Sharing the Journey: Lupus Brain Fog

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What tips or coping skills have helped you improve your concentration and lessen “lupus brain fog” confusion?

I enjoy reading books to help improve my concentration. I feel like it keeps the mind stimulated and active. I'll also play puzzle games on my phone such as Sudoku, puzzle block and mystery games. I think that there are simple ways to help us deal with these symptoms in everyday life; we just have to figure out what works best for us. If you're not into reading or games then I suggest trying an exercise. It doesn't have to be drastic. It could be as light as yoga or swimming. I’ve found that cooking small meals and following recipes help. I noticed that along with my concentration my memory is not in the best shape that it used to be. I'll try to read the recipe a couple of times and then see how much I can remember, hoping to remember a little more each time. I hope this helps someone.  – Hilnecia L.

I keep calendars with color coding for each member in my family with each of their activities. I also put everything in my phone, and have a small weekly white board that I use. This way I can double and triple check if need be. Even with all these reminders I still have forgetful moments. I feel like sometimes it is hard to pull forward a past memory or even find the “right word” at times. A lot of people think it’s silly and say “you’re too young for that” because they don’t realize the effect lupus has on the brain. Most of the time I try and brush it off, but inside it scares me to think that I may not be completely clear at times. – Roxi A.

Brain fog has become a serious issue I've had to face being a law student. Knowing that I already have this condition that makes me get confused or forget things, I have to really enforce my reminder/ memory enforcing skills. For everyday life, I have a planner which I use religiously, as well as post-it notes and phone reminders. I often tell someone else something that I need to remember so that they can remind me. Brain fog as it relates to school is a whole other issue, which I have learned to manage through study aids and skills such as flashcards and white-board repetition.  – Kayla B.

Every time my lupus flares, I find that my odd symptoms (those apart from the usual exhaustion, joint swelling, and mouth sores) such as vision disturbances and brain fog tend to surface. Brain fog especially frustrates me because it makes it difficult for me to focus and articulate my ideas at school. Through long nights of struggling to write papers to embarrassing moments in class when I just couldn't find the right words to answer my professor's question, I developed several strategies to help me cope with this symptom. First, I always try to prioritize sleep. Sleep is important for regular cognitive functions, so it makes sense that sleep would have an impact on the severity of brain fog resulting from lupus. More sleep equals clearer, sounder, and quicker thinking. Second, I try to write lists as often as I can. It's easy to forget things when brain fog sets in, so I try to set alarms or make to do lists to help me remember easy tasks that may slip my mind later. Even in class, I try to write down a few talking points before I raise my hand to answer a question so that I will remember the point I wanted to make. Overall, though, I think the most important thing you can do when brain fog sets in, is to give yourself grace. It's okay that you may forget things a few times. When you look around at others and see their lifestyle, it is easy to beat yourself up for not being as quick or energetic as them. It is so important to forgive yourself for your mistakes. It's not your fault that you have lupus, and you are doing the best you can to deal with the symptoms. – Becca M.

Brain fog is an extremely uncomfortable and frustrating feeling. It impacted me the most through college as I was just being diagnosed, and I was untreated and unsure of the implications of my disease. It angered me to never be able to remember things for exams, when I spent so much of my time trying to gain as much knowledge as I can. I didn't want to admit lupus was doing this to me. However, some good came out of it! I ended up setting aside "me time" during the day, where before, I never gave my mind a break. I reflected on my day, listened to calming music, and learned to get plenty of sleep; which helped my overall health as well as my mental health. Also, letting those that are close to you know what you are dealing with will help them be patient when you're having a bad day. It is important to be proactive and vocal. – Brittany W.

To me, the best thing to do when dealing with brain fog is to not think too hard about it. I know that sounds counter intuitive, but when you freak out about it, for me personally, that makes it worse. If I try to calm down and not think too hard, I usually get the clarity I need. If I try or think too hard, it makes it worse. – Leslie R.

I have gotten creative and use intention and breath to send added oxygen and blood to my brain. I also exercise daily, which for me is walking. This is a wonderful time of year with the fall colors and the frost starting. I also do weights which, for me are at home, so I can play my own choice of music with that. And I focus on self-care which also adds to keeping me more alert and aware. All of these things help. I do prayers and send energy to the places of my body that need extra healing energy as well. – Betsy H.

Use These Tricks to Outsmart Brain Fog

Between 20 percent and 60 percent of people with lupus notice changes to their cognitive function—so if you are having trouble concentrating or struggling with memory issues, it’s not just you. And while lupus brain fog can make completing tasks more challenging, there are lots of things you can do to adapt:

• Write down important details and questions in a notebook
• Focus on doing one thing at a time
• If you’re having trouble thinking of a word, use a similar word you do remember
• Use visual cues to trigger your memory (like leaving out a hanger to remind yourself you need to do the laundry)

Check out coping with the cognitive symptoms of lupus to learn more about how you can take charge of your lupus brain fog.