Life with MS

Alone with MS: The Symptom People Don't Talk About

By Erika Bolin

It’s hard enough to hear the words, “You have multiple sclerosis.” For so many the next thought is, “Who can I turn to for support? Who is going to be there for me?”

People often assume that a person diagnosed with a chronic disease will be cared for by a loving family that will help the MS patient throughout the process. But life can be more complicated than that.

You may be one of thousands that have no spouse and no immediate family or close friends to rely on during the “bad days” with your MS.

Perhaps you do have a loving family or close friends, yet you may have discovered that because many of the symptoms of MS are invisible, the empathy and support you thought you would have is nowhere to be found. The family and friends you counted on are facing denial, fear, or misunderstanding of the disease. They make casual remarks like, “But you look so good.” Or worse, you discover they simply have no empathy, no ability to relate to the fears and challenges you face. 

Or you may belong to a dysfunctional family. It is doubtful that your diagnosis will change those long-forged dynamics. The sad truth is that your diagnosis is unlikely to repair the torn threads of a frayed family, and may add additional strain.

The lack of a support network often makes your situation seem even worse. With all these stressful truths, there is another, kinder truth: there are resources out there to build a new style of family and support system.

Creating your support system

To create a reliable support system for yourself, look to modern technology, support groups, and social gatherings and begin to piece together a circle of caring people you can count on during the bad days.

Lara M. Stepleman, Ph.D., psychologist and director of Psychological Services at the Augusta MS Center offers this advice: “If someone with MS recognizes that they do need additional support, it may be helpful to first take an inventory of the supports that he or she has. This includes people the individual can count on for a good cry or laugh, a ride to the doctor, assistance with housework, and so on. 

“Support people include professionals (healthcare providers), employees and volunteers of MS and other support organizations, friends, family members, coworkers/employers, and leaders and members of our religious and/or social organizations. Even people like a hairdresser, mailperson, or neighbors could be part of the process in their own unique way. People will differ in terms of how much or which types of support they might provide.”

Relax a moment and think of what you want or need to raise your quality of life. Then decide to find it. If possible, venture out and participate in life; meet new people to create a support system. Look into attending a local MS support group; you may find one through your neurologist’s office or through online resources, such as the MSFocus’ National Support Group Directory.

Dr. Stepleman said, “Support groups not only provide information about MS, but also companionship and empathy from individuals who are also living with MS. Support group members themselves have many terrific recommendations about resources for further support.”

If you cannot find (or get out to) a support group in your area, join one online. Facebook has several MS-related support pages. These can be tremendous in offering you emotional companionship. Also, most national MS organizations have web-based support resources, discussion pages, and newsletters you can receive. All of these online MS-related resources are populated with people who are acutely aware of the emotional, physical, and social/relationship situations with which you are trying to cope. Find one that you relate to. 

Getting by giving and growing

Look into volunteering. Is there something you are good at that you can share with others? You can sit and mentor, or help from your couch and computer at home. Nothing feels better than helping others – even when you need help in other areas. And you may see that while you have MS, someone else has another issue they are dealing with –  they, too, do what they can; they too are alone. Together you can find social connections to build upon, and often eventually count on as deeply as any traditional “family” system.

Branch out by joining non-MS-related social organizations in your area (a book club, a knitting circle, a community gardening organization, a vegetarian cooking group, a lunch bunch, etc.) through trusted social groups like you find on Or contact a local church of your religion, or a Unitarian Congregation which welcomes all denominations.

Tap into Local and National Resources

There are also peer-to-peer support phone calls available through MSFocus: the Multiple Sclerosis Foundation and other national organizations, if you need an ear or guidance. 

Remember, too, most communities offer an eldercare system. This is a resource that has information on many assistance programs (such as United Way and Golden Harvest) that may work in bringing you meals, companionship, home healthcare, and more. And, if you are not an older person, the contacts and resources these counselors have may still fit your support system needs.

If mobility is keeping you from reaching out, research assistance device grants (if needed) and look into your community’s disabled-friendly shuttle bus to help keep you interactive with the world around you. 

Dr. Stepleman adds, “Many stress-reducing activities require little movement, including relaxation breathing, meditation, and adaptive exercise (under the guidance of a healthcare provider). Healthy coping also involves doing things that bring us pleasure (watching a funny movie, listening to music, crafting), interacting with others (a phone call, a coffee date), and staying meaningfully involved. Sometimes people will need to re-evaluate what they have used to cope in the past and add new activities, which often add richness to their lives. Being willing to have new experiences can create paths we might never have considered otherwise.”

Ask for Help

If one continues to have difficulty coping, professionals, social workers, and psychologists can also provide assistance and guidance. Ask your neurologist for a referral to see a psychologist. If insurance is an issue, ask about a sliding-scale payment plan.

Even if you are physically alone, thanks in part to technology and all of the incredible resources available through MS-related blogs and social media, plus great resources from support groups, MSFocus: the Multiple Sclerosis Foundation, and other MS organizations, you can quite literally build a support system from scratch, one that fits your needs. It may not always be easy, but it is achievable.

Your journey must now be All About MEE – Motivating, Educating, and Empowering.

For some of the Multiple Sclerosis Foundation’s Support Programs visit:

A few online sources to start:

Erika Bolin is retired comedic celebrity journalist.–nom de plume, Emily Blunt. She has also hosted some of Movieland’s biggest red carpet events. Many of her works can be found at her online venue Erika’s own MS has slowed her down, but she still uses her web-based writings to keep her brain active and make people laugh, with less time-sensitive DVD reviews. She is also the editor for MSF’s Movers & Shakers Advocacy Newsletter. Erika lives independently of family and has had to reach out for support from friends and resources.

(Last reviewed 5/2012)