How you can support someone recently diagnosed with multiple sclerosis

With nearly 1 million people in the United States living with multiple sclerosis (MS), you might know someone who has been recently diagnosed or is already living with the condition. MS is a chronic disease in which a person’s immune system attacks their central nervous system. The cause includes a combination of genetic and environmental factors including Epstein-Barr virus infection. No two people experience MS the same way — which also means there’s no one best way to support someone with the disease. Yet for people with MS, the strength of their social support network impacts their quality of life. So how can you be a good friend, family member or partner to someone with MS? We talked to expert providers who care for patients with MS to get some ideas.

1. Follow their lead. Like with any major diagnosis, someone who has recently learned they have MS needs time to process and perhaps even grieve. They might not be ready to talk — and that’s OK. Let them know you’re ready when they are. 

2. Educate yourself about MS. Focus on symptoms and what it’s like to live with MS. Some common symptoms of MS are fatigue, numbness, balance problems, weakness, visual impairment, bladder issues and pain — and some people may not have or display signs of the disease. If you’d like to understand what it can be like to live with MS, read some of our patient stories. Another resource: Barry Singer, MD, a BJC Medical Group neurologist and director of The MS Center for Innovations in Care at Missouri Baptist Medical Center, curates a comprehensive MS education website called MS Living Well and hosts the MS Living Well podcast in which he interviews global experts about MS treatments, innovations and tips for living with MS.

3. Reinforce the fact that MS symptoms aren’t universal. Encourage your loved one not to compare themselves to others with MS, and remind them that there have been substantial strides in MS research over the past few decades. Highly effective therapies are changing the trajectory of the disease, helping reduce relapses and reducing the risk of worsening disability. To help inspire your loved one, point them to organizations such as Can Do MS and MS Bright Spots of Hope, which can show them how life can still be rich and meaningful with MS.

4. Recognize that even common symptoms of MS change daily. Symptoms such as physical and cognitive fatigue and bladder issues might cause people to cancel activities last minute either due to tiredness or anxiety over leaving home. Your friend or loved one is not being lazy, and this last-minute cancellation doesn’t reflect how they value your relationship. Remember that the fatigue is real, and suggest backup activities at home rather than going out. Or encourage your loved one to “budget” their energy, saving it for the moments that really matter to them. For example, if they have plans for a certain evening, suggest limiting tasks in the morning and taking a nap in the afternoon so they have energy for plans. Make sure you offer help around the house so they can truly rest.  

5. Deal in specifics. The best way to understand how you can support someone is to ask what they need. But if your friend or loved one is having a hard time pinning down exactly what that is, give them some examples. Offer to come by for three hours one Sunday morning to help with meal prep or to take their children on a fun outing and give them some time to spend one-on-one with their partner or simply rest. 

6. Consider the weather. Vitamin D can help with MS, and movement has benefits, too — even the shortest walk outside can help. That said, with warmer temperatures approaching, remember that heat can sap a person’s energy and increase fatigue, vision problems and weakness. Wearing a cooling device while out and remembering to stay hydrated can offer relief.

7. Tap into technology. Ask digital voice assistants to help your loved one make lists or set reminders if they’re forgetting things. Having a list of contacts or passwords written out and at hand can help them avoid frustration. Save planning things that require a lot of attention and focus for early in the day. 

8. Support your loved one mentally and emotionally. A portion of people who live with MS will eventually develop depression. Encourage your friend or loved one to talk to their doctor if they’re feeling down and think they could benefit from medication, and be there for them, whether it’s to talk or simply listen. Support groups and forums such as those from the National Multiple Sclerosis Society and Multiple Sclerosis Association of America, as well as counseling, can help.

9. Remember that caregivers need care, too. Caregivers provide invaluable support to their loved ones and are often viewed as the backbone of long-term care. Caregivers need to take care of themselves so they can be there for their loved one with MS. Finding a community of caregivers can help you navigate a challenge and support you in your new role. BJC HealthCare is part of this network. Join us with the National Multiple Sclerosis Society at Walk MS. Walk MS St. Charles County will take place on April 27, Walk MS Fairview Heights on May 11 and Walk MS St. Louis on May 18. Bike MS will take place September 7 and 8 in Godfrey, Illinois.

BJC HealthCare is committed to providing extraordinary care to patients with multiple sclerosis at three locations: Missouri Baptist Medical Center, Barnes-Jewish Hospital and St. Louis Children’s Hospital. Learn more about BJC HealthCare and MS care.