My Experience With Lupus and Insurance Denials

Hi, my names Nicole. I’m 31 and I live in Southern California. My autoimmune journey began in spring 2022 and I instantly knew something was wrong.

The defeating diagnosis process

Everything about this was an obstacle from doctors, scheduling appointments, not being taken seriously, getting insurance, getting approvals, pharmacies, dental etc. Every single thing has been a battle, and it’s like I always have to jump through hoops. When you’re already experiencing overwhelming fatigue, it makes everything so much harder, and honestly, it’s defeating.

Finding a doctor who cared

Prior to this, I was always active and at my healthiest, and when my autoimmune symptoms started, it turned my entire life upside down, and dealing with doctors felt like a joke.

I was constantly passed from doctor to doctor and never got help. I eventually had to go outside UCLA, and that was the first time I found a rheumatologist who cared. But it took 4 to get there. I wasn’t diagnosed until a year later.

The power of a support animal

It was the most defeating thing I’ve been through. My boyfriend got us a dog, and I’m so thankful for my little Pomeranian, Bailey. I don’t think I would’ve made it through this without him. In a lot of ways, you feel like you lose your sense of identity. I lost my income and financial stability. I went through my savings and had to move in with my parents, and in between was judged about medications.

Fighting denials

I was denied disability and am currently fighting that. I was scammed at a bad dentist through dentical and had to pay 3K to fix what they did. The entire system has been so frustrating and I never would have imagined it could possibly be like this.

You're not alone

I try to find joy in the little things like my dog. I hope my story helps you feel less alone, bc going through this makes you extremely strong. I share it as well for everyone who’s been disbelieved or have doctors or people blame it on depression and anxiety or give unsolicited advice. And if you’re not going through this I hope you understand just how strong people with lupus really are.