What It's Like to Live With a Disease No One Believes Is Real: "I Was Drowning From the Inside Out" (2022)

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."

What It's Like to Live With a Disease No One Believes Is Real: "I Was Drowning From the Inside Out" (1)

Courtesy of Ewo Harrell

I was feeling alone. I had this awful roommate and everyone was taking her side — she wanted to have a party, but I was too tired and in pain and didn’t want to party, you know? But I was making it to class and was smiling and was sociable and seeing people, so [people thought] I was making it up. Her gossiping about me and saying something that was not true, it fazed me. That was a lot to deal with, [but] I’m not going to hunt down the 50 people she told and say "I’m sick" or "We don’t know what’s going on" because it’s personal. I remember trying to explain to a guy friend of mine weeks after my diagnosis what I had been through, and he said, "I think it’s in your head because you were fine. It couldn’t have been that bad because you hung out a lot." I’ve never talked to him about it again, not even to this day, though he’s been super supportive.

That spring break I went home to Florida. After a couple of days at home, I woke up one day and I could not get out of bed. Not because it was painful, but because I could not move my legs. Obviously that scared my [dad] and he took me to a primary care doctor. The doctor gave me synthetic opiates to relieve the pain, but when that didn’t work, and after three days of watching me not be able to move, my dad took me to the emergency room. I was scared I was dying, but I don’t remember crying because I wanted to protect my family. I didn’t want them to see me scared.

A team of doctors there diagnosed me with lupus. There are different ways to diagnose lupus, but for me it was just a series of tests and a bone marrow biopsy that confirmed it. After that they were kind of like, "You can go into remission, but there is no cure. Here’s a doctor that you need to follow up with." I remember them telling me to get enough sleep. That’s it!

What It's Like to Live With a Disease No One Believes Is Real: "I Was Drowning From the Inside Out" (2)

Courtesy of Ewo Harrell

Doctors then began treating me with really strong doses of steroids to reduce inflammation and subsequently help with pain, but we still don’t know what kinds of consequences being on drugs like these for a long time can have. I found out later that [this course of treatment] was the wrong thing to do based on my demographics; for [African Americans], any damage to the kidney, let alone kidney failure, dialysis, or transplant, may make it more difficult for a woman to carry a child later in life.

So I dealt with flare-ups from the lupus for the next two years at school, and when I would come home, I would always see my doctor to adjust my medications as needed. After my graduation — which was an amazing experience because there were so many times I didn’t feel I could make it to that point — I moved to Paris with my then-boyfriend. While I was there, I was having other, unfamiliar symptoms. I was gaining weight, but I was in Paris eating bread and cheese! I was also in love! The pain and the fatigue were normal by that point, so I didn’t suspect anything. On my birthday that year, I came home early from a surprise party my then-boyfriend had planned at my friend’s house because I was not feeling well. I Skyped with my parents who told me I looked great. I was like, "Well, I feel awful." I remember going to bed and when I woke up, my BF had come home and he was like "Oh my god, babe, what’s wrong with you?" From my belly button down was twice the size it should’ve been. My body was completely swollen. I asked him if he thought it was lupus and he was like, "That doesn’t look like lupus, we have to go to the doctor."

I remember just trying to keep my head up because I kept falling asleep. We got checked in and I was trying to be positive. Meanwhile, [my boyfriend] would tell you that he was freaking out because the doctor had told him I was dying and that he needed to get me to the hospital immediately. My body was shutting down and I didn’t know.

My body was shutting down and I didn’t know.

Your kidneys control everything in your body. They regulate water, so if [they] don’t work, water builds up in your body. I was pretty much drowning from the inside out. That swelling, the extra fatigue I was feeling was water around my heart, around my brain, in my lungs. If I’d never had lupus, I probably would’ve been like, "This is strange," when I first felt weird, but because no one ever has answers for what happens to your body when you have lupus, I had no idea. There’s no one common symptom.

At the hospital, doctors induced a coma. They got my brain swelling down and they immediately started me on dialysis. We found out the cause of [the failure] was partially lupus, but they’ll never be quite sure. At the time of my diagnosis, there was a lot of new scientific evidence of this gene called the APOL 1 gene that people of African descent may have or are more likely to have. I had that gene and that gene predisposes me to kidney disease or failure. It’s also possible this was exacerbated by lupus or lupus caused my kidney failure and was exacerbated by the APOL 1 gene. Either way, my type of kidney disease was very aggressive and difficult to treat.

What It's Like to Live With a Disease No One Believes Is Real: "I Was Drowning From the Inside Out" (3)

Courtesy of Ewo Harrell

I was in the hospital for three months [after being hospitalized]. To ensure remission, I had chemotherapy while I was in France. I felt amazing. I was on dialysis too [but] the goal, when I got back to the U.S., was to get a kidney transplant.

My brother, who had been living in Japan, moved back to America to donate, but it took me about eight months to get my paperwork done and more than a year to get [on the transplant list]. By then, my brother had gone back to Japan. Once I got listed, my sister wanted to donate. She’s my younger sister so I kind of ignored her, because I’m supposed to protect her, but behind the scenes, she went and got tested at her school. I had others — the then-head of Greek life at my alma mater and my best guy friend — who wanted to donate as well. But we just kind of had to wait.

What It's Like to Live With a Disease No One Believes Is Real: "I Was Drowning From the Inside Out" (4)

Courtesy of Ewo Harrell

I went to counseling so that I become OK with my sister donating. She was approved and we had the transplant on July 31, 2013. It was hard at first. When you have the transplant, it takes a long, long time to adjust and recover and get used to your medications. There is a three month-minimum monitoring period. After I was released from the hospital, I had to attend regular check-ups three times a week for the first month. After that, it went down to twice a week.

That’s why we look back and wonder if I always, as a child, had lupus. When I was 11 and then 13, I had severe allergic reactions to peaches and mangoes respectively. I had skin rashes and face-swelling very similar to the flares I had after my official diagnosis, which would’ve indicated I was immunocompromised. And I had always been kind of sluggish, and I had always complained about joint pains. But I don’t have those pains anymore. I get tired like a normal person, but I can think straight. The biggest thing for me is when I was on dialysis, I couldn’t walk a block without needing to rest. Now sometimes I’m walking around and I’m like, "Oh my god, I’m breathing normally!"

We’d found out two days before my transplant that my sister wasn’t a perfect match, so we had to make a family decision. My sister said she won’t regret giving me a kidney, so we went along with it, but the average living donor kidney lasts about 20 years. Because my sister wasn’t a perfect match, the average will probably be about 15 years. Again, it’s an average, so if I’m lucky, maybe 30 years. For the lifetime of the transplant I will have regular blood work to monitor kidney function and the levels of my medication, but hitting three years post-transplant is a big deal — the first three years are when there’s the highest risk of rejection so me getting to [this point] without having a rejection episode is amazing.

What It's Like to Live With a Disease No One Believes Is Real: "I Was Drowning From the Inside Out" (5)

Courtesy of Ewo Harrell

I want people to know that lupus is a real disease that can affect anyone and it affects all parts of your body. And so even though it’s invisible and your mother, brother, or friend may seem OK, they’re dealing with things they can’t even describe. Ask them how they’re doing. I’m tearful thinking about it because I can’t believe it’s been three years and that I’m living my life. I feel very lucky because there’s a lot of people who think it’s the end for them. I lost five years of my 20s, you know? But I’m killing it right now. My dreams are coming true.

Invisible Illnesses is a column featuring twentysomething women who suffer from chronic illnesses. They explain their conditions, how it affects their lives, and what they wish people who have no idea they are sick would know. If you would like to be interviewed about your experience with an invisible illness, email tkoman@hearst.com. Read previous installments of the column here.

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Tess KomanDigital DirectorTess Koman covers breaking (food) news, opinion pieces, and features on larger happenings in the food world.

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