multiple sclerosis social support
Diverse group of friends cleanup a park during a charity event. They are standing with their arms around one another.

Due to the complex and unpredictable nature of multiple sclerosis (MS), health care providers should address the psychological and emotional needs of their patients with MS, according to a study published in the Journal of Neurology.

The emotional issues that patients with MS experience are often overlooked, according to a survey of over 3000 MS patients done by the MS Trust, an English organization. The findings revealed that over half of people with MS have emotional needs that aren’t being met, while nearly 80% of patients said they weren’t offered psychological support upon diagnosis.

In many cases, depression goes undiagnosed in MS patients simply because health care providers do not ask about their patients’ mental health. In fact, clinical depression is more common in MS patients than it is in the general population, according to the National Multiple Sclerosis Society.

Armed with this knowledge, health care providers have the opportunity to offer ideas and tools to their patients. One way clinicians can address patients’ mental health needs? Encourage social support.

Lack of education and stigma around MS leads to patients feeling separate from others and misunderstood, according to a recent Penn State University study. Thus, MS patients can benefit from something as simple as human connection. The potential benefits are many.

According to a study published in the Journal of Neurology in May 2021, patients who are able to access ongoing social support — via support groups or even having a trusted confidant to talk to — not only experienced better mental health and an improvement in their depression and quality of life, but decreased fatigue and subjectively improved cognitive function.

The research was conducted by pulling together data from 2 independent research cohorts, including the Reserve Against Disability in Early MS (RADIEMS), which looked at people aged 20-50 years (66.5% percent women) with relapsing-remitting MS (RRMS), as well as the MEM CONNECT cohort, which involved people aged 18-65 (80.1% women and 19.9% men) with RRMS.

Beyond improvements in fatigue and quality of life in both groups, the study found that the RADIEMS cohort also saw an increase in motor function, particularly around grip strength and gait endurance in women, when they had social support. All of the findings related to patients at different stages of disease. 

As the authors of the study pointed out, similar results have been found in patients with systemic lupus erythematosus and rheumatoid arthritis.

More so, the study also explored the possible relationship between inflammation — a key characteristic of MS — and social connection. The study found that the body senses lack of support and loneliness as a threat, which revs up the sympathetic nervous system and the hypothalamic–pituitary–adrenal axis, leading to further inflammation.

According to the authors of the study, “The relationship between social support, mental health, and quality of life thus opens up potential new treatment options for MS clinicians, as social support may represent a yet under-recognized risk factor and tractable intervention target. For instance, support groups are shown to effectively reduce depression in a variety of clinical populations.”

The need for social support reaches beyond just MS patients, however. A study published in the Journal of Neuroscience Nursing in 2020 found that perceived social support is important to both MS patients and their caregivers. having someone to listen to and validate their experiences, worries, and feelings can drastically improve physical, social, and mental health, researchers found

HCPs Can Better Support MS Patients 

According to findings of the MS Trust survey, as well as recommendations in the study in the Journal of Neurology, health care providers can better support their patients with MS by:

  • Asking about their current support systems; open up an honest conversation around their needs. 
  • Inviting patients to bring their caregivers to appointments; speak with patient caregivers about their needs as well.  
  • Encouraging patients and caregivers to establish beneficial, nonjudgmental social support systems. Explain that talking to someone openly and honestly about their experience with MS can lead to improvements in their health and quality of life, while speaking to other MS patients facilitates validation, better understanding of the disease, and improvements in coping strategies.
  • Providing patients with helpful resources aimed at easing their psychological and emotional burden. These may include referrals to psychologists or psychiatrists, community-based apps, online forums, or local support groups. Some resources include MSFriends Hotline (1-866-MSFRIEND), The National MS Society’s MS Navigator, and MyMSTeam, a social networking app for MS patients and their families.


MS can be devastating to the individual who lives with it as well as their families. Health care providers can potentially prevent distress and worsening disease activity by having open conversations around patients’ social support systems.


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References

  1. MS Symptoms. National Multiple Sclerosis Society. Accessed May 21, 2021.
  2. Kever A, Buyukturkoglu K, Riley C, De Jager P, Leavitt V. Social support is linked to mental health, quality of life, and motor function in multiple sclerosis. J Neurol. 2021;268(5):1-10. doi:10.1007/s00415-020-10330-7 
  3. Dębska G, Milaniak I, Skorupska-Król A. The quality of life as a predictor of social support for multiple sclerosis patients and caregivers. J Neurosci Nurs. 2020;52(3):106-111. doi:10.1097/JNN.0000000000000503 
  4. Cadden MH, Arnett PA, Cook JE, Cadden MH. The contribution of stigma on depression symptoms and depression status among individuals living with multiple sclerosis. Paper presented at: Annual Meeting of the Consortium of Multiple Sclerosis Centers; May 24-27; New Orleans, LA. Accessed May 21, 2021.
  5. People with MS aren’t getting enough mental health support, survey shows. MS Trust. April 14, 2020. Accessed May 21, 2021.