#092: Empowering the MS Community: Advocacy, Diversity, and Inclusion with patient expert Roxy Murray
Manage episode 456127229 series 3562061
Roxy wants to empower underrepresented groups such as people of color or the LGBTQIA+ community to increase awareness of diversity in MS.
You can read the short version of the interview here: https://ms-perspektive.com//92-roxy-murray
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.
Table of Contents- Introduction - Who is Roxy Murray?
- Personal Experiences and Coping Strategies
- Diversity and Inclusion in Chronic Illness Advocacy
- Empowerment and Community Building
- The Role of Art, Design, and Fashion in Advocacy
- The Sick and Sickening Podcast: Goals and Impact
- Quickfire Q&A Session
- Farewell
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.
What message of hope would you like to share with those living with MS?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?My website is www.themultiplesclerosisfashionista.com. I’m also on Instagram as @themultiplesclerosisfashionista and on LinkedIn as Roxy Murray.
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See you soon and try to make the best out of your life, Nele
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