Lupus is a Thief
Where did It go?
Ever walk into the garage to grab a tool only to find it missing? You know precisely where you left it but… nothing. That is what Lupus feels like.
You are going through your normal day when, suddenly, you realize you are unreasonably tired. Then you realize that the pain you have been ignoring is still there, even though it’s been weeks. No rhyme, no reason, just…BOOM…things are different.
At first, you adjust. More sleep. More caffeine. Maybe you lower your expectations just a touch. No biggie, we all get older, right? Except, you’re only in your 30’s.
Then the pain becomes harder to ignore, the fatigue comes quicker, and the questions press harder. Why are you so tired when it’s only noon? What is this pain that seems to travel around your body? Your left knee hurts but then is fine, but now your right forearm aches something fierce. A short time later your arm is doing ok, but now the other elbow is throbbing. On and on, as though there is a circus of pain touring your body.
Little by little, bit by bit, and year by year, it gets steadily worse.
You see doctors. If you are lucky, you get your answer in about two years, but for many it takes over three. In the meantime, your symptoms grow in number , strangeness and severity. You begin to question your sanity because things don’t make sense and your doctor, by now doctors plural, agree with that assessment. You’re confused, all your tests come back negative, and you feel like nobody believes you. All you know is that your vitality has been stolen, pain is everywhere, and, at times, you can’t even think straight.
Who is this guy?
As the years stumble by and the doctor visits mount, your confusion and fear permeate everything. The fatigue and pain take their toll in ways you fail to notice. Inevitably, it happens, and it comes as a total shock. Your boss calls you in and asks you to take a seat. You stroll in, totally confident in the knowledge that you are one of his best employees. A little while later, you wander out of the boss’s office with your head swimming. You have just learned that your fellow workers have been covering up your mistakes and cleaning up your messes. Customers have even been complaining about your work. At first, you are angry, but by the end of the conversation, you’re simply confused. When did you become such a sloppy worker?
You try to buckle down and pay more attention. You stop assuming you’ve gotten it right and, instead, prove your work at every step. This seems to do the trick… for a time. Soon, though, you find yourself back in front of your boss. He is concerned about you, but he has a business to run. You get one last chance. Eventually, maybe several years later, you are forced to accept that you can no longer perform your duties. You are humbled, you are confused, and you are devastated.
Years pass with you taking jobs that are less and less physically and mentally challenging. You feel smaller with each defeat. This weakling is not who you are. You are a man who enjoys 70-hour work weeks, loves the burn of well used muscles, and revels in conquering intricate problems and coming up with elegant solutions. You are a strong, smart and dedicated employee. No task is too difficult and no job is beneath your dignity. Yet, here you are, unable to force even a dozen hours of work out of yourself, no matter how simple the task.
Your home workshop is covered in dust and your last project is a dim memory. Your home is filled with half completed repairs and needs that are utterly ignored. You don’t clean until you have no choice and then, when you attempt to complete a chore, your body trembles from head to toe. More often than not, you perform the task poorly because you need to finish quickly or risk collapsing to the floor.
You no longer work at all yet can’t get disability, for you have nothing visual to show the judge. Your doctors agree you are suffering from something real but can’t agree on which disease is ruining your life. Judges really hate that. Consequently, you are simply left adrift. You contribute no money to the household, and you can barely manage to keep it from becoming worthy of being featured on Hoarders. You haven’t tossed a ball to your kid in years and it hurts too much to play with the dog. Hell, sometimes it hurts just to pet the dog.
Thief
Lupus steals everything. First, it takes your youth. Next, it breaks your faith in your own perceptions. Eventually, it runs off with your career and thwarts every attempt at replacing even a small portion of your lost income. Lupus’ greatest trick, however, is the way it robs you of your sense of self. The theft is so complete that most go through a period of mourning, though few understand it is happening.
You grieve for the man you once were, taken long before he would have been gently worn away by the natural progression of time. Lastly, and perhaps most cruelly, lupus takes the ability of those around you to hold onto their compassion.
Lupus, to your loved ones, is invisible and chaotic. It progresses too slowly for recognition as a condition yet can flare up so suddenly, it is difficult to accept as real. Family and friends will often drift away, thinking you are just being lazy, or selfish, or simply fabricating it all. Even those who believe everything about your suffering sometimes leave anyway, unable to watch you wither away over decades.
Lupus is the ultimate thief, stealing not only you, but often all the people in your life.
for more on my life with Lupus read The Choices We Must Make
