The Year I Was Diagnosed With Lupus

Doctor caring about patient

While my college and grad school friends tried to get pieces published and establish their careers, I played with my IV lines idly and watched the faces of the other women as they had mini consultations with our doctor.

I was 23, and a newly minted Master of Fine Arts, when I left my family in New York to join the Creation Care program at Camp Mokule’ia in Waialua, O’ahu, Hawai’i. Creation Care was an 11-month-long program, and one of a number of faith-based internships run by the Episcopal Service Corps. The program was everything I’d wanted, and though I was terrified to leave my family for such a long period of time, I tried to remain focused on the fact that I would be living in a tropical paradise for 48 weeks.

Within a month or two, I knew that something wasn’t right. I was having terrible nightmares, and I was shakier, both physically and emotionally, than I had been in some time. My boss, David, reassured me that it would all work out, and I drove white-knuckled to Waipahu to see one of the three general practitioners on O’ahu who accepted the insurance provided by Episcopal Service Corps to treat what I’d realized was wrong: my thyroid disease was worsening and needed to be medicated.

As it turns out, I knew this months before the blood tests could confirm it. The doctor in Waipahu had a theory that terrified me, and I made arrangements to fly home at Christmastime, because if I was going to get bad news, I wanted to get it from my doctor, whom I trusted with my life because he had saved it just a few years earlier.

I turned 24 in an airport in California. My flight home departed from Honolulu, stopped in Los Angeles and in Houston in the middle of the night, and then deposited me—sleep deprived, jet lagged, and cold shocked—in New York’s JFK airport. It was snowing. I showered, exfoliating my arms, hoping that the rash would go away with the layers of skin and airport grime that I felt covered me, then went out to dinner with my mother and sister for my birthday, and pretended that I was simply home for Christmas, and not for a medical tune up.

Two days later, I drove an hour to Glen Cove for an appointment, and the first round of blood work. Every two weeks, I’d go for results and more blood work, adding questions, but not answers, and eventually, I began seeing a second doctor, too. I had been fairly certain that the Waipahu doctor’s theory about me was wrong, but there was the chance that he was right. I was also fairly certain that I had lupus, but there was the chance that I was wrong.

After I was officially diagnosed with lupus, I walked down the hall for another blood draw. I was too numb to look at the blood requisition. The phlebotomist and I spoke as we always did, and she said that one of my tests cost over $1,000. I was stunned.

Which one? I asked.

The leukemia test.

Two weeks later, the test came back on the negative side of borderline, and my treatment plan was laid out. Two IVs each week, with what felt at the time like an impressive cocktail of supplements. The inflammation in my bone marrow was critical and needed to be brought down immediately, and my three autoimmune diseases needed to be coaxed into remission.

Each Tuesday and Thursday from February to July, I would wake up, walk to the train station to retrieve my car, which my mother and I were sharing, and drive to Glen Cove. The drive was about an hour, plus traffic, and predictably, the Long Island Expressway did little to help my stress level. As my IV lines infiltrated and had to be removed and then re-placed, and my veins failed to produce blood returns, and as the commutes became worse and worse, I told myself that it was only for 12 weeks, but at 12 weeks, the numbers representing inflammation and auto antibodies had failed to meet their targets, and 12 weeks grew, eventually, into 22.

I brought my computer, and learned to sit near an outlet so that I could watch Netflix and sit on a heating pad with amethyst crystals inside for healing. I watched “Pokémon,” “House,” “Glee,” and whatever else would hold my interest during the five-hour infusions. Gradually, I made friends with the other women in treatment, and we brought each other water and blankets on our many trips to the bathrooms and water coolers. I tangled and untangled my IV lines each time I sat down or stood up, and the art of the IV pole became second nature.

I resigned from my internship in Hawai’i, and wondered how it was possible that two months earlier, I had worked on a farm with livestock in 90-degree weather and seemed mostly healthy. For a while, I was the only person in treatment who didn’t have cancer, though it was an unspoken rule that we didn’t talk about our diagnoses. I was 20 years younger than the next youngest woman, and while my college and grad school friends tried to get pieces published and establish their careers, I played with my IV lines idly and watched the faces of the other women as they had mini consultations with our doctor.

My church family was incredible during this period. We didn’t know how we would get through the emotional and financial trauma, and each week, members of our church would hug us and tell us that they were praying for us. Our friends Bradley and Jo-Mari organized a benefit concert for my treatment fund, even though they were expecting their first child.

On the way home from treatment, I would detour to visit Chipotle, which was the only thing that would settle my stomach. My nausea from my own IVs was compounded by the smell of the drugs received by my treatment companions. Sometimes, Rosemarie would bring in cappuccinos and we would pretend that life was normal while she told me about her family and her dogs, which she showed in competitions. I told her that I was working on a memoir about chronic illness that I couldn’t complete due to my symptoms. We talked about our churches, and I said that I’d alternated watching the BBC/Wonderworks and the Disney/Walden Media adaptations of “The Chronicles of Narnia” for a solid month, but at the moment, that was the extent of my current religious practice. I couldn’t find God in disease and IV lines. Rosemarie would pray over my veins when our very skilled nurses, Ashlee and Annie, couldn’t get an IV line in because my veins were too traumatized to accept another infusion, and there was always a successful stick immediately thereafter.

My IV access points still hurt, more than nine months later, due to the scar tissue on my veins. Recently, on a beautiful spring day following another terrible winter in the midst of another trying year, I sat behind someone whose body emanated the drug that the treatment room always smelled of, and spent the rest of the day trying not to vomit.

During my months of testing, and 22 weeks of treatment, two couples I know announced pregnancies, and a third had the baby she’d been pregnant with when I was in Hawai’i. I was quickly losing faith that I would ever incubate life instead of disease, and I was desperately envious of their little families as 150 grams of Vitamin C dripped into my veins each week.

I got out of treatment shortly after I would have arrived home from my year in Hawai’i. A new team is beginning to wrap up their year in the program, and in my dreams of Hawai’i, it is still my team that serves there: my mind unable to resolve the year and the passage of another because my departure remains so fraught, abrupt, and unresolved.

I will never be the person I was before this, and honestly, I don’t know who I will be as my symptoms continue to ease. I took a leap of faith and adopted an abandoned dog just before my birthday, and her adoption was the redemption of my 25th year. She kisses me, steals my blankets, and hates it when I cry. I gave her a Hawaiian middle name when I adopted her, and her name means “gift of life,” which is exactly what we have given each other.

Anjelica Whitehorne holds a B.A. in Environmental Humanities from Stony Brook University and an M.F.A. in Creative Writing and Literature from Stony Brook Southampton. Anjelica—who thought that being Queen of Narnia fell under the purview of her mother’s, “You can be anything you want when you grow up”—is privileged to love five of the best rescue animals in the world in her home on Long Island, where she makes prayer beads and rosaries when she isn’t writing, and awaits the day when all animals have loving homes and autoimmunity is cured.

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