MS Navigators Help Patients Find Support Beyond the Diagnosis

Living with multiple sclerosis (MS) can bring daily challenges that are difficult for others to see, especially when symptoms like fatigue, pain, brain fog or temperature sensitivity are invisible. According to Denise Frey, an MS Navigator with the National Multiple Sclerosis Society, one of the most important things patients can do is learn how to advocate for themselves in ways that fit their own personality, family dynamics and lifestyle.

Frey emphasized that there is no “one size fits all” approach when it comes to discussing invisible symptoms with family members, friends or coworkers. Some people with MS feel comfortable openly discussing their needs, while others may only share details with close family members. She said patients should focus on finding communication strategies that feel realistic and supportive for them personally.

One important message Frey shared is that patients should avoid internalizing stress and emotions. Research has shown that stress can worsen MS symptoms, making emotional support an important part of care. For patients who feel uncomfortable discussing their experiences with loved ones, counseling or peer support may help provide a safe outlet.

Frey explained that MS Navigators are available not only to listen, but also to help patients problem-solve through difficult situations. Navigators can connect patients with MS specialists, employment resources, insurance guidance, emotional support and local or virtual support groups. They can also help patients understand workplace rights, benefits, home modification resources and assistive technologies that may improve quality of life.

The National Multiple Sclerosis Society also offers educational materials such as the “But You Look So Good!” brochure, which addresses real-world experiences surrounding invisible symptoms and helps patients explain those experiences to others. Frey noted that some patients find it easier to share written resources with loved ones rather than trying to explain difficult symptoms themselves.

Support groups are another major resource available through the organization. In addition to groups for people living with MS, there are also groups specifically designed for caregivers, care partners, family members and friends. These spaces allow loved ones to better understand MS while also sharing their own experiences and stressors.

Frey said the overall goal is to help patients “live their best life” despite the challenges of MS. Through individualized support and education, she hopes patients feel less isolated and more empowered to seek the care and accommodations they need.

Patients and caregivers can contact the National Multiple Sclerosis Society MS Navigator helpline at 1-800-344-4867 or chat online with a navigator Monday through Friday from 7 a.m. to 5 p.m. MT through the National MS Society website. Additional educational resources and support can also be found on Facebook, Instagram and YouTube.