When you're living with MS, a strong support network can make a huge difference. It can help you find answers, get encouragement, and make connections.
You can find support in many places.
Join a local MS support group. You may get advice, share stories, tap into other people's experiences, and find inspiration. Group members often lift each other up and help each other live their best life.
"When I was diagnosed in 2017, one of the first things I did was look for support groups," says Vickie Hadge, a 53-year-old in Tolland, CT. "I met some amazing people and started some great friendships. I've found that being with people who understand what I'm going through or have had similar experiences can be incredibly helpful."
To find a support group near you, try:
- National Multiple Sclerosis Society (nationalmssociety.org)
- Multiple Sclerosis Association of America (mymsaa.org)
- Multiple Sclerosis Foundation (msfocus.org)
You can also build your support network by going out and getting involved in the MS community.
"Engage in activities like a national or local walk/run or an exercise class to stay empowered and meet new friends," suggests Magdalena Cadet, MD, an assistant professor at NYU Langone Medical Center in New York City.
Think about joining advocacy efforts. Travel to your local, state, and federal governments to speak to your elected leaders about expanding support and getting more research funded.
Consider going to an annual meeting of the American Academy of Neurology. You'll learn about recent advances in MS and meet others with the condition, hear their stories, and make new connections.
Your computer can be a powerful source of support.
"I've found online communities that can be incredibly helpful, like blogs, Facebook groups, YouTube channels, and Instagram accounts," Hadge says.
Social media groups are good for connecting with others who'll support you and cheer you on. You can find answers to questions about living with MS on YouTube videos, blogs, and websites like those run by the MS organizations. Just make sure the sources you use are credible.
"Try some of the new self-care support apps on your phone," says Lisa Cohen, a quality-of-life coach for women with MS. You can also try mindfulness apps. Read self-help books on your phone or e-book reader. Listen to uplifting audiobooks.
Family and Friends
"Sometimes simply confiding in someone close to you, like a friend, family member, physical therapist, or physician, may be all the support you need," Cadet says.
Janet Perry, who lives in Mare Island, CA, and has been living with MS for 25 years, says support from her family and close friends, as well as her faith, has been essential to managing life with MS.
"The best way to enlist family and friends is to make sure they're educated about MS," says Mitzi Joi Williams, MD, a neurologist in Atlanta. Get them involved. Take them to a doctor's visit to ask questions. Take them to special program or volunteer events.
Your support network extends beyond friends and family. "I count my medical team as an integral part of my support team," Hadge says. "It includes my neurologist, general practitioner, naturopathic doctor, massage therapist, and therapist."
Help From Mental Health Professionals
"Good mental health is essential to overall health, especially when living with a chronic condition like MS," Williams says. A counselor or therapist can support you on a regular basis and when things feel especially tough.
Hadge schedules regular visits with her therapist. "It's always helpful to have a person outside of my day-to-day life to discuss how things are going. She offers good advice, and sometimes it feels good to just get my thoughts out of my head," she says.
"Nearly half of all people living with MS will experience depression at some point," Williams says. A licensed counselor or clinical psychologist can evaluate you for depression and anxiety.
A therapist can also advise you on ways to get perspective, and give you tools for talking with friends and family about MS and how they can help. Group and family therapy may also be helpful.
The Americans with Disabilities Act (ADA) may protect you at work.
To understand your rights, go online to the ADA National Network (adata.org) or the U.S. Department of Labor (dol.gov/general/topic/disability/ada).
Or try an MS center, foundation, or society. They may have brochures and website sections with more information. Some MS organizations have call centers with staff who can direct you to local resources, Williams says.
Cadet recommends reaching out to your employer's human resources department to review the ADA and your company's disability policy. You may need to talk to your doctor about documenting office visits and physical and emotional limits, she says.
You can also ask your doctor for more information.