One Step at a Time
By, Cailyn Dougherty
After getting the Covid vaccines, I went from being moderately active to being unable to function. Within hours of the first vaccine shot, I kept overheating and passing out. My heart was racing in my chest, and I thought I was having an asthma attack, but the medication didn’t help. In total, on the first night, I passed out four times. I went to see my PCP, who told me it was likely anxiety and to get the second vaccine as it would benefit me more than harm me. I’ve always reacted funny to vaccines but trusted in my physician as the expert. Within hours of getting the second vaccine, my cheeks turned bright red, I couldn’t stand, and I began to overheat and pass out again. I would only pass out upon standing, and it was almost instantaneous.
Of course, I followed up, once more, with my PCP about my fear and confusion. Once more, I was told it was anxiety. No matter how much I begged and pleaded, she wouldn’t listen. Finally, I was “allowed” to see a Pulmonary doctor as it was thought it was asthma related. After a year and a half, I was informally diagnosed with Autonomic Dysfunction, aka Dysautonomia. Within 2 years, I received my official and formal diagnosis after a tilt test confirmed it.
My doctor theorizes that I may have had a very mild version of this condition before getting the Covid vaccine, which triggered it to become severe. He thinks this because I had a relatively active life before getting the vaccine versus afterward. I went from being able to work out or do cardio for an hour before the vaccine and afterward could barely make it 5 minutes.
While knowing the vaccine triggered this condition, it was comforting to see without it, if I had caught COVID, I would likely not have survived. Since becoming ill, I have dealt with a lot of loss of activities such as exercise, walking long distances, and general exhaustion. I had to learn to cope with my new lifestyle but, more importantly, how to advocate for myself in a world that does not think its patients are intelligent. I fought to the point of pure exhaustion with tears rolling down my face to be heard by medical staff, and finally was. Now, it is just about finding how these puzzle pieces fit together to come up with a medical plan of care, which I am in the process of doing.
The most devastating part is I had to walk away from almost a decade as a public school teacher, leaving behind excellent students and faculty to better my health. I miss my students daily. Teaching was never a job for me. It was one of those things that set me on fire; it was an experience and an excellent opportunity to explore the world with my students. To engage in conversations about pop culture and tie it into lessons, and bring in technology to build skills for tomorrow. I am passionate about education and about providing students a place where they feel safe to take risks to learn and achieve. This horrible illness took from me the ability to impart wisdom, laugh, and grow together in the learning process. It's heartbreaking that I got the vaccine to stay with them, only for it to take me from them.
Luckily, I am refocusing myself and pursuing other avenues within academia to stay connected to the classroom in any way I can as I continue to work on my doctoral degree in Literacy. For those unfamiliar, Literacy is the ability to identify, understand, interpret, create, communicate and compute using printed and written materials associated with varying contexts. Literacy involves a continuum of learning in enabling individuals to achieve their goals, develop their knowledge and potential, and participate fully in their community and broader society. I aim to use this degree to help students in academia and assist in some way to better resources and communication for those with Dysautonomia.
It is challenging to balance this illness, flares, and work and school deadlines, but I am demanding to continue pushing and persevering over this condition. Some people have said my expectations of feeling better soon than later are unrealistic; however, I do not. I have found in the medical field that the more you advocate for yourself, people show their true colors, which makes it easy to move on and find someone else who can assist.
If I could advise a newly diagnosed person, I would tell them to track their symptoms and research their condition beyond Google. There are a lot of reliable sources, such as Dysautonomia International, that can help you advocate for yourself. Don't be afraid to respectfully tell your doctor they are not listening or not appropriately informed about the condition. Bring your symptom tracker with you and your research. If they ask you to stop Googling things, gently remind them these resources are research-based, peer-reviewed studies by internationally recognized resources, etc. Doctors mean well. Sometimes they gaslight us not because they are cruel but because we are an outlier in a sea of WebMD readers. Be aware. Be knowledgeable. Another piece of advice would be to join a Dysautonomia support group to see what others are doing, what doctors they are having success with, and up-to-date research into our condition. Lastly, do not lose hope; this is not a closed door. While there is no cure for this condition, there are options to gaining ground on feeling better. Take it one step at a time.
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