The Invisible Illness
If a human body has two-hundred-and-six bones
and thirty trillion cells, and each cell
has one hundred trillion atoms, if the spine
has thirty-three vertebrae —
if each atom
has a shadow — then the lilacs across the yard
are nebulae beginning to star.
- “Combustion” by Sara Eliza Johnson
“But you don’t look sick.” Apparently this is the protest that many Lupus patients get from the general public in observance of how they feel on any given day. I have never knowingly met (another) Lupus patient, so I cannot say if this accusation is true. I can say that Systemic Lupus Erythematosus, the variety of Lupus I sport, is probably one of the lesser understood autoimmune diseases. According to the (Help Us Solve the Cruel Mystery) Lupus Foundation of America, the mid-eighteen hundreds is the first time a comprehensive description of Lupus was arranged and it was not until 1948 that the LE cell was discovered.
It is a relatively new disease in terms of research and diagnosis.
If you were to search “Lupus” online, your computer screen would produce an outpouring of sites offering descriptions of the disease and its medical symptoms. What you have to dig for, of course, is the reality of the disease.
As any patient with an autoimmune disease can tell you, the experience of living with a disease is never quite what the medical explanations illustrate. Confusingly, even the many search results that flash on screen aren’t comprehensive. “Chronic,” “inflammation,” and “immune system” are the links found in any given source, but there is an inconsistency in detailing effects and symptoms.
Essentially, Lupus is an autoimmune disease that can affect any part of the body — and it does not go away. It means that the body’s white blood cells misidentify healthy cells for diseased cells and attack them, causing damage to the organs they are trying to save. It means your body is its own worst enemy until it dies. Blogger Christina Gorgon expresses her relationship with her body this way, “If you cannot trust your own body, how are you supposed to trust anything else?”
Part of the problem with conveying what Lupus is to other people — and even with diagnosing it — is that it can affect any part of the body. The origin of the word “lupus” is from Medieval Latin for wolf, said to be named so because of the way it “devours” the affected part.
Consequently, symptoms have enormous range and can be easily mistaken for other medical ailments. Many people spend years in doctors’ offices or emergency rooms cataloguing a “multitude of mysterious symptoms” before they begin to get answers.
For two years, every school holiday I could make the flight home to Colorado from my liberal arts college in rural Pennsylvania, I had a scheduled appointment with my doctor. I had likely been experiencing minor symptoms for close to two and a half years, but it took a week-plus long episode just before Easter of my junior year with me sleeping up to 16 hours a day, unable to concentrate on reading a textbook or carry a conversation, freezing so badly that I slept in layers of sweats and gloves, and absolute emotional collapses resulting in tears several times a day to put my health on urgent status. I told my mom it felt like I had mono paired with a concussion, only you can be symptomatic with mono just one time (which I had) and I hadn’t been pursuing athletics or any other means to suffer concussions in a while. (I would know later that I’d been experiencing a “flare up.”) Having history of low vitamin D and iron levels prompted doctors to tell me (overworked college student) to rest more, reduce stress, and exercise, until a physician’s assistant in my doctor’s office had the presence of mind to check one extra test on my blood screening at the last minute.
A few more tests and I was welcomed to the community of those with “hyperactive” and mutinous immune systems.
According to research gathered by blogger, Amber of Lupine Life, “Lupus affects more people than sickle-cell anemia, cerebral palsy, multiple sclerosis, and cystic fibrosis COMBINED.”
Yet much of America is still largely unaware of what Lupus is.
I knew nothing about Lupus when I was diagnosed in 2013. I was so relieved to have validation for feeling so ill, while looking so well, that I didn’t really care. I now knew I had a medically recognized ailment to verify that I was struggling (and not just a wimp), and now could focus on finishing school rather than justifying myself to my peers.
It wasn’t until months later that I recognized the seriousness of what had just altered my life for good. I was months behind my parents who developed chest-tightening worry as soon as the word “disease” came back positive. I was protected from the reality of my new normal just long enough to collapse home, barely scraping by my last semester in Pennsylvania before transferring, finishing classes at home during the summer at the mercy of caring professors.
Molly’s Fund, a nonprofit foundation educating, advocating, collaborating, and supporting within the world of Lupus, and changing the way people understand the disease, characterizes fatigue associated with systemic Lupus:
Symptoms such as fatigue and pain can limit the level of activity you are now able to sustain. This may cause difficulty with keeping up your normal pace at work and affect the ability to enjoy or participate in your free-time activities as well. These limitations can cause stress, depression, and potentially new financial burdens due to the need to cut back at work or even leave your job [or school] entirely.
It goes on to illustrate “brain fog” (cognitive dysfunction):
Many with a brain fog complain of having difficulty following directions, concentrating when they read, and trouble learning new tasks or absorbing information. They also report not having the ability to successfully multi-task, having problems focusing on more than one thing at a time. The lack of ability to concentrate or pay attention can be a difficult symptom to deal with for anyone, but can be devastating to a student, or to someone in a professional setting…Reaction times may be slower, causing lags in conversation as the sufferer works to register and understand the information that is being shared. This also manifests in the inability to problem solve, plan, organize, and think critically. These skills that many take for granted can be very challenging for someone in a lupus fog. Simple tasks like planning for and preparing a meal can overwhelm someone with this type of condition. The sufferer may appear less intelligent, capable, or credible, thereby negatively affecting family, school, work, and community relationships.
Attending an institution offered Ivy League status (but rejected it)? Diagnosed with Lupus? I was struggling. That puts it lightly. Lupus had manifested its harmful organ-attacking effects on my brain. I had no liver failure sending me to the hospital, no butterfly rash on my face (generally associated with the disease), and no one standing beside me explaining my Lupus for me as I wrestled to hold onto complete sentences before they evaporated. I was misunderstood by everyone who looked at me. (“But you don’t look sick.”) The closest things I had to visible symptoms were hair loss (handfuls in the shower) and poor circulation resulting in icy cold extremities. The photosensitivity was exaggerated for my normal redhead sun-fearing self, as was the bruising, but no one suspected foul play.
So how does one explain the frustration and adversity of living with Lupus every day for the rest of a mortal life? Not the overzealous white blood cells or the LE cells, but as Molly and other bloggers pursue, a new understanding of Lupus?
The Spoon Theory was born when Lupus patient, Christine Miserandino, was out to dinner with her best friend and former college roommate. After watching Miserandino pull out and take medication with her meal, her friend asked what it felt like to have Lupus and be sick. After a moment of floundering for a way to accurately relay what she felt, Miserandino grabbed 12 spoons from the empty tables around them, handed them to her friend, and said, “Here you go; you have Lupus.” She explained that when you are healthy, you expect to have a never ending supply of spoons at your disposal, but when you are sick, there is a limited supply and you must always be conscious of how many spoons you have. Miserandino asked her friend to go through her normal day, listing even the simplest of tasks. Immediately when she began with “getting ready for work” as her first task, Miserandino stopped her:
No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.
Before even getting to work, 6 of the 12 spoons were gone. And when you are out of spoons, that’s it. You might be able to borrow one from tomorrow, but then you are one short beginning the next day. “The difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.”
This means sacrificing, making decisions, learning to slow down and not do everything. It’s hard to feel left out when you need to stay home or to not get things done that you want to. Having Lupus means not having the freedom to not think in terms of “how many spoons.”
Women make up ninety percent of Lupus patients.
Most first develop signs between ages 15 and 44. Most are ethnic. I am a white woman who was diagnosed at 21. I don’t have a genetic history of autoimmune diseases that my family is aware of. But once you are diagnosed with one autoimmune disease, your chances are much higher of discovering you have other related diseases, too. I cannot eat gluten. I am borderline anemic. I don’t donate blood, I don’t get flu shots, and I don’t talk about it. I don’t know why I have Lupus. I don’t really know how my antimalarial drugs ward off flare ups most of the time. I don’t know why they don’t ward them off all of the time.
I do know that it is hard being sick. It’s not just hard on the body, but hard on the psyche. It’s hard having a body you cannot trust and friends who don’t understand you. Lupus is known as the “Invisible Illness” because it is hard — hard to describe and hard to diagnose. (Its even hard to socially accept the complaining of historically misunderstood women — Lupus is a woman’s disease after all.)
After reading blogs of other women though, I’ve learned that I’m not the only one who finds the forced “slowdown lifestyle” can be a blessing. Having limited spoons teaches you to be more intentional. Friends you make time for become more dear. Being of the “devoured” tribe reminds me that there are things that last and are stronger than the physical. How beautifully important people are. How special it is to have relationships that are refined and strengthened. Relationships, like Lupus, are hard, and made harder with each layer of the other person that is delved into. When you have friends and family who quit trying to understand (because you hardly understand yourself) and begin to try to be understanding, a new level of commitment and love is realized. What’s more, compassion grows in you for people whose situations you may not fully be able to see or understand. The horrid clerk at the checkout line becomes worthy of tenderness, the dirty person pushing belongings along the road is worth asking a name of, and your brother so deserves a hug when he comes over because who knows if a single person validated his existence today?
Awareness is what I have inherited alongside my devoted and misled warrior-cells. My wolf came with good intentions of protection, but instead brought a more acute ability to measure my life by people instead of by goals. The wolf released me of my servanthood to the clock and strengthened my bonds with flesh (if not my own). And finally, if I do have to be sick, at least I look good doing it.
“What Is the History of Lupus?” Lupus Foundation of America. 15 July 2013. Web. 19 Nov. 2014.
Gorgon, Christina. “UNDEFEATED DIVA.” UNDEFEATED DIVA. Web. 21 Nov. 2014.
“Lupus.” Dictionary.com. Dictionary.com. Web. 19 Nov. 2014.
“Lupine Life.” Lupinelifedotcom. Web. 20 Nov. 2014.
Lupine via Lupus Foundation.
Sundbom, Karrie. “Living With Lupus: In What Ways Can Lupus Affect the Body?” Mollys Fund. Web. 21 Nov. 2014.
Miserandino, Christine. “The Spoon Theory.” But You Dont Look Sick Support for Those with Invisible Illness or Chronic Illness. 2010. Web. 21 Nov. 2014.
Lupus Foundation. “Lupus In-Depth Report.” The New York Times. A.D.A.M. 2008. Web. 21 Nov. 2014.