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Lupus, Brain Fog, and Me

by | Feb 14, 2022

I was 13 years old when I was diagnosed with lupus and started experiencing Brain Fog.  I didn’t expect much about my life to change after receiving my diagnosis. At the time, I had no idea that lupus would have menacing effects on my brain that would continue into my adulthood; in fact, I didn’t know that lupus would impact any aspect of my brain.

The First Time I Experienced Brain Fog

I was at work. I began working at a local car dealership as a sophomore in high school where I was mainly tasked with answering the phone and organizing files. I answered a call that was meant to be transferred to sales; I put the call on hold, and then suddenly realized I didn’t know what the next step was despite having transferred hundreds of calls as an employee. I felt scared and embarrassed – how was it possible that I couldn’t remember something as simple as hitting a button on a telephone keypad? I hung up the phone and crossed my fingers that when the customer called back, another one of my coworkers would pick up the phone instead. 

That evening, I told my mom about what had happened, and we began researching the term “brain fog” to better understand what I had experienced. Through reading articles and personal experiences, I began to feel comforted to know that brain fog was typically only a temporary loss of cognitive functioning, but I began to fear when it would strike. There was no telling when I might begin to lose my words, recent memories, or the ability to do simple tasks like tie my shoes. I had to become creative in order to thwart brain fog as I completed my high school courses; I took extensive notes during class, diligently kept a planner, and wrote and rewrote lists of things that I needed to remember. I learned that using mnemonic devices, a learning technique used to improve memory, was useful in studying for tests and quizzes. I also prioritized a healthy sleep schedule and leaned on my mom for support when tough brain fog days resulted in tears during math exams. These small things helped to combat the worst of my brain fog and helped me to better prepare for the moments in which I couldn’t remember anything at all.

Brain Fog and Anxiety

I graduated from high school as valedictorian and took some time off before pursuing a bachelor’s degree. When I was accepted into college, I made sure to make a stop at accessibility services to see if I could receive accommodations for lupus and brain fog. Unfortunately, I was told that I did not meet the qualifications for accommodations, and I would have to make do without extra time on assignments and exams. Once again, I felt my anxiety surrounding brain fog flare as I envisioned failed exams, poor presentations in class, and forgotten assignments when brain fog decided to rear its ugly head. However, I remembered all my tools I used during high school and slowly reincorporated them back into my life, while also using new tools and skills, like mindfulness, making outlines for assignments, creating study materials at least two weeks in advance before exams, and making sure to take 15 credit hours or less to manage my workload. It wasn’t easy, but utilizing these tools made my college experience much smoother.

How Brain Fog Helped Me

To my surprise, brain fog became a much more important component of my time in college than I could have ever imagined. During my second semester, I got involved in undergraduate research. My mentor saw how much I enjoyed conducting research and helped me to apply to a summer undergraduate research program at my university where she would help me to run any study that I pleased. It wasn’t hard to pick a topic: I wanted to research cognitive impairment in people with lupus and understand how physical symptoms and the environment lead to experiencing brain fog.

Two years later, in 2020, I began a more sophisticated project dedicated to understanding how people with chronic conditions, including people with lupus, experience brain fog. Although brain fog is very common in people with chronic conditions, it does not currently have a formal definition. Without a formal definition, it can be difficult for researchers and physicians to make advancements in the understanding of brain fog. I decided to design a study where I would interview people who experience brain fog and ask them a simple question: how would you describe brain fog to someone who has never experienced it before?

With the help of multiple chronic illness organizations, including the Lupus Foundation of America, my call for participants was spread far and wide. Over the course of six months, I interviewed 88 people who experienced brain fog, a groundbreaking number of participants for a qualitative study. I found that participants were excited to share their experiences with brain fog because very few people ever asked about the experience and because it is so misunderstood. I am grateful for their contributions and their courage to speak about a symptom that can be so life-altering and frightening to experience. 

As I continue to work on my brain fog research, I have come to realize that while suffering from brain fog has put many obstacles before me, my insight into the symptom is valuable to share with others. It helps to promote understanding and awareness for those that don’t experience brain fog and it helps those that experience brain fog to know that they are not alone and that there are strategies to overcome this symptom; my insights are valuable to researchers and physicians as they work to understand and treat brain fog. It’s difficult to find many silver linings with a diagnosis of lupus, but I’d like to think that I’ve found one in utilizing my symptoms to promote brain fog research and understanding.

Additional reading:

Lupus & You: Lupus and the brain

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