As I lay awake last night waiting for my usual cocktail of medications to take effect, I tried to think of some way of expressing how I was feeling. And then I suddenly realized that it could all be summed up in two words: “Lupus sucks.” I’m certainly not the first to come to this conclusion, but I feel that it needs to be reiterated from time to time. Lupus changes every aspect of a patient’s life, and it’s often hard for healthy people to understand why the impact is so huge. In an effort to explain lupus from a patient’s perspective, I’ve come up with a few of the ways by which Lupus totally disrupts a patient’s life.
Having lupus means that you are suddenly not in control of your life, future, or physical abilities. You were an athlete who worked out two or three hours a day? Well, too bad. Now you’re going to struggle to walk with knees and ankles that are painfully inflamed. You think that because you’re in your 20’s and eat a healthy diet you don’t have to worry about heart problems for, oh, another forty or fifty years? Well guess what… the chronic inflammation caused by lupus can and does make it so that 20-somethings end up needing quadruple bypass surgery. You’re proud of your memory and ability to communicate? Good luck with that when the dreaded brain fog hits. To a large extent, lupus dictates your limitations. Lupus sucks.
Having lupus also means that your physical appearance can be dramatically altered… and again, these alterations are largely beyond your control. Just to start with, a very common symptom of lupus is hair loss. Going partially bald at twenty is no fun for members of either gender. Also, many lupus patients get bright red rashes on their face, arms and legs that cannot be hidden by any amount of makeup. Are you happy with your weight and muscle tone? Well, now that you have lupus, the chances of your being able to continue to maintain that weight and tone are slim (no pun intended). Maybe you’ll be put on corticosteroids, which make you retain water and gain enormous amounts of weight. And then the doctor who prescribed the steroid will tell you to lose weight. Or maybe you’ll be put on chemotherapy instead, and you’ll start dropping weight because you’re too nauseous to eat. This won’t be sexy weight loss, it’ll be the kind that causes people to stare at you and say some variation of, “Wow, you look sick.” As for muscle tone, well, leaving aside the fact that your joints are probably so swollen and painful that exercise is damn near impossible, you may find that your immune system directly attacks and destroys your muscle tissue. Oh, and that beautiful tan you had? Forget about it. Any tan in the future will have to come from a bottle, because spending time in the sun will now cause your disease to flare up dangerously.
Lupus hurts. It hurts a lot. Most of us try not to dwell on this, as nobody likes a whiner. But the fact is, lupus is incredibly painful. Have you ever sprained an ankle, or strained a muscle? Think back to how much that hurt. Now imagine that type of pain in every joint in your body (don’t forget the toes!). Then add stabbing pains from inflamed ribs or lungs, the aches and pains that come when you have a fever for months at a time, a mouth so full of sores that it feels like you’ve been chewing on steel wool, and top it all off with a headache that won’t respond to normal painkillers. Remember that all this pain will last until either your medications bring it under control or your disease goes into remission. Congratulations… now you have an idea of what it feels like to have lupus.
Lupus is expensive. For lupus patients living in countries without socialized medicine, the medical costs of treating lupus can be overwhelming. Our medical bills can easily take up at least 10-20% of our net income. Private insurance is not an option; no company will insure someone with lupus unless they are forced to do so. [This is scheduled to change in the U.S. in 2014, assuming that the health care bill isn’t destroyed between now and then.] So those of us who are lucky can only receive insurance through school or work group insurance policies; everyone else is pretty much screwed. And that’s not bringing up the issues of caps on coverage, or the challenges of claiming disability for those who are totally incapacitated by their disease, etc. Stress from financial anxieties, of course, make lupus flares more likely to occur, causing a vicious and seemingly inescapable circle.
Lupus sucks. It really does. This is not to say that there are not positive aspects, though. I’ve found that chronic illness can bring out the best in people around the chronically ill patient. You really learn who your true friends are, and you learn to appreciate them beyond almost anything else in your life. Many lupus patients’ partners are shown as the wonderful men and women they are as they struggle to understand and support their partners in their illnesses. Sometimes the unexpected kindness of strangers is overwhelming; you find people who will go totally out of their way to help you when they see that you are struggling. Lupus also gives you an appreciation for the good days. If and when the disease does go into remission, lupus patients will pack all the living they can into those moments of relative health. Being in pain for months or years at a time teaches you to appreciate the absence of pain more than a healthy person can ever begin to understand. All of these positives are things that I try to focus on. I am totally aware that it’s unhealthy to focus on the negatives, and I try not to do so. But every now and then, as I lie in my bed trying desperately to catch a few hours of sleep, I have to admit to myself that lupus sucks.