Self-Advocacy Q&A with Julie Stamm: Multiple Sclerosis
Julie Stamm
Sharing my journey with multiple sclerosis, motherhood, career, and advocacy. Insights on managing an invisible condition, emphasizing resiliency and adaptability.
“ I know that one day, this ‘invisible’ disease will be visible for the world to see. I live in constant fear of what will be lost next and yet here I am, fighting, knowing full well that I will adjust and continue to thrive in spite of the challenges. ”
Tell us a bit about yourself, your diagnosis journey and the invisible condition(s) you are living with.
Hello, friends. My name is Julie Stamm, and I want to share with you a glimpse into my journey with multiple sclerosis (MS), a condition that has shaped my life in profound ways.
My diagnosis journey was like a rollercoaster. It took years of countless doctor visits, tests, dismissals, and uncertainties before I finally received the diagnosis that changed everything. MS, an invisible condition that alters life's course without warning. I was just 27 when I got the diagnosis and I was relieved to finally have answers. I wish I could go back and hug that young girl. She has no idea how strong, resilient, and adaptive she will prove to be.
How would your friends describe you and your personality?
If you asked my friends to describe me, they'd probably mention my resilience, optimism, and determination. But what they might not fully grasp is how MS has tested every aspect of my being. It's not just about physical challenges but also the emotional rollercoaster of living with an unpredictable condition.
It's about adapting daily routines, facing limitations, and navigating a world that often overlooks invisible illnesses. I also think I overcompensate with planning and events to help with the guilt this disease inflicts on us all carrying the weight of it.
How has the invisible condition impacted your life?
The impact of MS on my life has been profound. My days are methodically and strategically planned. It's affected my career choices, relationships, and even simple tasks like walking or holding a pen. It's a constant reminder of resilience and adaptability, pushing me to redefine what "normal" means.
As someone with a progressive form of the disease, I know next year will look very different than this year. I know that one day, this ‘invisible’ disease will be visible for the world to see. I live in constant fear of what will be lost next and yet here I am, fighting, knowing full well that I will adjust and continue to thrive in spite of the challenges.
Please share any experiences of stigma or discrimination that you have experienced due to your condition.
Yet, along with physical hurdles, there's another battle: stigma and discrimination. People's misconceptions about invisible conditions can be hurtful. From skeptical glances when I use accessible parking to assumptions about my capabilities, I've faced my share of ignorance and prejudice.
It's a reminder of the work we still need to do as a society to foster understanding and empathy.
What does self-advocacy mean and how have you managed to advocate for yourself? Any advice to share?
Self-advocacy has become my mantra. It means speaking up for my needs, educating others about MS, and challenging stereotypes. It's not always easy, but finding my voice has been empowering.
My advice to fellow warriors? Learn about your condition, connect with support networks, and don't be afraid to assert your rights. Your voice matters. My newest standard is that if I wouldn’t accept this care for my son, I won’t accept it for me. Fight and require the best.
What motivates you to disclose your disability despite the courage it requires?
Why do I choose to disclose my disability despite the courage it demands? Because visibility leads to understanding. It's about breaking barriers, fostering inclusivity, and paving the way for future generations. It's a small act with significant ripple effects.
What encouragement would you offer to someone living with an invisible condition who is considering whether to openly share their journey and experiences?
To anyone hesitant about sharing their invisible condition journey, I say this: You are not alone. Your story matters, and your experiences can inspire change. Take it one step at a time, surround yourself with support, and remember that vulnerability is a strength, not a weakness.
In closing, let's continue to raise awareness, challenge stereotypes, and build a world where invisible conditions are seen and understood. Together, we can turn obstacles into opportunities and create a more inclusive future for all.
Bio: Julie A. Stamm, diagnosed with Multiple Sclerosis in 2007, has dedicated her life to educating, advocating, and supporting those with chronic illnesses, working closely with medical professionals and foundations globally. After her son's birth in 2016, she focused on helping children of parents with chronic illnesses, authoring a children’s book to normalize differing abilities and promote resilience. Her latest project in 2023, co-created with Dr. Jenny Woo, is '52 Essential Inclusion Skills – An A to Z Guide to Kindness, Compassion, and Respect for Diverse Abilities', furthering her commitment to advocacy and representation for the underrepresented.
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