Sharing the Journey: Managing 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:

Brain fog is a common symptom of lupus. What are some things that help you best manage brain fog?

I find that for me, brain fog manifests mostly in forgetfulness. To combat this, I’m always making lists. I use the notes section of my phone to jot down anything when it comes to me. Then, at the start of each day, I check my notes to see what I need to remember that day. I have long-term to-do lists as well, where I add something that I don't want to forget in a few months. Brain fog also means I often misplace my things and can't remember where I put them. Reminding friends and loved ones that I'm working through some brain fog when I lose my phone for the 30th time will often help soothe their frustration. Lastly, when I am giving a speech or speaking in front of a group, I often lose my train of thought. I'll begin a sentence and then halfway through forget what I meant to say or how to say it. To combat this, I write down bullet points and bring a cheat sheet with me when I'm talking so I can look down and remind myself of my message when I am struggling. And, as always with anything lupus-related, a good night's sleep helps me be more mindful and articulate. Becca

I think the key to managing brain fog is to really stay organized. I have three calendars I use to keep myself on track: one on my phone, a monthly paper one so the whole family can see what’s on my schedule, and a weekly white board that I fill out so we all can hold each other accountable. Staying organized like this and having my family knowing what is going on everyday helps tremendously. Mistakes will happen still but less frequently. The other tip I have is to not overbook or stretch yourself. Living with lupus is tiring enough, so you need to be okay with scheduling times to rest. This way your body and your brain are getting proper recovery time. – Roxi 

I write everything down – even the smallest of things. It can be very frustrating but writing things down allows me to better keep track of my schedule, grocery lists, etc. – Kayla

Brain fog is a lupus symptom I struggle with very frequently. I have found that I need to act promptly whenever something comes to mind. If I don’t, I tend to lose my train of thought and forget what I am doing or saying. I use my phone daily to write myself notes so I have a back-up in case my brain tries to fail me. I also set reminder alerts so I do not miss anything important. I often have a hard time remembering words while in conversation. The words seem to be on the tip of my tongue, but I cannot produce them at that moment. It is imperative in these moments to be patient with yourself as you try to pin-point these words. Sooner or later, it will come to you. I also recommend being open and honest by explaining brain fog to those around you so in those moments they know to be patient with you and support you. Brain fog is something many of us deal with so don’t beat yourself up about it. You are not alone! – Angel 

I always feel like I’m experiencing brain fog. I feel like I’m constantly forgetting stuff and can never really focus on things. I have to ask people to repeat things all the time. It’s hard because I feel like I can’t always complete work at my job or during class. To deal with it I just try to make a list of the things that I need to do and reminders for those things so that I stay on top of everything, from my assignments to when I should take my medication. – Kyra

Cognitive dysfunction, also known as “brain fog” or “lupus fog” can be one of the more frustrating experiences of having lupus. Common symptoms of brain fog include confusion, fatigue and memory loss. It’s difficult to know how many people with lupus deal with brain fog because the estimates vary. But, just about everyone who has experienced this symptom agrees that it can make coping with your disease even more challenging.

Scientists don’t know for sure why people with lupus get brain fog, although a recent study may have found some clues. The lead researcher noted that the brains of people with lupus have to work harder to maintain the same level of performance as a person without lupus, which could lead to the symptoms of brain fog.

There are ways that you can cope with brain fog. Making lists, giving yourself more time in each day for your plans, and using technology and online tools to keep track of important information can make things easier. 

And remember that taking care of yourself in general by eating right,  exercising, and managing fatigue can also help.