Alright – so today we’ve got the honor of introducing you to Julie Stamm. We think you’ll enjoy our conversation, we’ve shared it below.

Hi Julie, thanks for joining us today. Was there a moment in your career that meaningfully altered your trajectory? If so, we’d love to hear the backstory.

A defining moment in my professional career was my diagnosis with Multiple Sclerosis (MS) in 2007. This life-changing event not only shaped my personal journey but also set me on a mission to educate, advocate, and support others battling chronic illnesses.

Backstory:

In 2007, I was diagnosed with MS, a chronic illness that dramatically altered the course of my life. Instead of allowing the diagnosis to hinder me, I transformed it into a driving force for my work. I dedicated myself to understanding the complexities of chronic illnesses and committed to alleviating the burdens faced by patients. My efforts led me to collaborate with physicians, patients, and foundations globally, further broadening my impact and reach.

The Moment:

Another pivotal moment came after the birth of my son in 2016. I realized that there was a significant need for support for the children of parents with chronic illnesses. This insight inspired me to write a children’s book entitled “Some Days: A tale of love, ice cream, and my mom’s chronic illness,” which aimed to normalize differing abilities and demonstrate that thriving despite challenges is possible.

Lessons Learned:

Turning Adversity into Advocacy: My MS diagnosis could have been a setback, but I chose to use it as a platform to help others. This taught me the power of resilience and how personal struggles can fuel a greater purpose.

Addressing Unmet Needs: Recognizing the lack of resources for children of parents with chronic illnesses, I shifted my focus and created materials to support this underserved group. This highlighted the importance of identifying and addressing unmet needs within a community.

Storytelling as a Tool for Change: Through my book and subsequent projects, I learned that storytelling can be a powerful tool to raise awareness, promote understanding, and inspire change. My work transformed the narrative around chronic illness from one of apology to one of strength and resilience.

Inclusivity and Representation: Co-creating “52 Essential Inclusion Skills” with Dr. Jenny Woo further reinforced my commitment to inclusivity. I learned that representing diverse abilities and fostering an environment of kindness, compassion, and respect is crucial in creating a more understanding and supportive society.

My journey underscores the importance of transforming personal challenges into opportunities for advocacy and change. My work continues to inspire and support countless individuals, demonstrating that resilience and compassion can lead to significant societal impact.

Julie, before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?

For those who may not be familiar with me, my name is Julie A. Stamm, and my journey into advocacy and support for those with chronic illnesses began with my own diagnosis of Multiple Sclerosis (MS) in 2007. This diagnosis was a turning point that transformed my life’s direction and fueled my passion for helping others navigate similar challenges.

After my diagnosis, I decided to channel my experience and knowledge into education and advocacy. I immersed myself in learning about chronic illnesses, particularly MS, and sought to understand the struggles faced by patients and their families. This journey led me to collaborate with physicians, patients, and foundations around the globe, working tirelessly to lessen the burden on those battling chronic conditions.

I am deeply committed to creating supportive resources and fostering understanding through various forms of advocacy. My work includes:

Writing and Storytelling: My children’s book, “Some Days: A tale of love, ice cream, and my mom’s chronic illness,” aims to normalize differing abilities and show that thriving despite challenges is possible. It’s designed to help children understand and cope with a parent’s chronic illness.

Creating Educational Tools: In 2023, I co-created “52 Essential Inclusion Skills – An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities” with Dr. Jenny Woo of Mind Brain Parenting. This guide is a movement to change the apologetic tone often associated with disabilities, transforming it into uplifting stories that highlight resilience and inclusion.

What sets my work apart is my commitment to authenticity and inclusivity. I strive to represent the underrepresented and bring awareness to the diverse abilities that impact our lives. My approach is deeply personal, grounded in my own experiences and the stories of those I’ve had the privilege to support. I believe in the power of storytelling to foster empathy, understanding, and change.

I am most proud of the impact my work has had on individuals and communities. Transforming the narrative around chronic illness from one of shame or apology to one of strength and resilience has been incredibly rewarding. Seeing the positive responses to my book and the inclusion skills guide, and knowing that they are making a difference in people’s lives, is the greatest achievement of my career.

I want people to know that my work is driven by a genuine passion to support and uplift others. Whether through my writing, educational resources, or advocacy efforts, my goal is to create a world where diversity is celebrated, and everyone is empowered to thrive despite their challenges. My journey has taught me that resilience, compassion, and community support are key to overcoming any obstacle.

Thank you for taking the time to learn more about me and my work. I am here to continue this journey with you, advocating for a future where kindness, understanding, and respect for all abilities are the norm.

Can you share a story from your journey that illustrates your resilience?

One story that vividly illustrates my resilience happened just before my MS diagnosis was confirmed in January 2007. It was a time when I was at my lowest, feeling completely dismissed by countless physicians and desperately searching for answers.

I remember one particularly harrowing day when I was down to 97 pounds, losing weight rapidly, and my body was failing me in ways I couldn’t ignore anymore. I was humiliated, devastated, and feeling utterly alone. I had been battling with the uncertainty of my condition, and it had reached a point where I couldn’t hide it anymore. The progression of my illness was becoming impossible to mask.

Then, in January 2007, everything changed. I finally received the diagnosis of Multiple Sclerosis. It was a moment of validation, a sense of relief that the man behind the curtain was no longer a mystery. I wasn’t crazy; there was a real, tangible reason for my suffering. That moment, knowing the truth, gave me the strength to fight back. I could finally channel my energy into a battle with a known enemy rather than an invisible foe.

Since then, my life has been a series of strategic battles, each day meticulously planned to manage my symptoms and maintain a semblance of normalcy. The invisible nature of MS means that, most of the time, I can choose who knows about my condition and how much they know. I take pride in the fact that only a few people are aware of my struggles because I’ve decided to share that part of my life with them.

We often hear about learning lessons – but just as important is unlearning lessons. Have you ever had to unlearn a lesson?

The diagnosis taught me that my symptoms and concerns were always valid, regardless of whether they were immediately acknowledged by others. I realized that I had the right to advocate for myself and that my lived experience was an essential part of my healthcare journey. This unlearning process involved several key steps:

I learned to trust my own instincts and perceptions about my body. I stopped doubting myself just because others did.

I began to advocate for myself more assertively, ensuring that my voice was heard and my concerns were taken seriously by healthcare professionals. This sometimes meant seeking second opinions or changing doctors until I found those who would listen.

I immersed myself in learning about MS and other chronic illnesses. This knowledge empowered me to have informed discussions with my doctors and to be a proactive participant in my own care.

My experience taught me the importance of supporting others who are going through similar struggles. I dedicated myself to advocacy work, ensuring that others wouldn’t have to face the same dismissal and invalidation that I did.

By unlearning the belief that my symptoms were only valid if acknowledged by others, I reclaimed my agency and became a stronger advocate for myself and for others. This lesson has been crucial in my journey, reminding me that our experiences and voices matter, and that we have the right to be heard and respected in our healthcare journeys.

Contact Info:

• Website: https://www.iamstamm.com
• Instagram: @iamstamm
• Facebook: Julie A. Stamm
• Linkedin: Julie A. Stamm