Meet an Invisible Condition Self-Advocate
In this series, we interview people who live with one or more invisible conditions (chronic illness, disability, or disease) who are fierce self-advocates.
Struggling to advocate for yourself?
If you are struggling with how to advocate for yourself in the medical system, workplace or community, we invite you to read about our guests’ unique health journeys and how they have stepped out of fear to help themselves succeed and spread awareness.
If you want to share but are afraid, don’t worry, we have the option to post your thoughts anonymously.
Self-Advocacy Q&A with Deborah King: Ulcerative Colitis
“I encourage individuals to prioritize self-awareness and acceptance, recognizing that their health journey is valid and deserving of acknowledgment. I urge individuals to embrace their voice and speak up courageously, knowing that their advocacy has the power to effect change and promote greater understanding and inclusivity.”
Self-Advocacy Q&A with Julie Stamm: Multiple Sclerosis
“The impact of MS on my life has been profound. 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.”
Self-Advocacy Q&A with Jodie Cenci
"I am motivated to continue to disclose and advocate because I know that I had to build that muscle young and a lot of people living with an invisible condition may be new to the medical problems that have underscored my whole life."
Self-Advocacy Q&A with Laura Lee MacPherson
“I think it’s important to note that you don’t always have to disclose. If disclosure will harm you, it’s ok to keep your medical information private. You don’t owe anyone that information.
That said, I do disclose as much as possible because I want to see stigma go away. Self-advocacy journey living with Hashimoto’s.”
Self-Advocacy Q&A with Tania Reitsma
“The worst experience in my youth was when an English teacher with ZERO medical training questioned whether my pain was ‘all in my head’.” Self-advocacy journey living with Ankylosing Spondylitis.