I need my job and the health insurance that keeps me alive. COVID-19 scares me, but so does dying from scleroderma.

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I’m a teacher in Florida, where Gov. Ron DeSantis recently signed an executive order making masks optional in public schools. This means I will be teaching in a building with hundreds of unmasked children.

These are young kids that typically have a hard time remembering to cover their mouths when they cough, or to not pick their noses. Don’t get me wrong, I love these cuties and my job. I’m just not comfortable being in public without any protection to slow the spread of the virus.

Social distancing isn’t possible in a classroom. I was optimistically hoping that the majority of students and faculty would still wear their masks, but after walking into that staff meeting where those who wore masks were in the minority, I’m no longer hopeful.

I know masks are inconvenient and uncomfortable, and wearing them has been a heated topic in homes across the world. Some experts cite their effectiveness, while others claim the opposite. I don’t have any credentials to join the debate about the science, but I do know that our local hospitals are once again overflowing with extremely sick patients battling COVID-19, particularly the new delta variant. At the very least, masks are a sign that people are trying!

I’m vaccinated, so why am I afraid?

Despite receiving both shots of the COVID-19 vaccine, I may not have much protection against the virus. My specialists have warned me several times that there are concerns about the vaccine’s effectiveness in people with compromised immune systems.

I can get a blood test to see if I have the antibodies to protect me, but I can’t handle the possibility of learning that I have no armor against this monster. I’m close to a complete breakdown, and I need to hold on to some type of hope.

I just want to live

Every day, I patrol my home armed with sanitizers. I enforce strict rules for everyone who comes in: Shoes off outside, wash hands, change clothes, sanitize phones. It’s exhausting! The frustrated sighs I hear constantly are exhausting, too.

When I’m in public, I try my best to stay safe. Wearing a quality N95 mask is uncomfortable, but it improves my chances of not contracting this dangerous virus. Carefully selecting a seat far from others helps limit the droplets coming directly at me. And I’m constantly drowning my hands in sanitizer and holding my breath every time I hear someone cough. Does that even help?

Sometimes I want to give up

Regarding my husband and kids, I know they’re not as careful as I am. It’s certainly not because they don’t care. I’m forever grateful for their efforts, but they’re not psychotic like me! You have to be all-consumed and obsessed to reach the level of awareness I have about COVID-19.

Jokes aside, I’m not handling this pandemic very well. Sometimes I think it would be better for everyone if I got it over with and got the virus. I try to convince myself to let go. If I survive, great! If I don’t, it is what it is.

Of course I don’t wan to die, I simply crave a life I can fully enjoy.

Despite these thoughts, my love for my husband and the girls always slaps me back to reality. What if I do get sick and my lung function worsens, or God forbid I die? I don’t want my family to question whether they had done all they could to protect me.

And my children are teenagers. I refuse not to be here to help them navigate these tough years while they find themselves.

We spent months completely locked in at the start of the pandemic. Then my children watched the world move on as their friends returned to school without them. My husband lost his rankings at work by taking a leave. Letting go is not an option, because they’ve already given up too much for me.

I’m not ready for the world to return to “normal.” It’s too soon, and it feels like the lives of those of us in the high-risk community are being put at even greater risk.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Carolyn Sherman avatar

Carolyn Sherman

Lisa Weber conveyed perfectly how I feel about having Scleroderma, Sjogrens and Raynauds during all these stressful months of Covid. I share her feelings of worry and fear while doing everything possible to stay healthy and well. I so appreciate her sharing! Do hope you stay well, Lisa!

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Lynn Lueken avatar

Lynn Lueken

Thank you for writing this article. I have scleroderma and our daughter has Down Syndrome. My husband and I are 64, she is 38. We have definitely been told by Drs. that there are to many unknowns and that we should continue masking, social distancing, etc; (our daughter is also immunocompromised) If anything happens to us, our daughter has NO ONE. We certainly can’t bare the thought of her being hospitalized with this horrid disease. And....... we live in Arkansas who is quickly running out of ICU beds and the vaccination rate is low. We had the Phizer, who they are now say has low efficacy against these new variants. In the meantime, my husband and I have noticed that everyone around us is behaving as if there is no virus. A new Costco opened and the parking lot is covered. We still order our groceries online and pull our car up for pickup, all our friends go to parties, vacations, out to eat, leaving my husband and I constantly questioning- are WE the crazy ones? In any case, we will joyfully stay in hibernation mode. My prayers are with you as you face the school year.

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Margitta Hapke avatar

Margitta Hapke

You are correct, we do the same as you . Due to these Ignorant ppl Covid keeps going

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Margitta Hapke avatar

Margitta Hapke

Again Lisa I feel and do just as you do. So does my husband, who is 73 y. And just had a complete break down due to my illness. Systemic Scleroderma and Systemic Lupus together are plain hell. Every day rollercoaster. Keep on doing your great work!

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Bev and George Theofelis avatar

Bev and George Theofelis

I am writing this on behalf of my husband and myself, 80 and 85 years old, and from the perspective of parents who who have always expected to precede our children in death. Constantly, we are torn between our own feelings about the situation we have been placed in, and trying to do what we think is the "right thing" so as not to endanger our son's health. He has been able to keep an extremely positive attitude which helps to keep the family in the same frame of mind. However, with all of the problems developing in our Country, we are starting to find ourselves on opposite sides and unable to come together on anything. Unkind and hurtful words are more the norm in our phone conversations. Having the freedom to visit makes us realize that life is too short to spend last days like this anymore. We try to understand that these explosive episodes come from fear and anger on all our parts, not only from having to deal with the "state of our Country", but with the "state of our son" and the "state of us. Phone calls with or without apologies are becoming fewer and far between because we can't seem to focus on the things that should really matter at this time in our lives.

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Lisa Weber avatar

Lisa Weber

There's so much to deal with right now. Just take it day by day. I find it helpful to ask myself this question before I respond to others, "If this is the last thing we talk about it, will I regret it?" That helps me keep the focus on those important things you mentioned. Best wishes to you and your family.

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