For years I’ve lived with a condition that has, at times, left me self conscious and unwilling to go out unless pushed when a flare has hit me. Lupus can be a painful and debilitating illness to live with, but one of the most difficult aspects of living with Lupus, for me at least, has been the all too visible outbreak on my face when I’m heading into a flare.
Lupus is an autoimmune problem and one of many that now strike millions across the world. It can affect various parts of the body, from the skin to kidneys, joints, heart, lungs and more. And because it’s an autoimmune the body can’t tell the difference between foreign substances and its own tissues. This makes it all the more difficult to fight, diagnose and live with.
But Lupus patients have one extra nasty little detail to deal with, that only adds to the discomfort. A red, scaling, and sometimes oozing breakout across the nose, bridge of the nose, and around the eyes. Imagine waking up in the morning, thinking you’re going to have a normal day only to feel a tightness across your face. You stumble out of bed, look in the mirror and it’s there. Mild at first, but you know what’s coming.
Across your nose is red. Small flakes of skin are already beginning to ‘chip’ away from your face. The breakout might stay small, you hope it will, because in this world of perfect skin and flawless beauty expectations what could happen to you will make you stick out like a sore thumb. So you wash your face, try not to rub too hard though the itching is already starting, and apply whatever cream you’ve discovered works best for you. For me it’s hydrocortisone, but I know I have to be careful with it, because it can actually make matters worse if I use too much.
By noon you’re dreading looking in the mirror. Even wearing glasses is aggravating it, but you need to wear them in order to get through the day. There’s a thin crust forming over the areas where the skin has been knocked away and you can feeling the plasma almost oozing down your face. You try not to make it worse, but every now and then you catch yourself reaching up to scratch or rub and you growl, and find something else to do with your hands.
By the time your husband, because 90% of lupus sufferers are women, comes home, you’re in tears. How could anyone love such a hideous monster? You feel like a mummy that is flaking apart. You’re not human. People stare if you go out like that and your self esteem crumbles to the point where you can’t – no – won’t look in the mirror. To make matters worse you know this might only be the beginning of something far worse. The rest of the flare. The part they won’t see so easily. But right now, at that moment, you’d give anything to be able to look into the mirror without cringing.
The breakout isn’t the worst of the physical effects of lupus, but it’s the one others are most likely to see. The flare across the face can be tiny for some patients, little more than a red rash that looks a little sore and raised, almost as though they’ve caught a little sun. Then there are others who can end up looking as though half their face is in the process of peeling off. It can reach into the hair line and destroy, if only for a day, that patients willingness to go outside and stand in the full, public view of other, less than sympathetic eyes.
I find it easier to cope with the pain, the tearing feeling in my joints, the inability to breathe and knots through my body, than I do to see that look of disgust and horror that I see in other people’s eyes when I have a bad flare so visibly spread across my face.
Lupus is named for the wolf like mask that the flare can form across the face, but there are times I’ve almost begged for a real mask to wear in order to hide that break out just so I can look someone else in the face and not see the disgust written so clearly in their eyes.
