Health behavioral scientist offers evidence-based cognitive strategies for living well with scleroderma.
Many people with scleroderma use the term “brain fog” to describe trouble remembering, focusing, or finding the right words. They often say, “I just do not feel like myself anymore.” Brain fog is not “all in your head.” It is a real and upsetting symptom. Over time, brain fog can affect work, relationships, and confidence.
Research shows that problems with memory, attention, and decision making are common in scleroderma. In some studies, more than half of people report issues with thinking and memory. These challenges can make it harder to keep up with appointments, manage medications, or follow treatment or self-management plans.
The good news is that there are practical tools that can help. Cognitive compensatory strategies are simple techniques people can learn to support their brain in everyday life. They do not “cure” brain fog, but they give the brain extra structure and support so it can function as well as possible.
Some strategies focus on attention. For example, you can break big tasks into smaller steps, do one thing at a time, turn off the TV or put your phone in another room, and give yourself extra time to complete tasks. These steps can make it easier to stay focused and finish what you start. Other strategies help with organization and memory. Many people find it useful to keep a regular routine, use one main calendar for all appointments, and write to-do lists. It can also help to schedule the most mentally demanding tasks for the time of day when your energy is highest. Repeating important information out loud, confirming what someone said, or briefly reviewing notes after a phone call can help information “stick.”
Technology can be a powerful helper. Using reminder apps or phone alarms for medications, appointments, and family activities can reduce the stress and guilt that come with forgetting. Instead of relying only on your memory, you are building an “external memory system” that works together with your brain. Lifestyle and pacing strategies are important too. Fatigue, pain, poor sleep, and stress can make brain fog worse. Pacing your day, planning regular breaks, staying hydrated, and doing gentle movement such as stretching or chair exercises can support both your body and your mind.
Programs like the Brain Boost Program, funded by the National Scleroderma Foundation, which was adapted specifically for people with scleroderma from an evidence-based cognitive rehabilitation program, teach and practice these strategies in an online group setting co-led by me and a patient co-facilitator. One person shared how reassuring it was to learn that their “brain issues are not uncommon, just like other patients with my disease,” and that there were practical things they could do to feel more in control.
These strategies can also ease the emotional impact of brain fog. Many people describe feeling “drained” after a Zoom meeting, worrying about saying the wrong thing, or feeling “stupid” when they cannot find a word. Examples such as pausing to gather your thoughts, using notes during meetings, or gently asking others to slow down can restore confidence and make social situations less stressful.
You might think of cognitive strategies as a GPS for a driver traveling through fog. The roads are familiar, but it is easy to miss turns when you cannot see clearly. The GPS does not remove the fog, but it gives directions, reminders, and course corrections. In the same way, cognitive strategies help you get through your day with less stress and more confidence, even on the foggiest days.
Yen Chen, PhD
Dr. Chen is the 2025 recipient of the New Investigator Award from the National Scleroderma Foundation.
