Never-Ending Concern

By Anita Williams

2 min read

We are now entering what some are calling the post-COVID, or after-COVID, era. I am seeing the shorthand PCE or ACE more often. This means that rather than facing a pandemic, we are living through an endemic. COVID-19 is here to stay.

Living with MS and COVID fears

As a community of people living with multiple sclerosis (MS), we are starting to figure out how to navigate this new landscape. I have written previously about what life could be like after COVID. I can only say that, this is not quite what I had expected. I am still concerned. I may be vaccinated and double boosted, but I do not know that I am as protected as someone living without MS. We do not have the data to show otherwise.

Regulations fall

This country has seen the expiration of many regulations regarding mask-wearing. The CDC has changed guidelines to eliminate the need to wear masks indoors.¹

Many state and local leaders have followed suit. As the population continues to get restless and COVID-related deaths are no longer in our faces 24/7, life seems to be moving on. The immunocompromised, which includes multiple sclerosis patients, are watching carefully.

COVID is no longer leading the news cycle or dominating social feeds. Maskless faces are not startling. From the safety of my vehicle, I watch as more and more people ditch their face coverings. As a person living with MS, it is a gut punch. It is just another step towards learning to live with this deadly virus.

An endemic? What's that like?

Rather than stamping out COVID-19, the current goal seems to be accepting that it exists and will continue to kill many people every day. Vaccinations, post-infection interventions, and other lifesaving methods are simply a part of our national lexicon.

Coming down with COVID is now said to be inevitable. Many of us living with multiple sclerosis, work so hard to stay safe, yet are still being infected with the virus. I guess we are to shrug our collective shoulders and march on towards life activities as there were prior to the beginning of 2020. That may work for some. Me? I am fearful.

The fear is not going away

A large portion of the U.S. is celebrating the "end" of COVID. They are stepping outside tentatively without masks. I am not one of them. I keep a stash of N95 and KN95 masks in my vehicle and purse. I do not want to be without one, just yet.

The risks associated with COVID-19 do not just disappear. Living with MS means that vaccinations may not be as effective as it is in other populations. Hospitalization as a result of being infected is real. Even if my chances are reduced, I know that COVID could be a killer for me where it is becoming a nuisance to others.²

I’m not changing

As I wrote earlier, I am vaccinated and double boosted. I understand that I am likely to stay out of the hospital should I catch COVID-19.²

This is something I know intellectually. I trust science. Yet, I am just a bit wary of this PCE or ACE existence. I would like to join the maskless soon. Just not right now.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Therry Neilsen Moderator & Contributor
Anita, you are not alone! I still wear my mask under almost all circumstances, particularly when I attend a movie or a live performance. I remember VIVIDLY what happened when I went to the grocery store without a mask. Whammo! I caught a horrible cold and it lasted kind of longer than a cold usually does -- six weeks! I read an article about this very subject, and one of the points the author made was that the need for masks has not diminished, but our tolerance for them has vanished. Regulations regarding their use has not kept up with the need for them. Keep on wearing your KN95s and your N95s, and take care when you're out and about. I hear your concern, and you're so right to have it. Much love and Happy Thanksgiving, Therry, a Team Member
Lisa Emrich Moderator & Contributor
Anita, I'm right there with you. I still haven't attended any large gatherings. I can't even imagine what it might be like to ever go to the movie theater again. Before Covid, almost any trip to the mall prompted a cold similar to Therry's description. Icky germs everywhere. The one thing that gives me hope at this time is that my husband developed Covid in June and I did not. I was double-boosted at the time (which had no impact on my antibodies), but also had been lucky enough to access Evusheld. I have to believe that it made a difference. I'll keep wearing my masks just like you for some time. Big hugs, Lisa
jenniem Member
Anita - YES! I'm at my 5th COVID vax as of last Saturday. I was pleased to get the email that I was eligible to get it. Bivalent? Sure, gimme that jab, courtesy of my provincial government 😉. I'm on an MS therapy that suppresses my immune system, so in case I'm not ramping up the antibody response the way I might otherwise, I'm happy to get "boosted." Like you, I'm ambivalent about the masks coming off. When my teen son told me yesterday that he's finally chosen not to wear a mask at school, I went "gulp." Even though most other students apparently stopped a while ago, my lad stopping still gives me pause. We just had a week plus of 'family' respiratory virus (head cold or flu, not COVID according to home tests - phew) - the kind we hadn't seen for YEARS! I'm pointing my snarky finger at a newly blase culture of "masks off" 🤬. I cry "too soon!"
foohbear Member
I still wear my mask too and people look at me like I’m crazy. I don’t fight infections very well because of my MS and I don’t want to get long COVID cog fog on top of the cog fog I already have from MS. So I’ll keep wearing my mask. 
1. Lori Foster Member
 Hi <inline-mention username="foohbear" user-id="4081086"/>. You are not alone. I still see lots of people wearing masks. I hope you don't let those people get to you. Your health is too important. Best wishes. - Lori (Team Member)

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