For me, brain fog is one of the most difficult side effects of primary biliary cholangitis (PBC) to deal with. I like to describe the feeling as walking around with a giant cloud over your head, weighing you down. The cloud feels heavy, and it’s difficult to see through. It also makes cognitive function and thinking quite strenuous.
For a lot of years before my PBC diagnosis, I didn’t realize I was experiencing cognitive impairment. I guess I thought I wasn’t thinking clearly because I was tired from running around a hospital at work for 13 hours a night.
What is PBC?
Primary biliary cholangitis (PBC) is a rare, chronic autoimmune disease that primarily affects the liver. In PBC, the body’s immune system mistakenly attacks the small bile ducts within the liver, causing inflammation and gradual destruction of these ducts. Bile, a substance essential for digesting fats and removing toxins, becomes trapped in the liver, leading to liver damage over time.
It’s funny how things become so much clearer after you receive a diagnosis and understand what it can do to you. It’s like a lightbulb goes off, and everything makes sense.
Learn more about PBC signs and symptoms
Brain fog has heavily affected my life and my future. It has also made day-to-day living a little more laborious. When I first started connecting the dots on brain fog and PBC, it was about eight months after my diagnosis. It was the end of summer 2020, and COVID-19 had taken over my job as a respiratory therapist.
Most of my shifts were spent working in an ICU and caring for COVID-19 patients on life support. My job was to manage patients’ airways and their breathing, as well as the ventilators breathing for them. As you can imagine, my job was incredibly intense, as it was even when there wasn’t a global respiratory pandemic.
Most days, my job was helping to manage life-or-death situations. In my hospital, respiratory therapists were in control of ventilator settings. So when a setting needed to be changed, my job was to think critically and make the best decision. With the brain fog I was experiencing at times, that became very scary. I was so afraid of missing something or making a wrong decision and putting my patient’s life at risk. There are a few reasons as to why I left working at the bedside, and brain fog was one of those reasons.
On my bad days, it’s hard to connect the dots in my thoughts. I feel like I’m constantly forgetting things, so I’ve started to make lists of things not to forget. Otherwise, I can’t guarantee I’ll remember anything. I have forgotten many things that my partner has told me. Or I forget that I need to take my weekly biologic, which needs to be taken at the same time every week. I remember one time I put my laundry in the washer. When I went to check on the remaining time, I realized I had never pressed the start button. Some days aren’t so bad, but other days I find it hard to make it through the day.
One of the biggest things I have had to learn since getting my PBC diagnosis is to give myself grace. When I’m having trouble remembering things or thinking clearly, I have to remind myself that it’s not my fault. And it’s OK if I’m struggling. Just because one day is pretty bad doesn’t mean that every day will be a battle. You have to take the bad days in stride. And be kind to yourself, even when you’re feeling down.
