Dear Diary, I'm Terrified of the COVID-19 Vaccine

December 2020

Dear Diary,

A vaccine for COVID-19 is available now, but I’m not going to get it. I developed bickerstaff brainstem encephalitis (BBE, a variant of GBS), a rare autoimmune disease, from a series of vaccines in 2009, and it almost killed me. The experience was horribly traumatizing, the rehab was excruciating, and I am permanently disabled because of it. There is no way I’m going through that again. Plus, it has been suggested that people who have had GBS should not get the vaccine. Besides, how well can we trust a new vaccine anyway? I’ll let everyone else get the vaccine, and hopefully I’ll be protected by herd immunity.

January 2021

Dear Diary,

Dr. Fauci and the CDC released a statement saying that the COVID-19 vaccine carries no increased risk for people who have had GBS. That’s good news, but I still won’t take the risk. I’m too scared, and it’s too soon for there to be any real data on the long term effects. Besides, mRNA technology is not new, but this is the first time it’s used in vaccines, so there is no information about rare side effects yet.

February 2021

Dear Diary,

Well, so far, I haven’t found any evidence of an increase in cases of GBS or any other autoimmune disorders as a result of the COVID-19 vaccine. (Although, there have been some cases of blood clots from the AstraZeneca vaccine, but it is extremely rare.) There is such little information about BBE, and the connection between vaccines and autoimmune disorders. I feel like I’m unable to make a logical, educated decision. It’s frustrating and frightening. So, I’m still not going to get the vaccine. I’m too scared to take the risk. Besides, if everyone around me gets it, I should be safe, right?

March 2021

Dear Diary,

I’ve been doing a lot of research in a desperate attempt to make an educated decision, rather than avoiding a decision based on fear. This pandemic just keeps dragging on, which means I’m continually at risk of getting COVID-19. Plus, there are others to think about besides myself. As far as I can tell, there have been no rare side effects from the mRNA vaccines. The viral vector vaccines run a very small risk of blood clots. However, the chances of getting seriously ill or dying from COVID-19 are far greater than they are of developing a rare side effect from any of the vaccines.

But I don’t know if that makes me feel any better. Getting the vaccine for my safety and for the safety of other people seems to make logical sense, but my traumatized “animal brain” still cowers and snaps fearfully at the idea.

April 2021

Dear Diary,

My physiatrist has advised me to get the vaccine. He has been with me through my entire journey since my hospitalization, and I trust him implicitly. He says that if I get COVID-19, with my lung damage and limited lung capacity, I am at a much greater risk of developing serious complications. But he says the risk of having another adverse reaction to a vaccine is no greater for me than for anyone else, regardless of my medical history. Besides, my illnesses developed after several vaccines, not just one. He reminded me, as well, that there is no guarantee that a vaccinated individual will not still carry the virus. So, even if everyone around me is vaccinated, I’m still vulnerable.

May 4, 2021

Dear Diary,

My physiatrist, general practitioner and both neurologists have all recommended getting the vaccine. The COVID-19 variants are causing a stir in the medical community because they spread easier and they are more severe. My doctors are not confident that herd immunity will be achieved, and hospital ICUs are still crowded. Because I am disabled, I am fearful of ending up in the hospital with COVID-19, not just because the risk of complications is higher for me, but because ableism could put my life at risk in triage. I don’t want to continue to live in fear of this virus. Plus, vaccine passports are now required for travel and may be required for other things in the future.

May 10, 2021

Dear Diary,

I’ve made an appointment to get the vaccine next week. I feel like I have made a logical, educated decision but I’m nervous as hell.

May 19, 2021

Dear Diary,

Today was the day. Last night, I had a terrible dream in which I got the vaccine, then began developing the same symptoms that appeared a decade ago. As a gowned and gloved doctor wearing a face shield was about to intubate me I woke up, sweating, shaking and feeling like I wanted to vomit.

With the help of my caregiver, I showered and dressed, then headed out for my appointment. My husband met me there, and we approached the front door. I calmly answered the volunteer’s questions, sanitized my hands and entered the building, letting my hubby lead the way. We approached a table, and I passed my paper and health care card to the volunteer sitting behind a computer, who gave me a clipboard with a form to fill out. We followed another volunteer to a gymnasium, and I was directed to park my chair in one of the dozens of partitioned spots. I filled out my form and waited, patiently calm. My husband chattered away about this and that, and I welcomed the distraction and warmth of his presence.

The nurse arrived and, as I answered her questions, I suddenly began to vibrate. I glanced at my husband and he nodded and smiled reassuringly. The nurse swabbed my arm, and I tightened my bicep reflexively.

“Just relax,” she said gently “It won’t hurt much.”

I glanced at hubby again. He rolled his eyes and smiled. He understands that it’s not the pain that I’m afraid of. I took a deep breath, felt a small sting, then a brief warm pressure. The needle slid out and I burst into tears. My muscles liquified as tension and anxiety melted and flowed from my body in a wash of warm tears. How embarrassing.

“Are you okay?” the nurse asked gently.

“I’m such a baby!” I sobbed.

My husband explained my reaction to the nurse, who smiled sympathetically, and advised us to wait for 15 minutes before leaving. My husband put his arm around me and whispered “It’s okay. Your tears are understandable.” As quickly as they started, the tears dried up and I waited my allotted 15 minutes listening to hubby’s distracting and comforting chatter. I suddenly felt exhausted!

It’s been nine hours now, and I’m going to bed early. My arm feels like it’s been punched, I feel a bit warm and I’m very tired. Common side effects, I’ve been told. No need to worry. Besides, if I’m going to have a rare reaction like last time, I won’t see symptoms for at least a week.

June 2, 2021

Dear Diary,

I have been composing this final entry in my head for the last two weeks, filling out sentences with positive phrases and closing paragraphs with happy endings. An attempt to control the outcome of a situation I have no control over, I suppose. I have been acutely aware of my body and its behaviour, vigilantly watching for any sign of weakness or vision impairment. I staved off my anxiety by picturing my little immuno-army training furiously in preparation for a potential ‘Rona invasion, learning how to block, parry and destroy a ‘Rona soldier’s sticky arms. All the troops lined up in neat little rows, cooperating and communicating, no sign of mutiny or “loose cannons” going rogue.

I am happy to report no adverse reactions from my first vaccine, and I am so relieved! My anxiety has disappeared, and I feel a sense of peace I haven’t felt in over a year. It feels good to know that I am protected as much as possible, that I will be able to travel and attend public events without question, that I can hug my loved ones unmasked and that I can finally kiss my husband again!

Despite all that worry and fear, everything turned out fine. But, I’m not going to start gaslighting myself now by saying my fears were silly, unnecessary or unfounded. The trauma I experienced 10 years ago had a massive impact on my physical and mental health, so it’s no surprise that I still react with fear at even the remote possibility of experiencing anything like that again. Besides, those feelings were what started me on the path to doing the research I needed to make a decision that I was comfortable with.

To anyone who is currently struggling with making a decision about getting the COVID-19 vaccine because of medical reasons or past trauma, I get it. You are not alone. Only you can make this decision for yourself . Do as much research as you need to, ask as many questions as you must, and make the decision you are most comfortable with. To anyone who is unable to get vaccinated for medical reasons– I, for one, have your back. I respect your right to health and safety along with everyone else’s, and will continue to wear a mask in public spaces and upon request. Hopefully, together, with a little empathy and cooperation, we can protect everyone as we strive to end this pandemic.