October is a month of many things – the first full month of autumn, Halloween, time changes, and Breast Cancer Awareness. Yet October is also a month of awareness for a lesser publicized disease called lupus, which has two forms: Systemic Lupus Erythematosus (SLE), which most commonly affects the joints and kidneys, and can cause severe damage to the heart, lungs, liver, muscles and nervous system; and Discoid Lupus, which affects only the skin, but can, in some cases, develop into SLE.
For 30 years, the Lupus Association of America has gone to great lengths to help educate people about both forms of lupus. Currently, about 1, 500,000 people have lupus in
A survey of 1000 people showed that only 38% of those polled had some knowledge of lupus, 39% had merely heard the name of the illness and 22% had never heard of the disease. Obviously, awareness of lupus is severely lacking when compared to other diseases, although knowledge has increased steadily over the past 30 years, including education for doctors about the illness. For more information about general facts and questions about lupus, please go to the LFA’s website Facts and Overview section.
I was diagnosed with SLE at the age of seven in the spring of 1977. While it had been years since the diagnosis of lupus meant a death sentence, the prevailing attitude of the time was that lupus was more deadly in children. With some damage already to my kidneys, my pediatrician took this to heart, and prescribed me a dosage of a steroid drug called prednisone that we would later learn was three times what should be given an adult with a lupus flare-up. To my doctor’s credit, he had no idea it was such an overdosage, and not much knowledge of lupus. His main concern was keeping me alive. Unfortunately, the side effects of the prednisone would change my childhood, and some of the aftereffects would change my adult life as well. My growth was stunted (I’m 5’2”, luckily my genes had destined me to be tall so I had already done a lot of growing at age 7), I swelled and gained weight like a blowfish, and my bones became soft. Not having any warning about the latter, I still played and was as active as I could be as a child with an illness, and as a result the soft ball joint of my left hip collapsed. Someday soon I will need hip replacement surgery.
As a seven year old I had little understanding about what it meant to have a chronic illness. All I knew was that I couldn’t play in the sun anymore without wearing a hat (boy, that was a major inconvenience), I grew tired easily, and my grandmother and I had matching days of the week pillboxes filled to the brim with pills. I also knew that none of the other people with lupus at the support groups were anywhere close to my age. At that time it didn’t bother me so much, but by the time I was twelve not knowing someone going through similar things was very difficult for me.
When I became a full-fledged teenager I developed a sense of defiance about my illness. In true teenage fashion, I decided my parents and my doctors were morons who knew nothing and that the whole diagnosis was a lie. So I proceeded to sit in the sun to try to get a tan, starve myself to get thin, and in general not take care of myself. My body did not react to this very well, and I spent part of the first half of my junior year in the hospital and being home schooled. Ooops.
In college I had a rather insouciant attitude about my disease. I knew what the consequences would be, but I wanted a semi-normal life. I avoided the sun, but I partied. Hard. Sometimes I stayed up for two or three days at a time. That, too, took its toll on my body. A couple of hospitalizations got me back on track.
Now that I am in my thirties, I’ve learned a lot about living with a chronic illness. With one kidney barely functioning and another that works moderately well, I’m too wise, too tired, and too disgusted by the prospect of a kidney transplant (seriously, I won’t eat food off of other people, do I really want someone else’s kidney??) to take any more risks with my body. My disease has become more like a part of my personality than an enemy combatant. A good sense of humor, tons of love and support from family and friends, and a lot of years of paying attention to what my body needs keep me sane and relatively healthy. I have had to make lots of amends and changes in my lifestyle to ensure that good health, but I’d rather do that and enjoy as long a life as possible than risk extreme sickness or death.
All that being said, I can offer a few words of wisdom to anyone who has recently been diagnosed with lupus:
- Keep your sense of humor close, and if you don’t have one, find one quick.
- Find a good rheumatologist, one that you can communicate with and feel comfortable with. Don’t be afraid to ask questions – you are paying for his/her time, make the most of it. Work with your doctor, not against him/her. If you don’t think a treatment is working, discuss it before taking matters into your own hands.
- Learn how to read your body. Understand how tired means too tired. Understand what feelings you have when you are getting ill. Get rest when you need it.
- Understand your body’s reaction to the sun, and don’t take unnecessary chances. I know this can interfere with your life, but if you are someone who likes to do a lot of outdoor activities, take the right precautions – high SPF sunscreen, hat, and reflective clothing that covers your body.
- Don’t be afraid to ask for help when you need it. Family and friends should be your saviors in times of need. Rely on them, keep them close, and do for them in return when you are able.
Obviously, there is more to my story of life with lupus but I’ve kept it as short as possible to keep from boring people to death. My main motive here is to share information about lupus to increase awareness of the disease. If anyone who reads this has questions, needs advice or a friendly ear with regards to lupus, feel free to email me at the contacts link or send me a message via MySpace.