Self-Advocacy: Challenges, Tips, Mentors and Allies

By Stacie Prada

Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance.  Frustration grows when we meet opposition and live with pain and unmet needs.

Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.

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El arte de pedir lo que necesita

Me he dado cuenta de que aprender a pedir lo que necesito es todo un arte. Mientras que para algunas personas es algo que resulta natural, a otros les resulta difícil expresarlo con palabras. Abogar por nosotros mismos requiere autoconciencia, claridad y práctica, y afortunadamente estas habilidades se pueden aprender y fortalecer con el tiempo.

Por naturaleza, los seres humanos buscamos la conexión humana y el sentido de comunidad. Abogar por nosotros mismos y pedir lo que necesitamos puede parecer riesgoso porque conlleva el miedo de ser rechazados, descartados o vistos como demasiado demandantes o difíciles. Sin embargo, todos tenemos una necesidad innata de sentirnos escuchados, validados y comprendidos.

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The Art of Asking for What You Need

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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Power of Empowerment

There are a lot of uncertainties one must face while battling MS, and its symptoms vary widely among individuals. For newly diagnosed individuals, this can be a scary and unsettling journey without knowing what to expect down the road. Below are a few things you can suggest to someone who has been recently diagnosed with MS:

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When It Comes Time to Pay the MS Tax

We all know the feeling. That surge of energy, the desire to participate, to feel “normal” for a while. Whether it’s attending a family gathering, tackling a long-awaited household project, or simply enjoying a few hours out with friends, those with multiple sclerosis (MS) often seize these moments with both hands. 

But as many in our community understand all too well, this activity often comes with a significant price: the dreaded “MS tax.” 

Here is what our community members had to say about how they deal with physical and mental exhaustion after overexerting themselves.

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Strawberry Basil Bruschetta

Celebrate the sweetness of the season with this Strawberry Basil Bruschetta—a bright, flavorful dish that turns simple ingredients into something special. Perfect for July 4th gatherings, casual picnics, or anytime you want a light bite with a summery twist, this recipe pairs juicy seasonal strawberries with fresh basil and a hint of balsamic. It’s easy to prepare, budget-friendly, and elegant enough to impress, whether served as an appetizer, snack, or refreshing dessert.

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Reclaim Your Power

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 

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. 

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Knowledge is Power, and so is Self-Advocacy

Living with multiple sclerosis often means navigating a complex healthcare system, where self-advocacy becomes essential. Recently, I experienced firsthand how crucial it is to stand up for yourself in medical settings.

About 6 months ago, I made the decision to switch to a new neurologist, mostly due to the cost of my annual MRIs. I did my research and found an MS specialist 1.5 hours away and decided to give him a try. I arrived at the office, was pre-screened, and all seemed well until the doctor came in and I found myself being questioned and patronized in a way I have never experienced in a medical setting (or any setting really). Despite living with MS since 2016, doing well on the same DMT for 6 years, and working for MSAA for the past 3 years, the doctor asked me to justify my treatment and explain its benefits in detail before he was willing to continuing the conversation. I never received a physical examination, he never once asked about my lifestyle, and the entire interaction felt like a test. I guess I passed because he did end up ordering my next MRI and continuing with the same treatment path I was already on. The experience left me feeling unheard and disrespected.

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Vanessa Willison – MSAA’s June 2025 Artist of the Month

MSAA features the work of many talented artists affected by multiple sclerosis as part of our annual MSAA Art Showcase. Each month we share these artists’ inspiring stories and beautiful artwork with you as our Artist of the Month. This month, we celebrate Vanessa Willison as June’s Artist of the Month. Vanessa is from Dorchester, NE.

“Untitled”

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