Invisible but Not Silent: Why I Advocate for Chronic Illness Warriors
Diseases
Chronic Pain, Ear / Nose / Throat Disease, Endocrine Disease, Eye Disease, Gastrointestinal Disease, Immune Disease, Rare Disease, Skin Disease
Issues and Challenges
Janet has encountered: Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Surprise Billing, Caregiving, Copay Accumulator, Disability, Gaslighting, Invisible Illness, Premium Payments, Prior Authorization, Social Security Disability, Step-Therapy / Fail First, Underserved Community
My Story
Hi! My name is Janet Marx, and I have been married for 28 years. I’ve been ill most of my life. I have lupus, Sjögren's syndrome, fibromyalgia, and the whole package. I feel it’s cruel to live with any invisible illness. Last year, I was awarded a scholarship to go to the Lupus Summit in Washington, D.C., and I was honored to talk to policymakers about health reform through the Lupus Foundation. I’ve also started a Facebook group called Chronic Illness Warriors United (You Are Not Alone). As a lupus advocate, I want to learn better how to advocate for myself, my loved ones, and others. I received some advocacy training at the Lupus Summit, but it made me hungrier for more.
My Motivation and Inspiration
Others who are advocates help others by spreading awareness about what it’s like to live with a chronic illness. They advocate to Congress to better assist patients. Fifty percent of foreclosures are due to medical debt.
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