Director, Montefiore Multiple Sclerosis Center, Montefiore Health System
With the COVID era changing social environments and interactions, making sure patients can maintain social connections is as important as ever.
The COVID-19 pandemic has shifted social environment and interactions. We know from experience and peer-reviewed papers that loss of social contact has greatly affected people with multiple sclerosis (MS) around the world.1 Stay-at-home orders have limited critical social networks like support group meetings, family gatherings, and exercise programs—which has led to worsened depression ratings and mobility scores for patients with MS.1-3 Social media can help fill the gaps.
Social media use often spikes during environmental and political crises when traditional lines of communication breakdown. In 2020, social media also brought awareness to mental health issues while telehealth expanded psychotherapy access through remote options.4,5 Although social media has been linked to worse mental health outcomes related to increased disaster news exposure,6 utilizing social media for social connection has improved outcomes for patients with multiple sclerosis.7,8
I encourage my patients to use social media as an extension of their medical treatment plans. Many patients share their experiences with symptoms, treatments, and daily life on various platforms such as YouTube, TikTok, Instagram, and personal blogs. Exchanging stories builds community and enhances awareness of the many faces and phenotypes of MS—helping everyone understand the ethnic, gender, and socioeconomic diversity of the disease.
Clinicians can also benefit from following MS accounts on social media platforms. Our 30-minute office visits with patients only scratch the surface of the daily challenges and victories that patients face. The anonymity of chronic illness support circles fosters discussions that people may not feel comfortable having in person. This should remind us to ask directly about uncomfortable subjects like bowel and bladder control, sexual function, and hygiene, which are important measures for quality of life. Patients on social media also share positive parts of their lives that we may forget to address like travel tips, adaptive exercises, the challenges and joys of raising children, and even everyday challenges like the best way to commute or deciding when to share your MS diagnosis.
While I caution that one can find plenty of incorrect and even inflammatory information on the web, the Internet is a readily accessible resource, particularly in the COVID era with limited direct social contact. More validated information is available, too, in our new remote world. Patients and providers can access virtual support groups and seminars through MS organizations like the National MS Society and Neurology Academy.9
There are also useful online resources geared toward exercise, mindfulness, and meditation. At the height of the pandemic, when gyms and physical therapy centers were closed, I recommended free or reduced-cost online guides, to help prevent loss of motor function, decrease pain and spasticity, and improve mental health. Just a few examples are The MS Gym, MS Workouts and MS Trust – Exercise Headspace, and Down Dog Meditation. I always remind patients to avoid painful movements and to work out in safe environments, away from rug edges and sharp objects.
While social media has its caveats, during the COVID-19 pandemic it has fostered community, improved mental health, and helped maintain physical activity for patients with MS. As the pandemic continues and our social interactions remain largely remote, identifying healthy ways for our patients and ourselves to engage with social media is vital.
Lauren Gluck, MD, is the director of the Montefiore Multiple Sclerosis Center at Montefiore Health System.