Every day for about a year, I was so exhausted and I didn't understand why. It was my sophomore year of college, and I would take naps twice a day between classes and still sleep at least 10 hours every night. College was hard work, but I knew this was beyond the normal academic fatigue. During the end of spring semester, I started noticing that I would bruise easily. Bruises appeared on strange places like my fingers and eyelids.

On summer break, I was pushing a lawn mower and noticed these tiny reddish-purple dots. I’d have to sit down and take a nap in between cutting the grass, or walking to another room. I went to bed that night, and woke up the next morning with the dots across my stomach, arms, and thighs. It seemed that any amount of light pressure from rolling over in my sleep caused these tiny dots to appear– knowing something was not right I went to the hospital.

The doctor came back in and announced that they were keeping me overnight. My platelets were at 6,000 and I would immediately need an IVIG and a platelet transfusion. I was shocked, scared, and yet somehow also relieved that this unexplainable bone pain, fatigue, and shortness of breath finally had a name. After years of medical gaslighting and confusing symptoms, I was diagnosed with ITP and Lupus.

I was discharged with high-dose steroids and remained on them for a long time. Because of the side effects, my body changed: my face was puffy, my weight would fluctuate rapidly, I craved sugar, became increasingly irritable, bloated, and grew a mustache! Having an autoimmune disorder is a forever-dance of trying to love the new version of yourself. Eventually I was weaned off the steroids and my platelets stabilized, and with this my appearance changed back again.

For a long time I had been doing fine, but in 2021, about four years after my initial diagnosis, I began to notice the signs. I was bruising a lot, everywhere in fact, but there was no petechiae. I was fatigued and worried so I went to the hospital. My platelets had fallen to about 60,000. The doctors and nurses reassured me that if I took prednisone I would be fine. After a follow up with my PCP, the next day she called me and told me that I needed to get to an Emergency Room immediately. My platelets had dropped to 2,000. It was incredibly surreal because even though I had been tired, the fatigue was not as obvious as it had been the first go-round.

I was admitted to the ICU and told not to cough or sneeze or I may have internal bleeding. My experience in the hospital was traumatic and what got me through was creating art and listening to music. After a near death experience, I felt so grateful to be alive; but the next year was not easy. It included getting my blood drawn every single week, so I collected my platelet numbers to include in my artworks. I received a bone marrow biopsy and could feel everything. I painted my way through the everyday pain. My platelets would not stay up, not even with prednisone, IVIG, or platelet transfusions. I couldn’t hold a job because I was in so much pain, and I remember the nausea being on another level.

My hematologist suggested I try Rituxan. We had to fight the insurance company for a couple months to finally get the Rituxan transfusion approved. After the treatment, we didn’t see immediate results. My hematologist was going to start me on Promacta, but luckily my platelets began to increase. Rituxan has been a life-saving medicine for me, and I am so thankful to my hematologist, but I know that this is not the case for everyone.

Three years later and my platelets are still stable on their own. I am grateful for my body, even on the days where it doesn't function well, because it is trying its best. Every day I have on this side of earth is a gift that I don’t take for granted.

I am not sure if my platelets will drop again but there is one thing I know for sure: anyone with ITP or any other autoimmune condition is the embodiment of resilience. ITP can be really scary, so those who feel afraid, confused, discouraged, or lost, know that you are not just a number. You and I may be rare, but we are not alone.