As anyone whose life was struck with a sudden, debilitating and permanent illness can attest, there are several stages of coming to terms with life-altering implications of one’s disease. More often than not, its initial onset stirs a period of absolute confusion and a profound sense of aloneness. What is going on with my body? Why was I fine one day and flattened the next? Why is this persisting? When will the pain stop? Why is the world passing me by outside my window while all I can do is lay on the couch? Why doesn’t anyone understand what I’m going through?
The day I went from standing to sitting is emblazoned in my mind. I’ll bet, if I ask my tens of thousands of online lupus friends if they, too, remember that time in their lives, how their whole world changed, or if doctors couldn’t solve the mystery of their illness, the majority of them would answer with a resounding “Yes! That totally happened to me!” We have so much in common. But this, I’ll get to later.
It was the day before Easter, 2010. A typical Saturday at the salon. Busy. Until that day, I’d never needed to sit down to cut hair, but for some reason I had to give in to our rolling black saddle style stool. Even as I sat, and crafted a perfect bob, I was uncharacteristically out of breath. Over the years, clients often asked me, “Don’t your hands get tired?” or “Doesn’t that hurt your back, bending over the shampoo bowl?” or “Wow, you must be exhausted standing on your feet all day.” It’s bizarre to think about now how all of my answers to these questions were a casual “No, my hands never hurt, my back is strong and I actually feel energized by working all day doing hair and socializing with you!” Of all the things that I lost after lupus – my career, my strong indefatigable body, some relationships – perhaps most devastating for me was the social part. Lupus left me with a loneliness that ached more profoundly than any that ever plagued my body. Thank God, then, for Facebook. But, I’ll get to that later.
Every night I would cry myself to sleep, if I could sleep at all. I’d been released from a two-week near-death hospital stay to a second story apartment, where I’d slowly scooted up the staircase on my butt. My ailments had been the weirdest, mystifying, seemingly disconnected conglomerate of issues that the doctors, after having run every test under the sun, simply scratched their heads and sent me home. I’d been short of breath when I stood. My heart pounded when I walked a few feet. My lower rib cage felt like someone had lit a fire under it.
On the third day, when the doctors at the teaching hospital all stood around my bed and asked me to “draw on this human diagram where it hurts”, I’d drawn exactly that. A ring of flames around where my organs seemed to be pushing up into my ribs. They looked at me politely, trying not to belie their suspicion that I might just be making it up. My explanation that the quality of pain could best be described by the word “charbroiled” only added to the mounting disbelief I could see on their skeptical faces.
Despite feeling like I was on death’s door, my only tangibles were a wet cough that turned out to grow a type of psuedomonas pneumonia. Blood tests were relatively normal, except for extremely high monocytes and a positive ANA, which I was told was a “false positive” and, as for the monocytes, they just showed I’d had a “previous” mono in high school. The reason my organs felt bigger than their allotted torso space was just that. A CT scan showed my liver and spleen were enlarged.
Yet, despite the fact that my blood pressure shot up more than 70 points on a walk to the bathroom, where a pool of blood came gushing out when I sat on the toilet and I didn’t have my period, a white light had lifted me that night a few feet above my hospital bed, where I blissfully floated toward it, and my organs were too big for my body, they sent me home. Something was seriously, seriously wrong. But all the king’s horses and all the king’s men couldn’t… Wait! They found the answer! I thought. Right before they were to discharge me on the last day, a nice young man (one of the many interns or residents? I couldn’t tell which) came to the foot of my bed and announced:
“We found something wrong. Your spleen is enlarged. We can’t let you go.”
He scuttled away. Returning a half hour later, he says, “You are free to go home.”
“What?” I asked incredulously. I’d almost died the night before, a fact I withheld for fear of being sent to the psychiatric ward. The “charbroiled” ring of fire was bad enough for my credibility. I didn’t dare go into revealing the white light. An experience I’ve since found has happened to many of my lupus sisters and brothers.
“But I feel like something is terribly wrong. What about my spleen?”
“What do you mean?” he replied.
“You just told me my spleen was enlarged. What does that mean?”
He shrugged, “I don’t know. I don’t specialize in spleens.”
This, my friends, is what is wrong with modern medicine. Increasingly, med students are becoming so specialized that their tunnel vision precludes from seeing the bigger picture. More lupus patients would get diagnosed if more doctors could put two and two together.
Speaking of twos, this leads me to my point. It is now 2017. I have seven years under my belt of not only understanding the ins and outs of my own lupus, but I’ve had the great fortune to join Facebook support groups over the years. And what I’ve learned is profound.
Much of the literature one will find about lupus makes claim that “no two lupus patients are alike.” That each lupus patient is so incredibly “unique.” And, as the saying goes among the very limited medical and research community that couldn’t give two s**ts about the disease, “If you’ve met one person with lupus, you’ve met one person with lupus.”
I am here to claim that this oversimplification is simply not true. Not only is it wrong, but using language like this does a disservice to our lupus community and harms the very future of its research. What kind of scientist is going to go through all the trouble and money and time to do a study on one individual?
We are not unique. I know this because I know people with lupus. Unlike seven years ago, I know tens of thousands of people with lupus. By posting my own, and reading others’ questions about certain ailments or “co-morbidities” in our online support group, I discovered we have so much in common. From a psychological standpoint alone, we all endure similar stages of emotions and life disruptions that having a debilitating illness brings to the surface. We often lose our ability to do our jobs, participate in sports, attend family events, go out in the sun, even do simple household chores like cleaning or making dinner. With the “mystery” surrounding lupus in particular, we are often mistreated, misdiagnosed and misbelieved by doctors for years. Because of this, and because of our having to cancel plans when we are fatigued, family members and friends can become frustrated with us. Some of them even doubt our credibility. Like all “invisible illnesses” we even look fine. So why are we laying on the couch instead of going to a friend’s baby shower, or even doing the dishes?
This is where connecting with others going through the same thing can be a lifesaver. Over years of participating in Facebook lupus support groups, we find that not only are we not alone in these circumstances, but that medically we are a lot alike.
This is important. Instead of focusing on our differences, only fostering the shroud of “mystery” perplexing not only doctors who treat lupus patients, but doctors who fail to diagnose a disease that actually presents with very telltale signs, we need to look for commonalities. Diagnosis would come more swiftly. Research would seem more appealing. Lupus would not be such a mystery if doctors would just recognize some of the common signs.
If only doctors knew which signs to look for.
Here are a few I’ve compiled from my own experiences and talking to people with lupus which could be crucial for doctors and researchers alike:
– 90 percent of us are women between the ages of 15 to 44 at onset. I know. I know. This is a no-brainer. But why is there not more research about how hormones affect, maybe even cause, lupus? The fact that it happens to young women also misleads doctors to shrug it off.
“You are too young to be this sick,” they observe. “Plus you look very healthy. I wouldn’t worry about it.”
– Lupus does strike men. Doctors need to know this, because often this is one of the most undiagnosed factions of our community.
– Of the lupus patients who are women, many of us find our disease tends to flare around our menstrual cycle. Again. Hormones? Research?
– Butterfly rash. People with SLE may not get a raised, clearly defined butterfly rash, but a slight flush. Like we applied blush poorly in the dark. My mom kept asking the doctors, “Why does my daughter look like she’s sunburned? She doesn’t normally have red skin.” The more rosy my cheeks, the sicker I got. But doctors just looked at my flushed cheeks and saw a healthy glow. More doctors need to recognize that this could be a sign of lupus.
This is like Family Feud! A game we used to play late at night in one of our Facebook groups to add levity and distractions for those struggling with insomnia. Yet another thing many of us have found we have in common.
100 people’s survey, top 10 answers on the board. Survey says:
– Blood pressure issues. From my personal “surveys” I’d say around 70 percent of people with lupus either have high blood pressure, low blood pressure or wildly fluctuating blood pressure. I personally was diagnosed with postural orthostatic tachycardia syndrome (POTS), after being not believed for a few years. But not many doctors are willing to admit to its correlation to lupus. Yet I have met thousands of folks with lupus who have the latter or some variation of the former. What is the connection between lupus and blood pressure?
– Cardiovascular issues. This goes with blood pressure, but also includes vasculitis, phlebitis, tachycardia, Raynaud’s and the biggest one, pericarditis. How does lupus affect the veins? The circulatory system? The heart? If you are a person with lupus reading this and have been affected, raise your hands! I can guarantee there are a lot of hands going up right now. We desperately need studies on lupus and the cardiovascular system. Low platelets? Antiphospholipid syndrome?
– Infections. Many people with lupus get infections. Infections are one of the leading causes of death for people with lupus. Literature will even say this. Yet why, when so many people with lupus die from heart attacks, kidney failure or infection, do we still say, “Each lupus patient is so vastly different from the next.” ?
I almost died from infections. Lung infections. Another commonality, while we’re at it. Lungs. Lupus causes pleuritis, scarring and other lung complications. Not to mention recurring pneumonias. Which goes with infections.
Before I knew a soul with lupus, I thought I was so unique. I always got repeated pneumonias. Then, after its onset, I got more complex, hard-to-treat infections whose names I can’t pronounce. Like psuedomonas aeruginosa or stenotrophomonas maltophilia or the worst, aspergillosis. I thought I was alone in this. In fact, I didn’t even know if it was related to lupus. Is it? We need a study.
My “studies” of talking with other people who have lupus indicate that it is.
Here is an example of how I stumbled upon my “research” which led me to conclude we were medically more alike than different.
“Hey guys, just checking in. I’m struggling in the hospital right now with a rare pneumonia. I’m asking for prayers.”
“Oh sorry to hear. Sending prayers and gentle hugs.”
Praying hands emoji.
“Awe. I know how you feel. I get pneumonia a lot.”
“Me too! Upper respiratory infections all the time. Sorry you are in the hospital. That sucks. Been there. Prayers up.”
Purple heart emoji.
“Ugh. I really feel your pain. I get lung infections three or four times a year. No fun. Stay strong Sistah!”
Praying hand emoji. Purple heart emoji.
“I hope the doctors are treating you right! I just got out of the hospital last week! XO”
OK, OK, so this isn’t exactly scientific. And I can hear the medical community powers that be scoffing, “Well. We’ve found it very hard to study lupus patients, because they don’t have the same presentation as the next person.”
I’ll concede. We may not be exactly alike. But let’s look at concentric circles:
I may have lung involvement, neuropathy, Raynaud’s, POTS, phlebitis, hearing loss, photosensitivity, frequent infections, fatigue, joint pain, lupus “fog” and menstrual flares, while my fellow lupus warrior in Nebraska may present with kidney involvement, photosensitivity, blood pressure problems, low platelets, neuropathy, fatigue, joint pain and hair loss.
My friend in Maryland has antiphospholipid syndrome, sun tolerance, hair loss, lupus “fog,” history of stroke, POTS, menstrual flares, fatigue and joint pain.
Another friend in California has kidney involvement, sun tolerance, hair loss, low platelets, frequent infections, Raynaud’s, menstrual flares, fatigue and joint pain.
Yet another friend in Louisiana has lung involvement, frequent infections, low blood pressure, photosensitivity, hearing loss, neuropathy, lupus “fog,” menstrual flares, fatigue and joint pain.
My friend in Illinois struggles with CNS involvement, pericarditis, hair loss, photosensitivity, Raynaud’s, vasculitis, lupus “fog,” neuropathy, menstrual flares, fatigue and joint pain.
See any commonalities? I would venture to say that there is not a single person with lupus who does not present with at least three of the above listed ailments. We shouldn’t even call them ailments. We should call them “common signs and symptoms” of lupus.
It’s crucial for us to re-think the language we use to define lupus. It is not possible for each of the 1.5 million Americans and potentially five million people worldwide with lupus to have a completely unique disease from the next. Perpetuating this myth not only isolates lupus patients themselves, but allows doctors to miss telltale signs. Signs that should be taught in medical school. I can tell you a huge thing us lupies have in common is that we will often meet nurses or doctors who don’t know anything at all about lupus. Not learning about it in medical or nursing school is a travesty.
And for the outstanding organizations and advocates who work tirelessly to lobby funding for research, they, too, need all the tools they can get to convince a researcher why a study on lupus and the cardiovascular system, or lupus and the lungs, or lupus and low immunoglobulins, or lupus and hormones would be worth their while.
As an advocate myself, I came back from death’s door. And that is why I fight. I fight for others. My fellow butterfly sisters and brothers. The person who is alone in the hospital. Alone with their weird set of ailments, made only more alienated by nurses and doctors just not getting it.
I have many wishes as a lupus advocate. Many changes, and advancements, and studies, and medicines, and a cure to be found. Those all take action and lot of resources. But let’s start with something that is free and only takes the typing of fingers on a keyboard or the words out of our mouths.
“Though each lupus patient may have her or his own combination of issues, all of those presentations ultimately overlap with another’s.”
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Thinkstock photo via Krimzoya.