Voices Across America

Lupus Patient Builds a Support Community

Mari

State: Illinois
Congressional District: IL05

Diseases

Chronic Pain, Immune Disease, Migraine

Issues and Challenges

Mari has encountered: Access to Medicine, Copay Issues, Medicare / Medicaid Issues, Medical Records Access, Surprise Billing, Caregiving, Disability, Financial Assistance, Gaslighting, Invisible Illness, Medical Devices, Social Security Disability, Step-Therapy / Fail First, Transparency in Health Care

My Story

My name is Mari Gonzalez. I'm from Chicago. I'm a proud mom of a 28-year-old young woman. I'm a daughter, patient, caregiver and an advocate.

I have lived with SLE - Systemic Lupus Erythematosus, Fibromyalgia and Sjogrens Syndrome for almost 10 years. I have been also living with Raynauds's Phenomenom since 2019. Living with so many incurable illnesses is difficult. Lupus could attack any of our organs, tissue, cells, blood and causes so much pain, extreme fatigue, rashes, bruises, inflammation, insomnia, depression, irritability, sensitivity to sun and so much more.

I facilitate 3 support groups: 2 in English/1 en espanol. Even though I'm no longer able to work 2-3 jobs at once, I have made it my passion to help educate and empower others about lupus. I was alone and uneducated on these illnesses when I was diagnosed and I don't want anyone to feel the way I did.

We need better research so that people aren't waiting 5 - 6 years to be diagnosed. One way I try to bring awareness is in the month of May I dress up trees, light poles and fences with purple ribbons. Yard signs are also placed in many places with information on lupus. I sit on panels, webinars, support groups and speak with so many people that I decided to start a lupus group on social media. "Lupus Spoons" is the name on all of my socials.

My Motivation and Inspiration

I am motivated by the support I get from my family. My daughter, mom and dad are always with me. I'm my mom's caregiver and she's mine. My daughter is my rock. I became so motivated to help others because I was all alone 10 years ago when I heard those words, "you know you have lupus, right?"

I do not want anyone recently diagnosed to not know what lupus is or to feel alone. I facilitate 3 support groups to try to reach out to many people. Education, empowerment, compassion and understanding of lupus is my passion.

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