Myalgic Encephalomyelitis and COVID-19: Can I Be Vaccinated?

Content warning: TMI, mental health.

Several friends have asked me whether I can be vaccinated and I’ve answered them individually. I’ve even written about it a couple times and stopped short of hitting the post button because the potential for comments on the topic has felt too stressful. But I’ve gotten the query enough times now that I guess I should put this out more widely.

When I became Dr. Cheney’s patient in 2009 and he learned that my descent into ME had been triggered by my first-ever flu shot, he told me that I should not be vaccinated again unless it could not be avoided.

I’m still undecided about whether this can be avoided.

I do realize that my ME friends who rely on home health aids don’t have the privilege to avoid it.

I am following some groups and polls about ME patients’ response to the vaccine. Some people have done fine; some have had temporary exacerbation of their symptoms; some have developed new symptoms and/or have been knocked down in a way that’s yet to abate.

Frankly, the idea of taking the vaccine is terrifying to me because of that last possibility. I have such crazy reactions to so many ordinary things, I’m already so debilitated, and it could potentially make me permanently worse, and I fear that there might be an “or worse,” and once it’s injected there’s both no undoing it and a long time to wait to see what the total effect will be.

That circumstance, and truthfully, this whole pandemic, has proved precisely calibrated to my lifelong anxiety about control of bodily integrity.

That probably has some roots in my dad’s three bouts of Hodgkin’s between the time I was three and the time I was seven.

I just had the bad luck to have my body manifest such that that anxiety is in the forefront of my experience in a way that’s well-nigh unavoidable.

Late this winter, I bought a PAPR because I knew eventually the doctor’s office was going to stop being willing to send practitioners out into the parking lot and insist I come into the building, and I knew I couldn’t manage my terror about that short of that degree of protection.

My mom always says I have a good face for hats, but I don’t feel like it extends quite as far as a PAPR hood.

I recognize that that to buy a PAPR, too, is privilege. Not everybody has the funds to do that.

Even with the PAPR, the last time I wore it, I was so exhausted by the time I got back from the doctor’s appointment that I took it off wrong – the head covering brushed my nostrils as I removed it – and for the last 13 days I’ve had to constantly tamp down my anxiety that that was enough to cause me to catch COVID-19.

The random ME sore throat has popped up a few times in those 13 days and let me tell you, that is plenty enough for a catastrophizing spiral.

I know this is unreasonable, but that is what anxiety is.

Chimp has recently learned that as my caregiver, he qualifies as 1A. So he has begun the process of trying to get a vaccine appointment.

I bought a larger head cover for the PAPR that will fit him, because I’m terrified that he’ll catch it at the vaccine appointment. (Yes, more privilege.)

To watch the world already champing at the bit to go back to normal is really not helping. Things are not normal, there is no current indication that they will soon be normal, and watching people behave as if they are makes me feel even more in danger.

At the moment, I am having a hard time believing that the world will *ever* go back to being safe for me. What about the very real possibility that this becomes endemic?

Someday Chimp will *have* to go back to teaching in person, and what might happen if I don’t get vaccinated by then? Almost all his students live in dorms, and dorms have the potential to be pretty serious disease vectors. I can tell you that from the number of colds he’s gotten over the years.

So no, I should probably not be vaccinated, but I may have to be, and I feel like I have no basis to reassure myself that it will probably be okay.

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3 Responses to Myalgic Encephalomyelitis and COVID-19: Can I Be Vaccinated?

  1. *Gentle Hugs* I’m sorry you are in such a difficult position and I hope you are able to continue to stay safe. I’m keeping my fingers crossed that enough healthy people make the choice to get vaccinated that it is able to protect people like you who may not be able to get it. I am fortunate that my doctor is happy for me to have it, as I have never had a major issue with any vaccination so it’s unlikely to be a problem (though as someone who’s immunocompromised I know it won’t give me the same degree of protection as it will for healthy people).

    • Jocelyn says:

      Thanks, FFF! I hope it goes very smoothly for you. Chimp had his first dose yesterday and is glad he can contribute to herd immunity.

  2. Libby says:

    I live in hope and aversion of risk. I know the whole thing induces massive anxiety, and a person can only make a decision with the best available information a person has at the time of making that decision. Glad Chimp has had his first dose.

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