About Lupus

Jessica’s Coping with Lupus Corner

Dealing with Lupus Fog

Jessica Rowshandel, M.S.W.
Jessica, Rowshandel, M.S.W.
Director of Social Services
S.L.E. Lupus Foundation

Dear Jessica,

I feel a huge sense of loss because of lupus “brain fog.” I feel that the fog is getting worse and I am finding it hard to hide this around my friends and family. Do you have any suggestions?

–K.P.


Dear K.P.,

Many patients have told me about their experiences with what they, like you, call “brain fog.” They say they have trouble remembering things and can’t think as clearly as they used to. It can be very alarming when this happens.

Loss can be felt on many levels, from the practical loss of memory and the ability to think clearly to the general loss of what makes you uniquely you—your identity. People tell me all the time about the things they haven’t been able to do anymore because of lupus. Many have had to come to terms with these losses by redefining themselves and finding a “new normal.”

Doing this takes time. It’s a process that involves coming to terms with the way you now think and remember. This loss can be very difficult, but it does not mean you are defeated.

Meanwhile, there are practical things you can do to help your memory and fight back against “lupus fog”:

  • Make “To Do” lists to keep track of your tasks. People say, and I agree, that it feels so good to cross things off the list, so not only will it help you remember, but you could feel a great sense of accomplishment.
  • Use a calendar to remind you of appointments; electronic calendars can even be set to send you reminders.
  • Use alarms to help you remember tasks and appointments. Many cell phones have a built-in scheduler with an alarm.
  • Use a Days-of-the-Week pill box or other type of pill organizer to monitor when to take medication. Some even come with alarms.
  • Keep belongings in obvious places, and always in the same place. For example, always place your keys on a hook near the door, or your cell phone charger in your purse. It’s a comfort to know where things are!
  • Declutter. Being organized will help you find things. And letting go of unnecessary items can feel surprisingly liberating.
  • Label drawers, cabinets and shelves if you need help remembering how you organized your things.
  • Stock up on Post-It notes and place them strategically, where you’ll actually see them! Do you have to remember to pick up paper towel tomorrow? Write it on a Post-It and stick it on your front door. You’ll see it on your way out.
  • Keep a pen and pad on you at all times – in your pocket or purse. If you are out and about and happen to spontaneously remember something or are told something important that you don’t want to forget, you have a way to make sure you remember the information later.
  • Leave yourself voice messages on your cell phone or voice mail.
  • Keep a little digital camera in your purse to take pics and remind you of places you’ve been and things you’ve done. Cell phone cameras work for this too. Download and organize every month or so, to jog your memory and keep track of where you’ve been and what you’ve done…

If you are in the middle of a fog and are feeling frustrated or upset, don’t forget to pause and breathe. Remember that these challenges do not define you or your intelligence. You will get through the moment.

Take a pause, keep a diary

In the same way it’s helpful to declutter your home, it’s helpful to declutter your mind.

Try deep breathing and meditation, both of which can help relax your body and release tension as well as clear your mind. Try to let go of frustrations, worries, pressures, and unhelpful thoughts hanging out in there. In addition to instructional DVDs, “deep breathing” machines for high blood pressure can help guide you to slow your breathing, and “guided” meditation can be learned online and through CDs and MP3s. Your local library likely has options.

Many people find it helpful to keep a diary of when these fogs occur, how long they last, and what you were doing at the time they happened. You can also keep track of strategies you used to work through the fog and reflect on which worked and which did not work.

Time to take another step

If you feel that the “lupus fog” is progressing, you might feel very scared. Please be sure to talk with your rheumatologist about what you are experiencing—whether the lupus fog is getting worse or not, in fact. The doctor might send you to a neurologist for further testing.

Remember to bring your “fog” diary with you so you can show the doctor very detailed information about how your thinking and memory is being affected. You are your best advocate!

Do you have any tips to share on how to deal with lupus fog? Please comment below.

And for more information on how lupus can affect thinking, memory and behavior, check out this article on Lupus: Thinking, Memory and Behavior and Can Lupus Affect My Brain?


Update: We are no longer accepting comments on our site, but please share your thoughts on our Facebook page.

Ask Jessica!

Disclaimer: This website and its contents are designed for educational purposes only. Jessica Rowshandel, MSW is the S.L.E. Lupus Foundation’s Director of Social Services. She is not a physician. The advice provided is for educational and informational purposes and the Foundation does not recommend or endorse any particular treatment or therapy. The information provided here should not be used for the purposes of diagnosing or treating a medical or psychiatric illness. It is not intended to be a substitute for professional care. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care. If you have or suspect you may have a health problem, you should consult your health care provider. Telephone calls, emails, and online content do not constitute counseling services in any way. The S.L.E. Lupus Foundation does not provide any medical or psychological services to its patients and users. For an accurate medical or mental health evaluation, participants should seek an evaluation from a qualified healthcare professional. S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.