I am 18 years old and I was diagnosed with lupus at age 7. After 11 years of illness, I can't even remember what it feels like not to have it. Lupus, a chronic autoimmune disorder, and I start every day feeling like I have the flu. Some days it lasts only a few hours and I can carry on with a fairly normal routine of going to school and socializing with my friends. Sometimes it doesn't subside at all for days or weeks or months at a time. And this is only one symptom of the complicated disease, lupus.
Influenza season is here again and most people dread the thought that they might succumb to it. Everyone knows what it's like: the muscle and joint aches, the fever, the fatigue that makes you want to stay in bed forever, and that horrible all-over-sick-feeling that flu is known for. Flu sufferers can console themselves that at least this feeling won't last forever; they will likely feel better in a matter of days. But what if it did last forever? How would that change their lives? Many lupus patients face this challenge.
With lupus I don't know how I'm going to feel from minute to minute, because that's how fast it can change. I might be sitting in class or talking with friends when suddenly I feel incredibly sick. Sometimes it feels like the room starts to spin, my vision blurs, I feel nauseated and the pain in my head can be overwhelming. This is the start of a lupus migraine and there is no warning. It can happen anywhere, anytime, and when it strikes, it's terrifying, not only for me but for those around me.
I have to deal not only with the migraine itself and how to get home safely, but the embarrassment of becoming sick in front of my friends or teachers or strangers. Sometimes I will suddenly get hives all over my body and feel sick all over, or my eyelids and face will swell as if I had just been stung by a bee. Other times I will suddenly feel so exhausted that I can hardly move. I may get localized pain in one joint or I might hurt all over. I can get chest pain that makes it hurt to breathe, or severe abdominal pain.
Usually I have a good memory and learning new things comes easily. When my lupus is active I can't get my brain or my body into action. Learning new things becomes a struggle and I forget many things I already knew. This is not only frustrating, it's also very frightening. The unpredictability of lupus is one of the greatest challenges lupus patients face. I can never depend on being able to do something I plan or commit to. I am often unable to attend school or get to work.
Overwhelming fatigue is one of the hallmark symptoms of the disease and although the level varies from day to day, it never goes away completely. I make the most of the hours when I feel good, because I know they won't last. I do as much as I can before the sick feeling comes back. If I do too much, I know I will pay for it later.
Sometimes lupus will go into remission for weeks or even months, and I can do more of the things I want to, but once it becomes more active, it is difficult to get under control. There is no cure for lupus. Drugs which suppress the immune system are used to try to decrease the symptoms and limit the damage to major organs, but they are not always successful. Kidney disease is a common complication and many kidney transplant cases are a result of lupus.
I have to work very hard to stay as healthy and fit as possible, but it's a challenge and often discouraging. Having a chronic disease makes me lead a much healthier lifestyle because I don't take my health for granted. It bothers me to see so many people take chances with their health through poor lifestyle choices such as smoking, drug or alcohol abuse, poor diet or lack of physical fitness. My illness has made me acutely aware of the value of health and I constantly strive to improve mine through phys ical fitness and a healthy lifestyle.
Stress is a major trigger for a lupus flare-up so I need to minimize it whenever possible. In the past I never discussed my illness with my friends because I was afraid they would treat me differently. It is such a hard disease to explain, it seemed easier to avoid telling anyone about it. This has led to many problems for me, because people did not understand why I was sick so much or why I could do so much one day and so little the next. I have been called lazy and accused of not making an effort.
I was once told by a staff member at my former school that it would be easier for them if I had cancer or a broken leg because it would make me look sick. Cruel remarks such as this stem from ignorance, as most prejudices do. By making people more aware of lupus I hope to prevent this sort of reaction for other lupus patients and make it easier for people involved with them to understand the challenges they face.
Lupus is not well understood. This disease of the immune system, often referred to as "the disease of a thousand faces" produces a wide range of symptoms that may come and go, and vary widely among patients. Over 50,000 Canadian are known to have this desease, most of them women of childbearing age, but it can affect anyone.There is no cure for lupus and the cause or causes are not known.
I am asked "what is lupus" repeatedly, and I explain to people that lupus occurs when the body is challenged by various viruses and organisms and responds at first as a normal immune system would by producing antibodies to destroy invaders and protect the body. In people which Lupus, however, the immune system sometimes does not shut off its production of fighter antibodies, and this can result in potentially life-threatening damage and inflammation to major systems and organs. The name lupus is derived from the Latin name for the wolf, lupus canis. Lupus patients often have a facial rash that causes reddening of the cheeks and across the bridge of the nose, in a shape similar to the mask markings of the wolf. My rosy cheeks are often ironically mistaken for a sign of good health and people will tell me how well I look when I'm feeling terrible.
I use the wolf comparison to describe lupus for several reasons. The wolf is one of the world's most misunderstood creatures and has suffered greatly as a result . Because of a lack of awareness of the disease, lupus patients are also often misunderstood and are accused of being lazy or hypochondriacs. They are often misdiagnosed or remain undiagnosed due to the variation in symptoms between patients, and the disease's characteristic of alternating periods of active flare-ups and remissions.
Wolves have become marginalized by man's disregard for their habitat and needs. Similarly, many Lupus patients feel isolated and overwhelmed by their disease and become marginalized as a result.
Lupus canis, the wolf --is a symbol of strength, courage and endurance -- qualities that patients need to face the challenges of living with lupus.
