Secondary progressive MS: building your support network

Secondary-progressive MS (SPMS) is a type of multiple sclerosis that affects people who have previously been diagnosed with relapsing-remitting multiple sclerosis (RRMS). SPMS is characterized by worsening symptoms and disability, and people often require additional support as they navigate this phase of the disease.

What is a support system?

A support system is a network of people who are able to provide help and assistance to you and your family. Everyone has slightly different needs when living with SPMS, so everyone's support system will be a little bit different.

Some of the people who can be a part of a support system include:

• Your healthcare team
• Friends and loved ones
• Social workers specializing in chronic illness
• Counselors and mental health professionals
• Support groups

Your healthcare team

Good communication with your healthcare team is essential to getting the best care possible. Your healthcare team needs to know:

• Questions you have about your diagnosis
• Your concerns about diagnosis and treatment
• The challenges you and your family are facing
• How you are feeling overall, both physically and mentally

It also helps to think of yourself as part of your healthcare team. The changes that occur as MS progresses can be gradual and may not always be obvious. This is sometimes called “silent progression.” Your healthcare team relies on you and your loved one to report any changes you notice in how you feel, what your days are like, and anything that is difficult or challenging.

Friends and loved ones

Family, friends, and loved ones are a valuable source of support for people managing MS and caregivers. This is sometimes referred to as "social support."

Spend some time thinking about the types of support you need, what you might need in the future, and who you can reach out to. This can be practical things, like help with meals, pet care, or transportation. It can also be emotional support, like having a friend to call when you need to smile.

Also spend time thinking about the types of support that you do not need. People may reach out with ideas for help, but those ideas may not always align with what you want and what you need.

Counselors or mental health professionals

Even if you have never felt you needed to before, consider working with a counselor, a healthcare provider who specializes in mental health, or a spiritual or religious advisor. Counseling can help you learn different strategies for coping with stress, making decisions, and identifying what you do and don’t need. Counseling can also benefit caregivers, family members, and loved ones.

Social workers

This overlaps with counseling, because counseling is one of the many areas that social workers can help with. A healthcare social worker can also help with navigating the healthcare system, understanding your diagnosis and treatment options, finding ways to reduce the cost of care, and connecting you with resources and support.

Support groups

Consider participating in a support group for people who are living with MS and/or SPMS. This can be a group that connects online or one that meets in person. Support groups offer the opportunity to meet others who know what the experience can be like. It’s an opportunity to share your experiences, exchange what you've learned, and also provide support to others.

Ask a healthcare team or social worker if they can recommend a support group. You can also check with organizations such as the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America.