What It’s Like to Live With a Disease No One Believes Is Real: “I Was Drowning From the Inside Out”

Written By TESS KOMAN

A grad student describes her struggle with lupus — one that almost killed her.

Ewo Harrell, 28, has dealt with the debilitating consequences of lupus, an autoimmune disease that affects almost 1.5 million Americans for nearly a decade. Now in her final year of grad school at Brown, the illness prompted her to pursue a master’s in public health to become a patient advocate for patients like herself and become heavily involved with The Lupus Foundation of America and National Kidney Foundation. Harrell spoke to Cosmopolitan.com about her kidney transplant, medically induced coma, and what it’s like to finally be able to live.

When I was a sophomore at Union College, I went to China for a semester abroad; while there, I was feeling very sluggish and started having muscle pains. And I’m thinking, OK, I’m not exercising regularly, let me go exercise, but when I would try to exercise, I was short of breath and I would have a pain in my left side. Eventually I was hospitalized. I had fainted and they diagnosed me with severe constipation. A lot of people kind of laughed it off thinking I needed to drink more water, and that I wasn’t taking care of myself.

So then I get back to [the U.S.] and I start getting these infections — EBV [the Epstein Bar virus], and upper respiratory infections. Again, when you’re in a college situation in upstate New York, it’s quite common — I was told, “people are getting sick, it’s going around.” I had pneumonia, extreme fatigue, and muscle and joint pain, and people brushed it off! I started going to see all types of different specialists and within six or seven months, I heard everything from “You might have cancer, you might have Crohn’s, you might have leukemia, we have to test you for this and that.”

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