When I was fourteen I was diagnosed with Juvenile Rheumatoid Arthrits (JRA). In short, it means my bones are as old as my soul with pain as deep as an ocean. It means the cold is more bitter and makes my bones stiffer. It means I have a sixth sense when the rain is about to pour because “I feel it in my bones” quite literally. It also means I have been on countless number of medications for the past 8 years and stopped fearing needles.
What is RA? (click it)
I didn’t realize how many times I went in doctor visits until someone asked “what, are you like dying or something?” This autoimmune disease may or may not stick with me for the rest of my life. I spent so much time in hospitals that I became fascinated by it all. I went into college wanting to pursue a medical degree. I spent countless of hours every month for years to try to bring my flares down. I tried injections that made me nauseous and used to take up to six pills daily. Hospitals became a place of hope and healing for me.
They also became a place where I felt like a burden. I didn’t have health insurance. All those doctor visits, medication, and time off for my parents cost a lot of money.
When the Affordable Care Act (ACA) came out, as an undocumented immigrant I didn’t qualify. Only being able to work part time (in positions that helped me move forward in my career) meant I did not qualify. As I finished my first year, I realized that my true passion came in fighting for policy change. I did not want another young Latina to face this burden that I did. I did not want undocumented parents to felt the guilt my parents did of not having health insurance or the shaming they received for being undocumented.
As the conversations continue about health care, I want to highlight that some of us still don’t qualify. Not only that but, the new proposals from Republicans means that even more people would be left out.
Health care is a human right. It is not a luxury item. It is not only for the elite. This is not a boost for the ACA either because it has a set of problems too.
With all honesty, I am writing to be real and to be honest about my life. I am writing to let other people who also live a reality similar to mine that your pain is valid and that your story should be heard. It is to remind people to make sure to include undocumented immigrants at the table. It is to say that while we fight for fair and humane comprehensive immigration reform; we do not stop there. My fight for justice and equity doesn’t end at immigration or healthcare.
Living with an autoimmune disease that looks invisible is difficult. It basically means that my body attacks itself (yeah way to go body), and it means that most of the time it’s a quiet struggle. It’s like putting your phone to charge at night but when you wake up you realize you didn’t plug it in, or it stopped charging at 50%. Sometimes I wake up with 100% and sometimes I’m at at a critical 20%. Some days I can’t, but I think that’s okay. If you too have an “invisible” disease I hope you know you’re not alone. Your pain is real.
For now, know that you and I are fighters.
I’ll write more on this soon, I think.