The Art of Asking for What You Need

Posted on June 23, 2025 by Claudia Chavez

I’ve realized that learning to ask for what I need is an art form. While this may come naturally to some, others may find it difficult to put into words. Advocating for ourselves takes self-awareness, clarity, and practice — but the good news is that these skills can be learned and strengthened over time.

At our core, humans are wired for connection and belonging. Advocating for ourselves and asking for what we need can feel risky because it carries the fear of being rejected, dismissed, or seen as “too much,” “too needy,” or “difficult.” And yet, we all have an innate need to feel heard, validated, and understood.

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Reclaim Your Power

Posted on June 11, 2025 by Diana Cruz-Beniquez

Being diagnosed with a rare autoimmune disorder comes with many challenges- one of the most common and often more difficult is learning to become your own advocate. More often than not, the people and healthcare professionals I encounter are not familiar with my condition, which frequently means they do not know the symptoms that accompany the diagnosis and the treatment options that work best for me. This is when speaking up for myself becomes vital.

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The Power of Being Your Own Advocate

Posted on June 9, 2025 by MSAA

By Samuel Fitch

The word advocate means “a person who publicly supports or recommends a particular cause or policy.” But when it comes to self-advocacy, it means something even more personal—speaking up for yourself when no one else can.

As I sit down to write this, I find myself in a unique place. On one hand, I’m celebrating a beautiful milestone: my daughter graduated from ministry school this week. On the other hand, I feel completely worn out. We spent 24 of the 72 hours on the road just getting to and from her graduation, and the exhaustion has caught up with me. Add in the personal demands of life, a career that requires a lot of me, and countless other responsibilities, and it’s no wonder I’m feeling drained.

But here’s what I’ve learned: it’s OK to speak up for yourself. It’s OK to set boundaries with your time. It’s OK to give yourself permission to rest. That is self-advocacy.

And for those of us living with something like MS, self-advocacy isn’t just helpful—it’s essential. After a diagnosis, the floodgates open. Well-meaning friends and family start offering opinions, articles, and advice. But being your own advocate means having confidence in the path you’ve chosen with your medical team. Even in the early days, when things aren’t going smoothly or symptoms don’t seem to improve, you have to trust your team—and yourself.

Being a self-advocate means standing firm in the face of uncertainty. It means honoring your own voice even when your body feels weak. It means saying, “I’m not OK right now,” and knowing that’s a powerful, healthy thing to do.

As I look at the picture of my wife and our four kids on the wall, I’m reminded how blessed I am to have a support system. But even with that support, I’ve learned to listen to my body when it says, “Enough.” And in those moments, I have to speak up—not just for my health, but for my future.

Because sometimes, the strongest thing you can do… is rest.

About Sam:

Sam Fitch is a financial advisor based in Jamestown, New York, where he helps individuals and families build stronger financial futures through planning focused on cash flow, protection, and long-term goals. Before entering financial services, he spent 25 years working in his family’s restaurant business, which helped shape his strong connection to community and service.

Sam also lives with multiple sclerosis and is passionate about supporting others navigating similar challenges. Through his writing and advocacy work, he hopes to encourage people living with MS to pursue strength, resilience, and a meaningful life despite the obstacles the disease can bring. He is a husband, father of four, and active supporter of the MS community.

Spreading Awareness: Advocating for Client Needs

Posted on March 13, 2015 by MSAA

This week, in honor of MS Awareness Month, I spoke with a group of nursing students at Rutgers University in New Jersey regarding chronic illness and the role nurses play in patient advocacy and referral. This event highlights the importance of spreading awareness and educating those working directly with individuals affected by this disease.

While explaining the various factors associated with MS, we explored a variety of resources available to individuals. Nurses have a unique and valuable role in the medical team – they are often the first person a client sees in a medical team giving them the opportunity to hear and learn the ins and outs of an individual’s life. With this knowledge, nurses have the opportunity to discuss options and make referrals for clients.

It is vital that nurses view themselves as patient advocates and make referrals or speak to the medical team regarding any concerns they may have for the clients care. Some conversations are difficult to have with physicians; clients feel pressure during the short visit and do not get a chance to discuss their concerns. Often times, working closely with a nurse for some of the non-physician or non-medical related concerns can be helpful.

Hopefully the conversation with the nursing students set them up to become better patient advocates in their future roles as nurses!

Have you worked with a nurse for assistance with referrals to organizations or assistance programs? How was that experience for you?

Identifying Community Resources for Individuals with MS

Posted on August 8, 2014 by MSAA

Working on the MSAA Helpline, we receive a wide array of calls asking for assistance locally within the community. Whether it is for in-home services, help with transportation, or housing assistance, the Helpline specialists work with the client to find a local group that can be of assistance. While it is challenging to find an MS-specific organization in the area, there are some local organizations designed to assist those living with a disability to keep them living independently in their homes.

One of the more common programs Helpline Specialists refer to is the Centers for Independent Living. These non-profit centers are consumer-controlled and located right in the community or surrounding area. These centers are staffed by individuals with disabilities and provide a variety of independent living services.

Fifty-one percent of staff, as well as the Board of Directors, within the Centers for Independent Living are individuals with disabilities. These centers provide four core services: information & referral, independent living skills training, individual and systems advocacy, and peer counseling.

While not MS-specific, the Centers for Independent Living understand the challenges faced when living with a disability and can make suggestions or provide direct programming to improve the quality of life of those living within their regions.

Search for your local Center for Independent Living and reach out to learn about the opportunities and assistance that may be available to you and your family. It can be challenging to reach out for help and support, especially if you are not quite sure of the need you may have. Start by talking with one of the peer counselors or support persons; in talking with them, you both may be able to clearly define some of the needs you may be having.

Have you reached out to community resources in the past? In which ways were they helpful to you?

Multiple Sclerosis Around the World

Posted on August 6, 2014 by Angel Blair

Looking at MS around the world, the Multiple Sclerosis International Federation is an international organization offering support and advocacy for those with MS throughout different countries. Their initiatives include communicating information about MS to a global audience, especially where there is little MS support. They also work and coordinate with other MS organizations to advocate for research efforts and campaigns to help those living with MS, including World MS Day each year. They have several member organizations throughout different countries, and act as an international hub of MS information and support.

With MS affecting individuals throughout the world, it is imperative to have an international resource in place to turn to when information, support, and advocacy are needed. Through publications, newsletters, and weekly MS research updates, the MSIF offers those with MS increased awareness of the disease and its impacts. The group provides an opportunity for those countries without much MS awareness to receive additional support and resources.

As MS continues to be researched and investigated across the world in regards to its potential origin and treatments, the MSIF stands as a pioneering network to keep those in MS communities around the world apprise of new developments.

For more information about the MSIF, visit their website.

Self-Advocacy for People with Multiple Sclerosis

Posted on March 3, 2014 by Angel Blair

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

My MS Manager™: a mobile-phone application to track disease activity, store medical information, generate reports, and assist individuals with their treatment plan
MSAA’s S.E.A.R.C.H.™ Program: tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

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