In this episode, I am joined by Roxy Murray, also known as the “Multiple Sclerosis Fashionista”. Roxy is a passionate MS advocate, diversity and inclusion specialist, and a powerful voice for underrepresented communities in the chronic disease space. After being misdiagnosed and undergoing invasive treatments for eight years, Roxy turned her frustration into a drive for empowerment and advocacy.
In our conversation, we delve into Roxy’s personal journey with MS, the challenges she faced as a young, queer woman of color in the healthcare system, and the ways she uses art, fashion, and community building to make the unseen seen. We also discuss the unique issues faced by LGBTQIA+ individuals with chronic illnesses and how representation in advocacy campaigns can drive meaningful change.
Roxy’s message is clear: empowered patients empower others. Whether it’s through her bold fashion choices, storytelling on her podcast Sick and Sickening, or tireless advocacy for diversity, Roxy shows us that living with MS doesn’t mean sacrificing your identity, style, or voice.
So listen in or read the short version of the interview and let Roxy’s energy and attitude encourage you to accept yourself as you are, no matter what challenges you face.
Klicken Sie auf den unteren Button, um den Podcast zu laden.
Table of Contents
Nele von Horsten: Hi, Roxy! It’s such a pleasure to have you on the show. A big hello to London!
Roxy Murray: Hi, thank you for having me. It’s great to be here.
Introduction - Who is Roxy Murray?
Nele von Horsten: Let’s start by introducing you to the audience. Could you share a bit about yourself and your journey with MS?
Roxy Murray: Of course! My name is Roxy Murray. I’ve been living with relapsing-remitting MS for 18 years, literally half my life. My first symptoms appeared when I was 18—I woke up with blindness in my right eye and double vision in my left. It was terrifying. At first, doctors suspected a brain tumor, then diagnosed me with lupus and other conditions like benign intracranial hypertension and anti-phospholipid syndrome. For eight years, I underwent invasive procedures like lumbar punctures every six to eight weeks without a correct diagnosis.
Finally, at 26, after meeting a neurologist who took a fresh approach, I was correctly diagnosed with MS. She tested my spinal fluid and discovered oligoclonal bands. The mix of relief and anger I felt was overwhelming—I finally had an answer, but I had also endured years of unnecessary trauma.
Personal Experiences and Coping Strategies
Can you briefly share your personal journey with MS and how it inspired you to become a patient advocate?
Roxy Murray: That experience of being invisible and misunderstood drove me to ensure no one else feels the way I did. Advocacy became my way of turning frustration into action. I’m passionate about representation and visibility, especially for marginalized groups within the MS and disability communities.
In your experience, what are some of the most effective coping strategies or self-care practices for managing the daily challenges of living with MS?
Roxy Murray: At first, I had no coping mechanisms—I was in denial. I wanted to live my life as any 18-year-old would, without limitations. Therapy helped me process my emotions and find strength in vulnerability. Community support was also crucial. Initially, I didn’t know anyone my age or of my background with MS. Social media, especially Instagram, helped me connect with people and realize I wasn’t alone.
On a practical level, maintaining a routine that includes exercise, proper nutrition, and rest has been key. But the emotional connection to others in the community—finding people who truly understand—was life-changing.
Diversity and Inclusion in Chronic Illness Advocacy
How does your experience as a diversity and inclusion specialist shape the way you advocate for MS patients and others with chronic illnesses?
Roxy Murray: It’s made me unapologetic about creating inclusive spaces. Advocacy must reflect all experiences because MS isn’t the same for everyone. My work focuses on amplifying underrepresented voices, like those of people of color or the LGBTQIA+ community.
What unique challenges do LGBTQIA+ individuals with chronic illnesses face, and how do you incorporate these issues into your advocacy work?
Roxy Murray: There are so many challenges, starting with invisibility. Healthcare often assumes heteronormativity—for example, doctors asking if you want children without considering queer relationships or other family structures. Trans individuals with MS also face unique issues, like menopause-related symptoms due to HRT. These experiences need to be part of the conversation.
Another layer is safety. Not everyone has a supportive home or community, especially in environments hostile to queer identities. This isolation can exacerbate the challenges of living with a chronic illness.
Empowerment and Community Building
You often say, “empowered patients empower patients.” Can you expand on what this means and how it guides your work??
Roxy Murray: Empowerment is about giving people the tools and knowledge they need to make informed decisions. When patients feel in control of their choices—like choosing a treatment—they gain confidence. Sharing stories is also incredibly powerful. Hearing someone describe an experience similar to yours can validate your feelings and inspire hope.
For example, finding colorful, stylish mobility aids changed how I felt about myself. It wasn’t just about practicality—it was about preserving my personality and dignity. Empowerment is contagious—when one patient feels strong, they can inspire others to feel the same.
How do you ensure underrepresented MS patients are heard in campaigns and decisions?
Roxy Murray: I don’t stop talking! I push brands and organizations to include diverse voices at every stage of development. If you’re creating a product for patients, you need patient input from the beginning. This saves time, money, and ensures the final product truly meets our needs.
The Role of Art, Design, and Fashion in Advocacy
You use art, design, and fashion in your advocacy. How does this approach help communicate your message?
Roxy Murray: Fashion and art are powerful tools for grabbing attention and sparking conversations. I love vibrant colors and alternative styles, which reflect my personality and make people curious. When someone compliments my mobility aid, it opens the door to discuss MS and disability in a positive way. It shifts the narrative from pity to empowerment.
The Sick and Sickening Podcast: Goals and Impact
What motivated you to create the Sick and Sickening podcast?
Roxy Murray: Initially, it was my frustration with being invisible. I wanted a platform to share my story and connect with others. Over time, the podcast expanded to include broader topics like disability, race, sexuality, and mental health. I wanted to tackle taboo subjects and create a space where people feel seen and understood.
Quickfire Q&A Session
Complete the sentence: "For me, multiple sclerosis is...."
Roxy Murray: Confusing.
Which website can you recommend on the topic of MS?
Roxy Murray: Shift-MS. It’s an amazing resource.
What development would you like to see in the field of multiple sclerosis in the next 5 years?
Roxy Murray: A cure would be ideal, but realistically, I’d love to see a global MS community that’s more connected and inclusive.
Farewell
What advice would you give to MS patients who want to become advocates?
Roxy Murray: Share your story. Find a supportive community and don’t underestimate the power of your voice. Your experience can inspire and empower others.
What message of hope would you like to share with those living with MS?
Roxy Murray: You’re not alone. There’s a global community of MS warriors ready to support you at any time.
How and where can interested people find you online?
Roxy Murray: My website is www.themultiplesclerosisfashionista.com. I’m also on Instagram as @multiplesclerosisfashionista, on YouTube and on LinkedIn as Roxy Murray. You can find my Sick and Sickening podcast on Spotify and other platforms.
Nele von Horsten: Thank you so much, Roxy, for sharing your journey and all the important work you do.
Roxy Murray: Thank you for having me—it’s been a pleasure!
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
And at many more places.
* This text contains affiliate links. This means that I get a small compensation if you buy the product recommended by me through the link. For you nothing changes in the price of the product. And it helps me to pay for the blog and to write new posts.
