When most people hear the word “lupus”, they quote “Dr. House” at me. “It’s never lupus!” they laugh. While this lame attempt at humor can be funny (doctors really never think it is lupus), most people then realize they know nothing of this disease that’s taken over my life. It’s not their fault. Lupus isn’t a disease that dramatically claims victims’ lives suddenly and painfully, rather it creeps in slowly and quietly, taking with it mostly young women, and minority women at that.
According to the Lupus Foundation of America, lupus affects around 1.5 million Americans, and approximately 5 million people around the world. It strikes mostly women in the childbearing years (18-44), although men, teenagers and children can develop it as well. It is characterized by flares and remissions in which the body continually attacks itself. Every case is different, but most people with lupus suffer from swollen lymph nodes, low-grade fevers, painful arthritis, rashes, anemia, extreme fatigue (akin to exhaustion), hair loss, mouth and nose ulcers, sun-sensitivity, swelling of the joints, pain in the chest upon breathing and a butterfly-shaped rash across the bridge of the nose. In severe cases, the organs can be attacked and compromised, leading to organ failure and eventual death.
My lupus developed as mysteriously as the disease itself, sort of like a bandit that came in during the night that left with my health. Previously, I had led an active life of a 20-year-old college coed. I was involved in theater, a member of a sorority, led a full social life, had a full-load of classes and a boyfriend who, at the time, I adored. I went from being 20 to 80 overnight. During Christmas break of 2005 I slept, sometimes for days at a time. I suffered from recurring UTIs, some so severe that the antibiotics I took wouldn’t keep them at bay. My boyfriend, having no idea what had happened to the vibrant person I was, left me for someone else, claiming I had become too lazy and too boring. Devastated, I cried for days, but tried to return to school and my life. Depressed about my now ex, I spent days in bed crying, mistaking my sleepiness for heartbreak. I could no longer get out of bed. My body was ravaged with bladder and kidney infection after bladder and kidney infection. I tried to “perk up”, to join sorority functions and go out with my friends, but I always ended up back in my dorm room, or sometimes I’d even end up back in the hospital receiving IV fluids for yet another UTI.
After returning home that semester at spring break, unable to cope with the intense UTIs that constantly plagued my body, I finally got a diagnosis that I would live with for several years: chronic fatigue and immune dysfunction syndrome, or CFIDS. For the next three years I would float from doctor to doctor trying to identify this “thing” that had robbed me of my life. I was tired. Constantly ill. Somehow, I still managed to graduate from college, study abroad (I lived with a French host family who whispered to one another about my how sickly I always seemed to be, constantly needing help translating medication instructions for remedies I’d received for yet another viral infection or UTI) and begin attending graduate school in New York City. But this “thing” followed me. Some days I was able to function, some days I wasn’t. Specialists in New York gave me every diagnosis from Lyme disease to depression to fibromyalgia to severe vitamin deficiencies. Convinced it would help, I even saw a Chronic Fatigue “Specialist” who ended up giving me vitamins and shots developed by him and over billing my father’s insurance.
I fell into a new relationship with someone else, and developed new symptoms, mainly in the form of rashes and arthritis. I continued school, but this thing constantly bothered me. My real friends new all about “Anna’s weird health thing”, but the disease acted as a constant crucible, in college especially, separating people who would get too annoyed to deal with my illness with people who loved me enough to deal with me in spite of it. But the looming fear of my ex breaking things off suddenly weighed on this new relationship, even though he was understanding about the illness, but my insecurities partly lead to its demise. If he could have his pick of healthy 20 something’s in NYC, why pick me, this girl who had suddenly developed swelling and pain in her knees and elbows, this girl who iced her knees at night, who sometimes slept for days at a time or was in so much pain that she sometimes shirked at his touch? Or someone who couldn’t consume massive amounts of alcohol like everyone else our age because it made me ill?
During a routine visit to the doctor, I brought up the weird rashes, the arthritis, the pain. Something indicative of lupus showed up on a routine blood test and the doctor ran it again and concluded I didn’t have it. Lupus, at the time, seemed foreign and unfamiliar. The only reason I had ever heard the word was because my grandfather developed medicine-induced lupus later in life. I had no idea what it meant. But the more research I did, the more certain I was I had it. Put I pressed on. Doctor after doctor told me it was fibromyalgia, a diet problem, a fluke or tested only my ANA. Finally, after an enough is enough attitude, I went to a rheumatologist affiliated with my graduate school. She happened to take blood on a day I had all of the symptoms: swollen knees, butterfly rash, low-grade fever, and indescribable fatigue. And finally, I had a name for it, this mysterious thing roaming through my body and blood tests to prove it. I wasn’t crazy. I didn’t have some vitamin deficiency or something mysterious. I had lupus.
Putting a name to it made me think I would finally be cured somehow. Medications help tame the symptoms, but they didn’t cure it. But I refuse to be slowed down by the disease. I still date, but I tell men upfront about the lupus so they’ll know what they’re dealing with. My mother thinks it’s a bad idea, but I’d rather they know upfront than fall in love with someone who can’t handle it. I moved to Hungary to teach English while fighting lupus, and I lasted four and a half months. I’ve never been able to hold down a full-time job for very long, but as such, lupus has given me the courage to do what I want: write full time and freelance for theater companies and education organizations. Without lupus, I wouldn’t have known exactly who loves me (and all of me) and I wouldn’t have had the courage to give up the 9 to 5 drudgery, which I’m positive I would have hated without lupus, for freelancing. There is always a silver lining.
by Anna Scanlon
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