First, I’d like to say thank you for arriving here. Whether I personally invited you to view my blog or you came across it through a search or you were referred by a fellow lupus Warrior. You are here. You are reading and I thank you.
I was diagnosed with Lupus when I was 23 years old. I was a single mother when I began experiencing pain that for two years was dismissed as carpal tunnel. It wasn’t until I wasn’t able to get out of bed on my own that I requested my doctor to test me for lupus and they found that I did indeed have it. I only knew to ask because my paternal uncle also suffers from the disease and suggested I may also have it. So I have been living with this disease for 13 years now and I wasn’t given much support. There weren’t any blogs, or easy to access ways to gain knowledge or local support groups that I knew of. Not many people were knowledgeable of my disease including the doctors I was expecting to treat me! Friends and family didn’t understand a disease that i didn’t understand myself enough to explain why i was cancelling plans or too sick most times.
I was scared. I was lost. I was confused. I was experiencing things within my body I had no idea how to fix and no one around me truly understood. I felt alone.
So I offer this blog as a way to connect with others who relate to my story. Maybe you’ve been diagnosed with an autoimmune disease and you have these same feelings of loneliness, like no one can relate or understand your pain. Hearing those words You don’t look sick. when inside your body is constantly attacking itself causing you flu-like symptoms and pain. I get it. Subscribe to my blog to follow along and let’s connect.
I’m also doing this blog so people on the outside can get an understanding of maybe someone they love who suffers from not just Lupus but maybe some other chronic, invisible illness. While we may look perfectly fine on the outside, inside our own body is attacking our organs. I have had multiple hospitalizations, pneumonia multiple times, shingles three times, U have been disabled to the point I was in a wheelchair and had to do physical therapy to retrain my body, my teeth are affected thanks to the multiple medications I’ve been on, my lungs are permanently scarred thanks to lupus attacking them and have caused diminished lung capacity. I have been told I need either a lung transplant or a surgery to scrap my lungs. My lung capacity severely limits what i am able do without losing my breath. I have been told my body is shutting down. I have multiple other symptoms I can’t even remember at the top of my head (again, thanks to lupus I have constant brain fog) but my point is, looking me you would never have guessed it. That’s what we mean when we say “invisible illness”, we could be suffering on the inside but our outside appearance would never suggest it. So I hope this blog brings awareness and support.
Support is hard to find. I plan on sharing stories to encourage. To uplift. To motivate. To help get through those days of pain that people sometimes doubt.
Follow my journey.
Rosadela Durruthy is founder of She’s Got Lupus, a non profit organization aimed to improve the lives of those living with chronic illnesses by advocating for mental health, healthy living and raising awareness.