This is the story of how I got diagnosed with lupus.
When I was 16 years young (I’m 40 now), I got really sick to my stomach and couldnt eat and lost 30 lbs in 3 months. My parents were very concerned as I was also very exhausted all of the time. Like sleeping as soon as school was over and not waking up in time to get there without a tardy note.
So they carried me from doc to doc. I was even put in the hospital where they tested me for STDs and drug use because they couldn’t “find anything.” Do you know how many times I have heard that over the years? Too many to count, but I will never forget that first time in the hospital. I was so sick and just wanted to be a regular teenager who could eat and do stuff with their friends.
So my parents were like well what do we do now? And there was nothing we could do because no doctor in the whole town could find anything in my body that was screwing up my life.
Fast forward a few months (turned 17!) and I had an event that changed my life forever. I went to the water park without sunblock and my body was covered in second degree sunburn. I couldnt move without pain. It was the absolute worst pain I have ever been in as the sunburn covered my whole body, face and scalp and all!
After many bottles of aloe, the sunburn healed mostly, except for this rash on the back of my neck. It wouldnt go away. So my back then internist (she was a fucking joke of a doctor) sent me to a dermatologist. He did a skin biopsy, which hurt like hell.
I remember the day the nurse called with the results. My friend “Thelma” and I were just chillin at my house and the landline phone rang (cell phones were for rich folk back then). I answered and the nurse said “you have sub-acute cutaneous Lupus.” All I heard was “lupus” and I immediately started crying.
See my mom had just been diagnosed with lupus and she was very sick. So my immediate thoughts were holy shit I’m gonna be sick like Mom. Or die. Seriously those were my first thoughts.
Turns out in my 30s I got just as sick as she was back then. But thats another story.
Anyway, back to 17 year old me. I continued to only get treatment for the sub-acute cutaneous lupus diagnosis until I was about 18. Thats when I was finally able to get in to a rheumatologist office (small town wait list was over a year), and she diagnosed me with systemic lupus, just like my mom.
I spent the last two years of high school at home and a teacher would bring me my work and take it back to school. Thats how sick I was. The fact that it took almost three years to get a proper diagnosis and treatment was ridiculous and it still happens to this day (currently going through it for the last five years with stomach issues).
The fact that a teenager was put in the position of getting checked for STDs and drugs instead of believing she was sick astounds me to this day. Forgot to mention that they also told my parents “she’s just depressed.” Uhm duh Im sick and you losers are calling me a sex addict and drug user, of course I seemed depressed!
So that’s the story of how I found out I had lupus. Now, my parents always have said that they think I had it since I was born because I was always sick. I had a two week stay in a childrens hospital when I was three or four years old and it turned out to be a bladder infection from what we later found out was a misaligned uterer going into my bladder. Which I might mention could have been a birth defect that wasnt detected because hashtag the 80s. We will never know…
If you like my stories I have tons! Let me know!
As always, much live and peace dudes! -kc