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by Cory Anderson

Often, we talk about vaccines with the implication that they are only important for sick people or the elderly. Those of us who do yoga, eat kale, and workout are doing all the right things so maybe vaccines and flu shots matter less for us. I didn’t realize how pervasive this subconscious narrative was until I got COVID and then Long COVID and ME/CFS (an often post-viral condition characterized by post-exertional malaise, fatigue and sleep issues, cognitive impairment, loss of functioning, and more).*

From Marathons to Myalgic Encephalomyelitis

I have always been a pretty healthy person- low blood pressure, ideal bloodwork, annual physicals. I am also a vegetarian, I ran marathons, and I worked highly energetic, physical jobs (often for 10, sometimes even 16 hours a day). I did all the things I was supposed to do (including adding kale to my smoothies). But here is the catch- being low risk does not mean you are no risk. Just like being a good driver doesn’t guarantee that you won’t ever be in a car accident. 

So, while I was the epitome of low risk (and triple vaxxed), a COVID infection knocked me out hard, turned into Long COVID, and then left me, and millions like me, disabled with myalgic encephalomyelitis (ME/CFS). ME/CFS is a post-viral condition characterized by profound fatigue that doesn’t improve with rest, sleep problems, pain, and other symptoms that incapacitate multiple systems and disable even those with so-called mild cases.

On my best days, I have maybe 15% of the life I had before. I can’t work, can’t run errands, can’t leave the house without one or two layers of noise cancellation and someone to push my wheelchair. All my independence is gone except for having the capacity to make myself food…sometimes. Even that is never guaranteed from one meal to the next.

Did the Vaccine Work?

But if I was triple vaxxed, why didn’t the shots work? Should I not have bothered at all? Fair question, and you’re not the first person to ask me. I think of vaccines like a seatbelt. Your seatbelt doesn’t guarantee you won’t be in an accident. It doesn’t guarantee you won’t get hurt in an accident. But it does minimize your chances of an accident resulting in the worst possible scenario.  

There are plenty of days when I feel angry and betrayed that the vaccines didn’t protect me more, days when I feel the crushing grief over the life I had and may never get back. But even on the worst days, I would never undo getting those vaccinations. They may have done less than I wanted or expected, but I am alive and I will never not be grateful for that.

Post-Viral Syndromes: A Real Threat

It is so easy and so much more comfortable to think about viruses as dangerous only for people who aren’t healthy or who perhaps aren’t doing all the things we are doing to take care of ourselves. The reality is that post-viral conditions are massively disabling to millions of people, most of whom were healthy and doing the right things too. We aren’t as invincible as we want to feel, and since no one wants to be the voice of doom, the precariousness of our health doesn’t get talked about. ME/CFS is largely ignored by research, funding streams, and the medical community. If it wasn’t, maybe I would have better understood that COVID isn’t only dangerous while you’re infected: it’s dangerous afterward as well. 

Think about some things you are looking forward to right now: a concert? a hike? your niece’s birthday party? Now take them all away. Take away the option to go to the store when you’re out of milk. Take away the option to go to work, to class, to dance around your kitchen. I can’t promise you that your COVID booster or a flu shot will guarantee that you always have access to those things, but if it gives you a better chance of being at that party or going on that hike, isn’t that worth it? A car crash could disable you, so you wear your seatbelt. A virus can disable you just as much, if not more, so please, put on your proverbial vaccine seatbelt. 

And if you feel impervious and aren’t motivated to do it for yourself. Please do it for me, for your friends and family, your co-workers who are more at risk than you may know. If your immune system is prepared to protect you, it is also prepared to help prevent you from inadvertently infecting others.

What We Can and Can’t Control

I have spent more than a year working to regain even 5% of my life, a second infection (or any infection) could take that all away, could leave me unable to tolerate anything other than a life spent in bed with no light or sound. Your best friend could be the person who rolls the dice and ends up with Long COVID and no longer gets to see you or come to your birthday party. Your parents or your grandparents could have trouble breathing that lasts for months, if not forever. Your niece or nephew could lose their childhood to a post-viral condition. It’s an awful thing to think about and an awful thing to live through.

A lot of days, facing a condition with no treatment and a potentially life-long sentence leaves me feeling powerless. So much is out of my control and beyond my reach now. But I can choose to get my booster and take the steps that are in my control to protect myself and those around me. I hope you will too.

Cory Anderson is an actor and bakery owner who now spends most of her time reading, knitting, and snuggling with her stuffed animals while she rests. She is involved in patient advocacy and outreach through ME Action and is an enthusiastic newlywed, sister, friend, aunt, and fairy godmother. Her story, like all others on this blog, was a voluntary submission. If you want to help make a difference, submit your own post by emailing us through our contact form. We depend on real people like you sharing experience to protect others from misinformation.

*ME/CFS (myalgic encephalomyelitis) is a post-viral condition affecting millions of people. There is little research, no treatment protocol and most doctors are unaware of the condition which means most patients go undiagnosed and unsupported. ME/CFS faces a lot of stigma as being “just fatigue” and that misunderstanding also leads to a lot of confusion between chronic fatigue as a symptom vs. Chronic Fatigue Syndrome. It is estimated that 50% of Long COVID patients meet the diagnostic criteria for ME. Learn more at www.meaction.net and, if you are experiencing post exertional malaise, please stop, rest, pace. 

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