How Is the Patient Perspective Creating Positive Change?

I've seen a lot since I became an official member of the disability community thirty years ago. Societal attitudes toward disabilities have changed in more ways than I ever imagined and I'm so grateful for it.
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I've seen a lot since I became an official member of the disability community thirty years ago. Societal attitudes toward disabilities have changed in more ways than I ever imagined and I'm so grateful for it. The shift from hushed voices talking about illness to inviting patients to share personal stories makes me feel like I've crawled out of a dark, scary hole and landed in a place where I can feel the sun again.


The busy, productive and enlightening few weeks I just had helped me feel this way. If you asked me what I've been working on I'd have to say the main focus has been about Multiple Sclerosis. But if I said it was only about MS it would be like saying Cary Grant had a pleasant face. It doesn't complete the picture.

Indomitability. Character. Compassion. Intelligence. Curiosity. Commitment. Love. Friendship.

It began with a road trip to Philadelphia where I was invited to be on an MS patient panel along with 3 other advocates. It was an incredible opportunity to express our opinions on what it's like living with MS.

Folks asking US to speak OUR truths? It's surreal yet amazing.

Sitting at our roundtable were key players from a public relations firm, a pharmaceutical company and a well-respected health and wellness website. They wanted to hear our personal stories, opinions and what we've heard from other MS patients across social media channels.

We were open and honest, holding nothing back, particularly while discussing a recent television ad by a pharmaceutical company that did not portray someone living with MS in an accurate manner.

The patient perspective is alive and well these days. Our voices have become a hot commodity for big business and the medical community, and we are ready to be heard.

Damn, it feels so good.


Passion. Intelligence. Creativity. Integrity. Brilliance. Family.

That same week I attended a meeting at the office of the Consortium of Multiple Sclerosis Centers (CMSC), a place where I'm part of an incredible family. As their blogger we had more planning to do prior to CMSC's upcoming 30th anniversary meeting being held at the Gaylord National Resort and Hotel in National Harbor, Maryland. The event brings together over 2,000 MS leaders from around the world to discuss what's new and on the horizon for the MS patient.


The meeting welcomes healthcare professionals, researchers and advocates to not only celebrate 30 years of achievements but to also learn more about new and emerging therapies. It's a chance to hear new information that positively impacts both the clinical practice and research. There's also opportunities to attend over 130 hours of educational sessions for the multidisciplinary audience. (To find out more about the annual meeting and what's being offered please click here.)


Please allow me to perform a little vaguebooking, something I usually despise but for now it's all I can offer. I've also been working on a project proposal that, if granted, will have far-reaching benefits for the MS community. So please do me a favor and cross your fingers and toes. I'm praying for some smooth sailing.

Resolve. Courage. Character. Willpower. Spirit. Spunk. Determination.


My husband and I recently visited the fascinating Museum of the City of New York. If you're in Manhattan and have a chance to visit I highly recommend it. A history and art museum that opened in 1923, one exhibit in particular stood out to me that day.

No narrative is necessary to accompany the following photos. It's self-explanatory. That said I would like to say that every physically challenged person featured in these photos are champions. They are true heroes.

Here's a look at the photos I took from the exhibit "The New York Marathon: The Great Race":








Those of us who are physically or mentally challenged continue to dream of living a "normal" life, where a cure will be found, better medicines will be discovered, and tolerance and compassion will be in abundance. We dream and wait and pray. And hope.

For now I'll continue to use my voice to help create positive change for my community. For now I'll bask in the glow of seeing others in the disability community thrive in ways none of us ever dared to dream of.

Let's all keep moving forward.

This post was previously published on Cathy's blog, An Empowered Spirit.

Cathy Chester is an award-winning writer and health advocate who has lived with Multiple Sclerosis for 30 years. She writes about finding the joy in life despite disability. MS does not define her, so Cathy also writes about living a quality life in midlife, social good causes, animal rights, book and movie reviews, and the importance of using compassion and kindness as a way of making the world a better place. Her work has been published on numerous websites as she is passionate about helping others manage the difficulties of living with a chronic illness.

Follow Cathy on Twitter.

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