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Multiple Sclerosis Centers of Excellence


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Creating a Support Network

Janet Spencer, MSW, LCSW

Living with a chronic illness like MS can be stressful and challenging. Uncertainty and the constant need to adapt to change can have you feeling like you are on a roller coaster ride. Many people feel they no longer have control of their life. It’s common to feel you are alone, believing no one can possibly understand what you are going through. You are not alone. There are thousands of people living with MS that are struggling with many of the same issues you are. Many of these people have found that creating a supportive network of family and friends has helped them through difficult days as well as provided the day-to-day support they may need.

What is a support network?

A support network is made of family members and friends who are willing to support you. This is something you create yourself, for you. These are people that you can turn to in times of crisis as well as for simple things like talking about your day, going out to lunch, or getting a ride to a medical appointment. These people “get it,” they understand your needs and offer help when you need it.

How do I set up a support network?

Cultivating and maintaining a network of support can take effort and it’s important you establish a support network that works best for you. Some people find that a small support network of family and friends is sufficient, while others enjoy a large, diverse support network. Asking for or accepting help can be difficult. Try to remember that friends and family care about you and want to help. Allowing them to help gives them an opportunity to express their love for you.

MS affects everyone differently. It’s up to you to let family and friends know what you need. Be specific on what you would find most helpful; no one is a mind reader. Start by making a list of everyday chores and activities. From this list, check off those things you either still enjoy doing or those things you don’t feel comfortable asking others to do for you. Enlist a family member or trusted friend to ‘supervise’ the list and recruit members on your support team to volunteer for the remaining tasks. People will likely choose activities they enjoy or feel expertise in, assuring they’re a good fit for the task. Set realistic expectations for these tasks to avoid disappointment if things don’t go exactly the way you had hoped.

If you would like to expand your social network, get involved in activities where there are people with interests similar to yours or take some time to reconnect with old friends or colleagues. Volunteer with an organization that you find interesting or join a cause that is important to you. Many community centers have classes you can join as well as planned excursions that you can participate in. Having a variety of interests and activities in your life will open up opportunities to make new friends.

What is a support group?

Support groups bring together people facing similar issues, allowing attendees to share experiences and advice, as well as offer emotional and moral support. While not everyone needs support beyond their family and friends, support groups may lessen feelings of isolation as attendees make connections with people experiencing similar challenges. Attendees can also gain a sense of empowerment by better understanding their disease through the eyes of others.

Support groups come in a variety of formats including in-person, through the internet, or over the phone. Some groups are structured, moderated groups while others are more informal. If you are interested in a support group, plan to attend a few meetings to see if it’s a good fit. If you’re not comfortable with the group or don’t find it beneficial, try a different one. It’s important to find a group that works for you. Support group options may be available through your local VA facility; talk to your health care provider. If you need help finding a support group, nonprofits, service organizations, churches, and community centers may be able to help.

Taking the time to build a network of support or participate in a support group is an investment not only in your mental well-being, but also in your overall physical health. Spending time with people you consider friends contributes to a feeling of belonging, helps ward off loneliness, and increases feelings of self-worth. Remember that the goal of building a support network is to provide support for you and to reduce your stress. Prioritize your social commitments and watch for signs of stress and fatigue. Control your environment by choosing to surround yourself with positive people. This is not the time to keep company with people who are constantly critical or negative.

Keep in mind that relationships are give and take. Be willing to support those willing to support you. Make the effort to stay in touch with people and be a good listener when they need you. Show appreciation to your friends and family and don’t forget to say thank you for all they do.