I was sick before I ever had a name for what was happening to me.

I spent my junior and senior years of high school sick, and my senior year I was homebound. While other teenagers were planning graduation and their futures, I was learning what it meant to have a body that could completely change your plans.

Then came multiple miscarriages. At 22, I was finally diagnosed with lupus. But having a name for it didn’t make it easier. There were years of failed medications, side effects, flares, hospital stays, doctors, tests and starting over.

Lupus has cost me things I can never get back.

I’ve missed important moments because I was too sick to be there. I can’t simply spend a day in the sun without considering what it may do to my body. I had to resign from a job I loved because working outside and the sun exposure were making me sick. I didn’t leave because I stopped loving my work. My body simply couldn’t keep doing it.

My first marriage ended, and one of the words that has stayed with me all these years was that “my lupus was holding him back.” Imagine carrying a disease you never asked for and also carrying the weight of believing it makes you a burden to someone you love.

Through all of this, I’ve also been a mother. My children have watched their mom be sick, disappear into hospital stays and miss things I desperately wanted to be there for. One memory I will never forget is my daughter learning how to do my makeup because she wanted to know how in case something ever happened to me.

The Lupus Foundation of America became a source of support when I needed people who understood. Eventually, I went from needing that support to leading support groups myself and helping others navigate this disease.

Today, I’m remarried, raising my family, building a career and serving my community. I have built a beautiful life but that does not mean lupus hasn’t taken pieces of it.

When lawmakers make decisions about lupus research, treatment, public health programs and access to care, they aren’t deciding numbers on a page. There is a real person behind every number.