Elissa W. - Diagnosed Age 26

In 2016 I was living in NYC and teaching in Harlem mostly carefree. I was becoming unhappy and began feeling anxious and exhausted. People noticed, but assumed it was stress at work. I resigned at the end of the year and moved home with my parents for what was supposed to be only a month.

They noticed changes in my personality and became concerned when I couldn't stomach food. By the end of the summer I was 91 lbs., had three hospital stays and was diagnosed with SLE within my first hospital visit.

My red and white blood cell counts were so dangerously low that initially my parents were told I might have leukemia. That was ruled out, and my parents were told I had kidney damage (nephritis class 5).

I was released despite my mother’s insistence that I was not ready. We were home for two days before I returned for my second hospital stay. They suspected my gallbladder was inflamed and needed to be removed. But, surgery wasn't an option because my blood counts were too low, but there was a potential risk of my gallbladder bursting. Luckily, my gallbladder was never inflamed.

I was released from the hospital again. Vomiting persisted with intense stomach pains on my left side. My pain and vomiting became so violent that I began vomiting stomach acid and bile. My rheumatologist told my parents if it continued to bring me in.

They did and he told them to bring me to my gastroenterologist immediately. While waiting in the exam room, I had a grand mal seizure. I was rushed to ICU. My seizure was a result of high blood pressure, leading to a brain bleed and swelling.

After my release, I went home where I began seeing specialists, going to physical therapy and speech therapy and working on executive functions I had lost. I was almost 27, lost my ability to shower myself, walk, speak, and write my name. My parents were my advocates and refused to accept this was to be my “new normal.”

I worked hard in recovery and taught for the remainder of the year. I traveled Europe this summer, I'm back in NYC and changing careers. I'm hoping to be a speech pathologist.

A very special person once told me that there are two kinds of patients with chronic illnesses. There are people who live like they are chronically ill, and there are people who have a chronic illness.