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.
Continue readingBy 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.
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”
Continue readingBy Stacie Prada
If I could talk to my younger self, I know she’d be surprised, excited, proud, and likely a bit skeptical to learn that I’ve genuinely found fulfillment in imperfection.
I was a very timid and quiet child. I feared making mistakes, looking dumb, and not doing things right. I tried to avoid any possibility that I’d do something to be ridiculed or judged negatively.
I visibly shook throughout a presentation on candle-making to my fourth-grade class. It was torture to be the center of attention in a classroom. A high school presentation of a memorized poem wasn’t much better. Neither my nine-year-old self nor my 15-year-old self would ever have imagined that someday I would frequently present with confidence to large groups. Young me would be amazed that I overcame my fear of public speaking. People who have only known me for the last 10 years would not believe I was ever that shy and fearful.
Continue readingBy Bonnie Lynn Ellison
May is a good time to reflect on myself, and what my younger self would be proud of. When I was young, I thought life was a rodeo! I competed in the National Little Britches Rodeo from 8 to 18 years old, and was proud of my ribbons, buckles, and trophies! I learned, if you got thrown off, you got back on the horse!
When I was young, I also played my guitar and sang in talent shows, from 7th grade through high school. In college, I performed with the FAB Company. We toured nationally in the early 1970’s, recorded four albums, and were contracted with the major international talent agency, William Morris. I’m proud that we wrote our own original music, songs, and comedy. We did concerts! I thought I was Taylor Swift!
I fell in love, got married, and two years later, I was diagnosed with multiple sclerosis. I was 25. It affected me like a stroke, on the right side of my body. I had never heard of this disease, so it was like an old rodeo injury to me. It took about three years to recover enough to write, sing, and perform again. And there were no assurances that it wouldn’t return. I had always been athletic and healthy. It was shocking for me, and a struggle.
Continue readingBy Nana Opong-Owusu
They say the habits, values, and choices we’ve planted in our past, shape the garden we stand in today — the decisions we’ve made, the habits we’ve formed, the passions we’ve nurtured, and the values we’ve carried quietly in our hearts. I didn’t appreciate these types of thoughts as a child, but as an adult I oftentimes find myself reflecting.
Growing up, I was always drawn to movement. Sports weren’t just a hobby — they were a way of life. Whether it was the freedom associated with biking around the city with my childhood friends, the camaraderie of my basketball teams, or the adrenaline of soccer tournaments, exercise and movement have always grounded me. Now as an adult, I see it gave me structure, perseverance, and most importantly, a familiarity with pushing through adversity. But alongside that physical drive, I’ve always carried something else: a caring heart. A giving heart.
Continue readingBy Samuel Fitch
This is my first blog post—so I’m hoping readers will extend a little grace. I’m 44 years old at the time of writing, and lately I’ve been reflecting on the last two decades of my life. One question keeps coming to mind: Would my 24-year-old self be proud of the man I’ve become and the career I’ve chosen?
At 24, I was newly married—Jessica and I had tied the knot in 2003. We were less than a year into marriage, expecting our first child, and I was working full-time at my family’s restaurant. We hadn’t bought our first home yet, but I was riding high on love, youth, and big dreams. At the same time, I was still dealing with some self-destructive habits—drinking, gambling—trying to figure out who I wanted to be as an adult.
Fast forward twenty years, and life has taken some sharp, unexpected turns. Jessica and I have grown stronger together. We’re now parents to four incredible children—three daughters and our youngest, a son. But that early vision I had for my career didn’t quite pan out the way I imagined.
Continue readingMSAA 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 Eileen Dillon as May’s Artist of the Month. Eileen is from Castle Rock, CO
“Our First Date”
Continue readingFeaturing Barry A. Hendin, MD
MSAA’s Chief Medical Officer
Question: For people with multiple sclerosis, what can be the causes of dizziness and vertigo?
Answer: Dizziness and vertigo are common in the general population and even more common in people with MS. More than half of people with MS will experience dizziness or vertigo at some point.
Continue readingBy Stacie Prada
Without changes in routines or seasonal differences, it’s easy to lose track of time, day of the week, month, and even time of year. It’s good to have consistent healthy habits, but variety in schedule, activities, and environment helps us mark time.
Consider driving a long stretch of highway. They have names for the experience of driving a distance, losing track of time, and being surprised not to remember it: highway hypnosis and white line fever.
The more monotonous an experience, the less alert we’ll be, and we become more apt to operate on autopilot. It’s a small leap to compare this to our lives and how we experience time passing. The less we notice and the more we operate on autopilot, the more time can fly by.
Continue reading