Guest Voice: Living with MS in what people think is a post-COVID world

Anne Rosales is a mother of three grown children, grandmother, and community volunteer. She was diagnosed with multiple sclerosis (MS) in her mid-50s. She holds a Master of Business Administration from Stanford University and is a certified aging-in-place specialist. Rosales blogs about midlife health and wellness at JubilantAge.com.

Have you noticed? COVID-19 is over. Finished. Most people in the U.S. have stopped masking. Life is back to normal.

Only it’s not.

For those of us who’re immunocompromised, the post-COVID-19 path is unclear. Like many people with MS, I take a B-cell-depleting therapy, and that can diminish the effect of the COVID-19 vaccine. I hope being fully vaccinated will enable me to fight COVID-19 if I get it, but no one knows for sure.

Here are my thoughts on living with MS in a post-COVID-19 world.

Feeling out of place

It feels weird to be one of the only people still masking indoors at busy places like the grocery store. I worry that others will think I’m out of touch — or worse, that I’m paranoid. I’m not even sure I’m helping myself. How much protection does a mask provide me if no one else is wearing one?

I feel like I’m back in high school, making decisions in the face of peer pressure, wishing I could just fit in. I have to remind myself that, actually, I don’t fit in. I have a weaker immune system than most people around me.

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My post-COVID-19 rules

To make my choices simpler, I created some rules for post-COVID-19 behavior. My husband also follows them because he’s in close contact with me. For example:

• We mask in public places indoors.
• We avoid large crowds.
• We wear masks in airports and on planes.
• We don’t bother with masks when we dine out or see friends at home.

Rules like these put my COVID-19-related decisions on autopilot. I don’t evaluate the health risk of each situation but merely stick to my plan.

Don’t judge my choices and I won’t judge yours

My personal guidelines aren’t perfect, and I don’t practice them perfectly, either. At the same time, they help me feel I’m doing what I can to protect myself while still rejoining the larger world.

Earlier in the pandemic, I judged people who flaunted mask mandates. I considered those who wore masks below their noses or used them as chin warmers to be selfish and ill-mannered.

But now I’m learning to let it go. I’m trying to take responsibility for myself and not worry about others’ choices.

Obviously, this is a good lesson for other areas of life, too, but it’s not so easy to do!

The U.S. Centers for Disease Control and Prevention recommends high-risk people wear masks when national hospital admission rates are high. (Photo by Annie Barnett Photography)

Balancing competing risks

As someone who’s immunocompromised, I often feel like others are so focused on resuming life as they knew it before COVID-19 that they’ve lost sight of people like me.

Sometimes I think self-isolation might be the only way to stay healthy.

But I’ve decided to weigh my risk of infection from being with others against the risks of loneliness and depression from spending too much time alone.

Thus, as COVID-19 rates slow and disease severity lessens, I’m gradually reconnecting with my community.

As you consider how to live with MS in a post-COVID-19 world, don’t give up — and don’t give in, either. Balance the competing risks you face and choose your own path forward.

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