May is Lupus Awareness Month, so I wanted to share a little bit about what lupus is. When the doctor first told me that I might have lupus, I had to look it up on the internet, and I’m sure there are many others who may have heard the term but have no idea what it means.
For starters, lupus is a chronic autoimmune disease. The immune system becomes overactive and attacks healthy tissues as if they were bacteria or viruses. It is characterized by pain and fatigue and inflammation, which can affect pretty much any part of the body–heart, lungs, kidneys, skin, joints, connective tissues. The symptoms vary from person to person and can change over time, making it challenging to diagnose and treat. The most easily recognizable lupus symptom is the “butterfly” rash across the nose and cheeks, though not all lupus patients experience it. (The name “lupus” is derived from the Latin word for wolf, because the rash resembles the bite of a wolf.)
Lupus is not contagious, and it’s not a form of cancer, but it’s sometimes treated with immunosuppressant drugs that are also used in treating cancer. Lupus predominantly affects women, and the onset is typically during the childbearing years, although men and children can also develop the disease. It is more likely to affect people of color than Caucasians.
I was diagnosed with lupus in February 2011 at the age of 34, but my initial symptoms–pain and stiffness in my hands–began in my late twenties. At first I thought it was osteoarthritis, because my mother has severe early-onset osteoarthritis in her hands. But in January 2010, my left eye became inflamed due to episcleritis, which my eye doctor said might be an indicator of an autoimmune condition. I was referred to a rheumatologist and began a year-long series of blood tests. It was a relief to hear early on that I didn’t have rheumatoid arthritis, but then he mentioned the possibility of lupus…and my life was forever changed.
Lupus is a disease of “flares” and remissions. Symptoms come and go, and sometimes you get new ones. You never know where the inflammation is going to show up next–it seems to make the rounds through my joints and connective tissues, it has returned to my eyes a time or two, and this spring it settled in the corners of my lips! I pray that it leaves my internal organs alone–that’s where the real danger lies. Sometimes you know what causes a flare (a stressful event, not taking care of yourself properly, being out in the sun, etc.) but sometimes it comes out of the blue with absolutely no warning.
Lupus is exhausting. Basically, your body is fighting against itself, and that’s very draining. The fatigue is unlike any I’ve ever experienced–it’s an ache throughout the whole body that almost feels like the flu. On those days, it’s best not to push it. So if I have to cancel an engagement at the last minute, don’t take it personally!
Lupus is learning new healthy habits. You can’t skimp on sleep, and there are some days I just can’t make it without a nap. You have to be careful not to overstimulate the immune system since it’s already overactive, so some “healthy” things (like taking extra Vitamin C during flu season, eating garlic, etc.) can actually make a person with lupus more sick! I’m trying to cut back on sugar and carbohydrates, which can increase inflammation, and eat more fruits and vegetables. Since sun exposure can cause a lupus flare, I stay out of the sun as much as possible (but that isn’t exactly new for me, since my natural skintone can best be described as somewhere between “artic white” and “cotton boll”). I’ve also learned that regular exercise is an absolute must to keep my joints moving and my stress levels in check.
Lupus is learning to cut back and say no. I’ve always had trouble with overloading my plate. My daddy used to step in and put his foot down when I committed to too much, and he specifically instructed my husband to do the same when we got married. But lupus put an end to that tendency. When you know that doing too much will cause you to feel absolutely miserable and that you will be unable to take care of your responsibilities while you’re sick in bed for a few days, you learn to live within your limits.
Lupus is also a reminder to do what’s most important and to enjoy life. It has taught me that my time and energy are valuable and finite, so I need to prioritize the things that are meaningful and leave out the rest. I have also learned to give myself grace on the days that I don’t feel good. Most of all, lupus reminds me to be grateful and to fully enjoy the gifts within each day.
On Friday, May 19th, I’ll be “putting on purple” for lupus awareness. For more information, visit the Lupus Foundation of America at lupus.org or lupusawarenessmonth.org. I’m so excited that we have a new lupus support group in the Dothan, Alabama, area and that we have a walk scheduled for September 16 at Westgate Park to raise funds for lupus research!