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My last rheumatology appointment was at the end of January. There I sat with my N95 mask on, and my rheumatologist had nothing on his face — not even a surgical mask. I observed multiple patients in the waiting area wearing N95 masks, yet none of the staff were wearing any type of mask on their faces.
In the last couple of months, I had to take a Lyft to my local pharmacy to get my medication. My pharmacy is one of the busiest I have ever had — prior to COVID, it was a 24-hour operation. In that amount of time, I have seen one person wearing a mask, and I am confident it was for personal safety, not out of consideration or care for the patients they serve.
For the past eight months, after my hip injections went sideways and I pulled muscles in my right leg, I’ve had to rely on a cane. It feels like I have a bullseye on me whenever I go; I am hard to miss and yet no one misses me. I have been questioned by nurses, given the side-eye by doctors, looked up and down by strangers, stared at when out in public.
I do not have a choice. Here are the reasons that I cannot just decide to stop wearing a mask:
- I had COVID-19 in September 2023 and almost landed in the hospital.
- COVID-19 exacerbated my rare neurological disease; I am still sorting out the extra nerve damage/symptoms.
- COVID-19 caused my asthma to be worse.
- I get bi-weekly IVIG infusions that lower my immune system further.
- The combination of my IVIG infusions, biologic, DMARDs, pain meds, and steroids have wiped out my immune system so that it is basically equivalent to a cancer patient.
But I am okay with wearing a mask. I know what I need to do to look out for myself. For the past 12 years, I have had to make difficult choices for myself that no one around me has had to make. I have had to sacrifice jobs, the ability to socialize, and exercise. I have had to modify the relationships I have and even walk away from the ones I cannot handle. My chronic illnesses have required a complete lifestyle change from top to bottom. I accepted that a long time ago.
What I struggle with is the denial from those around me. As I scroll on social media and look around me, I feel like I am living in an alternate universe.
This began during lockdown in 2020, when I saw people refuse to see or accept what was around them, despite the devastating impact of COVID on entire families, cities, or communities. Logic did not win out. Care and kindness did not rule. My loved ones in other cities began to wear down inside and out. Even folks who took precautions became sick again and again because those around them ignored safety measures, mocking and defying the rules, and calling us ridiculous.
I understand the cruelty of humanity. The darkness of people. I know the conditional love and conditional kindness of people. I have felt it again and again. I grew up in a household with abuse, selfishness, and a very narcissistic anorexic mentally unstable mother. My parents divorced when I was very young, and my father bounced from job to job, so he did not have to pay child support. Any interaction with him had to do with fulfilling his selfish needs. He was (and is) an unbelievable, manipulative narcissistic drug addict who did not know the color of my eyes until I was 12 years old.
I am also autistic, which I only learned a couple of years ago, and I’ve struggled deeply with social interactions and faced a lot of rejection, not understanding what I did wrong or why I would suddenly not have friends. The few friends I did have were always trying to “fix” me or get something out of me. Anxiety, depression, and loneliness have been constant companions. Feeling suicidal came onboard around the age of 12.
Still, I was not prepared for how ugly, cruel, and selfish some people became surrounding wearing a mask. There are entire countries who wore masks on a regular basis before COVID-19 for safer breathing. Yet many nurses and health care providers fail to see masks as part of their uniform, and the public does not view masks as a piece of their clothing.
Masking for Me
Masking is absolutely a matter of life or death for me. Back in September when I had COVID, the only reason I did not end up in the hospital and on ECMO (extracorporeal membrane oxygenation) — on my deathbed — was because I was able to get Paxlovid. But it is not just COVID-19 that is a risk for me. A cold, sinus infection, the flu, monkey pox, HRV, chicken pox, and even strep throat are huge threats.
Most of us on biologics have had chicken pox as children. But that does not matter. Taking a biologic, based on any of the inserts I have read for every single medicine I have been on for 12 years, lowers my immune system enough that chicken pox is a huge risk. Some literature says I can even catch it through contact with contaminated items, such as diapers or clothing.
So, yes, others look at me like I have a bullseye on me when I go out in public with a mask. But I am not ashamed, and I will not be afraid to take care of myself. No one makes me feel bad or makes me change my mind. Instead, I walk around with a mask like it is a necessity. It is a piece of clothing. It is a part of me. I have to wear it because I do. Period.
Even though I wear a mask, it only protects me so much. I still cannot be in crowded places. I am still reliant on other people.
At this point, I have just accepted that I will be one of the few people wearing a mask. I do notice who wears a mask and who does not. I see who is willing to make a sacrifice and who looks out for their fellow person. I scan the people around me to see which people are willing to take me into consideration before they walk out that door.
And most of the time, I can get through it. But sometimes, just sometimes, depression hits. The sadness and overwhelming anxiety smother me. And the loneliness begins to darken the room. I feel so damn alone, more so than I have ever been. And I see no end in sight.
Put on a damn mask — please.
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