Erika’s Story: Still Me
Living, Loving, and Advocating Through Chronic Illness
I’m a mom to three amazing kids, married to my best friend, and I work in philanthropy/development at a medical school. I’m also living with six autoimmune diseases, including SLE, Sjögren’s, Dysautonomia, RA, Pernicious anemia, and a few others that make everyday life a bit of a juggling act.
I’m a proud South Texan who loves iced coffee, meaningful conversations, and singing ’90s songs a little too loudly in the car. I never imagined I’d become an advocate for chronic illness, especially not while dealing with all the medical chaos myself. But life had other plans.
The Beginning Was a Blur
Like so many others, my journey started with years of vague symptoms and unanswered questions. My hair fell out, and I felt fatigued, like I was dragging cement blocks. I had joint pain. Brain fog was so intense that I’d forget conversations five minutes after having them.
I knew something was off, but every doctor seemed to brush it off as stress or hormones or just being “a tired mom.”
It took 7 years and a whole lot of persistence to finally get answers. And even when I did, the answers came with more layers: conflicting diagnoses, medication side effects, and constant uncertainty. But I kept showing up. For my kids. For myself. And eventually, for others.
Turning Pain Into Purpose
One day, I realized I wasn’t just navigating this alone anymore. I was part of something bigger.
I started sharing my story, first in small ways: support groups, DMs with other patients, blog comments. Then came invitations to sit on panels, speak at national events, and meet with pharmaceutical companies to share the patient perspective.
Now I serve on the Lupus Voices Council, a patient advisory council, and I’m part of the PALS (Patient Advocates for Lupus Studies) program. With PALS, I’ve had the honor of helping push for more inclusive clinical trials for people of color, who often get excluded from research.
I’m loud about it because we deserve to be seen.
To be counted. I regularly meet with policymakers to push for more funding and comprehensive care for patients like myself. I’ve also participated in clinical trials and help support others navigating their diagnoses through peer-to-peer education.
It’s not about having all the answers. It’s about making sure the right questions are being asked. And that someone like me, or my daughter, or your cousin, or your neighbor, won’t have to wait years to be believed.
The Day-to-Day
Most days, I wake up and check in with my body like it’s a weather app.
“Are we flaring today?
What hurts?
Can I do the thing or should I cancel?”
It’s exhausting, frustrating, and honestly kind of ridiculous that I have to make peace with feeling awful just to be considered “functioning.” But I’ve also learned how to slow down (sometimes). To ask for help (working on it). To speak up even when my voice shakes.
What I’ve Learned
Advocacy saved me. It gave me purpose when I felt like my life had been put on hold. It’s given me a platform to help others feel less alone and to help change the system that failed so many of us for so long.
To anyone new to this journey: You don’t have to be brave all the time.
Some days, just getting out of bed is an act of strength. You’re allowed to grieve, rage, cry, and still be proud of yourself. You’re doing better than you think.
If You Only Remember One Thing…
Chronic illness doesn’t make me fragile; it’s created a fire within me. I fight for my kids, for future patients, and for the version of me who once thought she was just “lazy” or “crazy” or “too sensitive.”
I show up tired, in pain, and full of passion.
I’m still here. I’m still me. And I’m not done fighting.
– Erika
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.
