The Mighty Logo

To People With Chronic Illness Who Aren't Sure About Getting the COVID-19 Vaccine

The most helpful emails in health
Browse our free newsletters

As a chronic illness and pain patient, it is frightening to be in a position where you’re unsure about whether or not you should get the vaccine. On one hand, the world is experiencing this devastating virus called COVID-19 that is killing millions of people around the world and leaving others with chronic symptoms months after. A recent study found that 34% of COVID-19 survivors received a diagnosis for a neurological or psychological condition within six months of their infection, according to the study published in the journal Lancet Psychiatry. And it is worse for those of us with chronic illnesses and complex medical conditions who are immune-compromised because many of our doctors have informed us we will likely be hospitalized or die if we get it.

On the other hand, we have this vaccine available that is supposed to protect us (or at least be another safety barrier) from the virus that arrived in record time, but hasn’t been specifically tested on our population. Sure, we have seen the statistics that show most everyone who is susceptible to allergies and sensitivities should be fine unless you are allergic to one of the active ingredients in the vaccine. Oh, and they monitor you for 15-30 minutes after, right? That should be enough…

Well, I’m here to tell you that it’s OK if that does little to curb your fears. Why? Well, for one, most of us who live with chronic illnesses and pain have heard time and time again one thing or another to ease our minds from healthcare providers that has turned out differently. We have also been through horror stories ourselves with side effects and rare side effects on top of experiencing paradoxical (opposite) effects of medications. And if we haven’t been through anything like this ourselves, we know many in our chronic illness communities who have gone through these things.

We are also aware of the plethora of mistakes that are made in the medical community — many of us have experienced these patient errors, which are the third leading cause of death in the United States (yes, look it up), although now with COVID that might have moved down on the list. So, in our anxiety-ridden minds, anything can happen and we don’t want to be guinea pigs anymore!

On top of all this, given what happened to the chronic illness and pain community with the controversial rollout of the CDC guidelines in 2016 and ongoing issues (if you know, then you know) that are still greatly impacting patients and compassionate physicians, it’s no shock that many of us have a hard time trusting any CDC guidelines at this point. And I think our skepticism is justified.

So given all of this background, what are we supposed to do? What is the right decision for us? Do we get the vaccine or not? 

Well, I can only speak and act for myself. I will admit I was leery about getting the vaccine. My mom pleaded with me to get it. I told her I just wanted to wait a little bit to see how others in the community fared with it. But a funny thing happened. I started doing more research. And I asked questions. And I started to learn the facts and statistics of the vaccine. I spoke to my doctors (and listened to other specialists with my chronic illnesses) who all recommended I/we get it. I saw the information in my own support group (and others) of those who had gotten it, and had minor side effects, and even one woman who said her pain/symptoms got better after the vaccine!

So after taking all of this research and information into consideration, the deciding factor for me came down to one key question — did I want to risk getting COVID-19 and all the potential issues and even death or did I want to risk getting side effects or even a rare side effect from the vaccine? To me, the answer became clear in that moment. To be frank, it was essentially making a decision of the lesser of two evils. I would get the vaccine!

I decided to get the vaccine as soon as it was available to me (actually before with a doctor’s note of medical necessity). With the first shot (I got Pfizer), I had a very sore arm for a day or so, and a minor symptom of shortness of breath very temporarily as well as a low-grade fever (which might have actually been from something else since I get these symptoms on occasion anyways) but that was it! Easy peasy!

After the second shot, I had the very sore arm again and was a little more fatigued than normal (which again, could have just been from overdoing an activity). But, about three to four days after my second shot, a funny thing happened — similar to the other woman in my group, I felt better! My overall pain/symptoms have been feeling better than they normally do ever since (my second shot was April 9) and I’ve been sleeping much better than I normally do as well (I have very bad painsomnia). Most important, I feel much safer when I go to the grocery store or am around family and friends. Despite still needing to take all precautions — again, the vaccine is just another layer of protection after all — my “COVID anxiety” is reduced significantly and I feel like I can slowly dip my toe out into society again. It’s a wonderful feeling! All of the people I have spoken to with chronic illnesses feel the exact same way.

The bottom line is that everyone has to make the decision about getting the vaccine for themselves. It is your body and therefore your decision. And you should never make any decision like this lightly, nor let anyone make you feel badly for your decision either way. But we also have to be mindful that getting the vaccine is not just about us. Just like taking precautions and protecting ourselves from COVID-19 is not just about us. Rather, it’s about helping our communities, society and world as a whole. The sooner a greater portion of the population is more protected, the sooner the spread of COVID-19 will lessen so we can all get back to a more normal way of life again.

So whatever decision you make, I see you and I support you. And whatever you do, please continue to stay safe out there, my fellow chronic illness and pain warriors!

Getty image via sofirinaja

Originally published: May 19, 2021
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home