Learning to Advocate for Yourself with MS: A Guide

When you speak up or act on behalf of your rights and well-being, you’re self-advocating. If you have multiple sclerosis (MS), self-advocacy enables you to have more control over how your condition affects your life.

Self-advocacy is important in all aspects of your life. Your family, friends, healthcare team, and co-workers all need to know how they can support you and help you minimize the impact of your MS. Don’t be afraid to speak up when you need to.

Your family is an important support network in your MS journey. Be clear about the support you need, but also about the ways in which you’re still independent and capable. If your MS symptoms are creating new limitations, adjust your household roles accordingly. For example, you may no longer be able to carry a basketful of laundry up the stairs, but you could take over someone else’s job of folding.

Remind family members about the invisible cognitive problems that can develop with MS. This may include problems with high-level brain functions such as memory, focus, language, or problem-solving. The next time you’re forgetful or unable to focus, your family won’t misinterpret it as a lack of caring. When you’re tired, tell them — don’t assume they already know. Make sure that you communicate clearly and regularly.

Recognize and respect that each person in your household has their own coping mechanism when faced with a challenging situation. Some might prefer to immerse themselves in learning about your condition while others would rather be distracted from thinking about it. Tailor your self-advocacy communication to the comfort level of each family member.

Read more