World MS Day: How to Advocate for Yourself When Living with Multiple Sclerosis

Living with multiple sclerosis (MS) isn’t easy, but learning to advocate for yourself can be one of the most powerful tools you have.

On World MS Day, we celebrate your strength, resilience, and courage by offering real-world strategies to help you speak up for your needs, whether with your doctor, employer, family, or friends.

Behind the Numbers: The Human Side of MS in the U.S.

Close to 1 million people in the United States are living with MS today, with new diagnoses happening every week. Around 85% are initially diagnosed with relapsing-remitting MS, but let’s be clear: you are not a number.

You’re a parent showing up for your kids on hard days. A dreamer still chasing goals. A professional pushing through the brain fog and fatigue. You’re navigating an unpredictable condition with grit, grace, and determination.

So, if you’re living with MS, we hope you know this: you matter. Your story matters. How you move through life, whether you’re making significant strides or just getting through the day, makes a difference.

Why Self-Advocacy Matters

Advocating for yourself means recognizing your needs and speaking up for them confidently. It’s not always easy, but it’s how you make sure your voice is heard and your choices are respected.

Whether managing treatments, asking for accommodations, or helping others understand what you’re going through, self-advocacy puts you back in the driver’s seat.

Consider the following strategies to help you advocate for your needs more confidently:

Talking to Your Healthcare Providers

Your relationship with your medical team is key. Here are some ways to feel more empowered during appointments:

• Come prepared: Jot down your symptoms, concerns, and questions beforehand so you can address them during your appointment.
• Be clear about your goals: Let your provider know what you hope to achieve, whether it’s fewer flares, more energy, or better mobility, and work with them to set realistic goals.
• Be honest: Even if a symptom feels small, it matters.
• Ask for clarity: Never hesitate to say, “Can you explain that in simpler terms?”

If something doesn’t sit right or you’re not feeling heard, seeking a second opinion is okay. You deserve care that feels right for you.

Navigating Biologic Therapies

Biologic therapies have changed the game for many people with MS. They can slow progression, reduce flares, and improve quality of life, but deciding on the right one takes teamwork between you and your doctor.

Here’s how to stay informed and empowered:

• Do your research: Make sure you understand your treatment options’ potential benefits and side effects before deciding.
• Consider your lifestyle: Some treatments require regular infusions or injections. Talk through what feels manageable.
• Track your progress: Keep notes on how your symptoms progress so you and your doctor can adjust as needed.

Being involved in decision-making helps ensure your treatment fits your life, not vice versa.

Requesting Accommodations at Work

MS can affect your work life, but it doesn’t mean you must push through alone. The Americans with Disabilities Act (ADA) protects your rights as an employee with a chronic condition.

• Know your rights: You are legally entitled to reasonable accommodation.
• Have the conversation: Let your employer know what you need and why.
• Be specific: Whether it’s flexible hours, remote work, or ergonomic equipment, clear requests help create supportive solutions.
• Keep records: Document what you discussed and any agreements made.

You don’t have to feel guilty for needing accommodations. You’re not asking for special treatment, you’re setting yourself up for success.

Finding Your Community

Advocating for yourself doesn’t mean going it alone. Finding others who “get it” can make all the difference.

• Join support groups: The National MS Society offers online and in-person groups. These are safe spaces for you to vent, share, and learn.
• Engage online: Vibrant MS communities on social media platforms will welcome your input.
• Show up: Events, fundraisers, and awareness days like World MS Day help you feel connected and remind you that you’re part of something bigger.

You’re Not Alone

Self-advocacy is a journey, and it won’t always feel easy. But you’re doing something powerful whenever you speak up, ask a question, or step toward something supporting your well-being.

So today, on World MS Day, we want to remind you: your voice matters. Your experiences matter. Your courage inspires others, and your actions pave the way for a more inclusive and understanding world for everyone living with MS.