How I live with lupus
Many people call it “the disease with a thousand faces.” Contrary to what others think, lupus is not rare; but the condition can be different from person to person.
Its manifestations and symptoms are as varied as the imagination allows, which is probably why many people know little or nothing about lupus.
An estimated 1.5 million people around the world are diagnosed with it—and some may not even be aware that they have it.
Doctors sometimes call it “the great pretender” because its symptoms mimic those of other illnesses. The name by which it is known alludes to the wolf (lupus is Latin for wolf); this is because some skin rashes caused by lupus bring to mind the bites of a wolf, or resemble the markings on a wolf’s face.
Most people mistake lupus as a skin ailment. But actually, there are many forms of it. One of them, discoid lupus, affects the skin in the form of lesions and scarring. But another form, systemic lupus erythematosus (or SLE), can affect any part of the body.
In a chronic, autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances like bacteria and its own cells and tissues. The immune system then makes antibodies that attack itself, causing inflammation to various parts of the body.
The only course of treatment is through anti-inflammatory and immunosuppressant medication. The cause up to this day is still unknown, but doctors attribute it to genetic factors that can be triggered by environmental factors like stress.
I have been living with lupus for almost two decades. At the time of my diagnosis, I didn’t know much about lupus, only that one of our former presidents reportedly passed away from complications of the disease.
Difficult to diagnose
Because the symptoms of lupus can be similar to those of other illnesses, it took a few years for my doctors to make the right diagnosis.
I can trace it at age 11, when I had a hemorrhage in my left eye. At that time, I was tested for leukemia, diabetes and other diseases you can name, but they couldn’t come up with any cause.
The next year, when my fingertips and toes started swelling, they thought it was rheumatoid arthritis. It was only a few years later, at age 17, when I started having chest pain, falling hair and a butterfly-shaped rash on the cheeks, that I consulted a rheumatologist. After some tests abroad, it was confirmed that I had systemic lupus.
To say that lupus changed my life is an understatement; aside from the occasional, unexplainable pain or fatigue that you get on your “bad” days, the changes in my physical appearance affected me the most, especially since I was diagnosed in my teens, an age when you can say that one’s self-esteem is at its lowest.
Weight gain and rounding of the face are just a few side effects of my medication (prednisone, a corticosteroid). My friends at that time can attest to how depressed I would get at my thinning hair, especially when I was put on cyclophosphamide therapy (a chemotherapy medicine) a few years later because of lupus nephritis (inflammation of the kidneys). I lost so much hair that I had to cut it really short. And even when my hair grew back, the texture was not quite the same as before.
Looking OK, feeling otherwise
Lupus affects people differently and it doesn’t always have outward manifestations. People assume that because I look OK, I am OK. Though I am thankful that I look OK, it’s also difficult for some to understand how I can feel well sometimes and not feel good the next day, and vice-versa.
It’s a difficult task, having to explain these things, when I can’t quite predict how and why things happen.
One thing I am very cautious of, sun exposure (prolonged sun and UV light exposure is said to trigger a lupus flare-up), would give my colleagues the impression during press junkets that I just didn’t want to tan, but actually, even if I wanted to swim and sunbathe all day, I couldn’t.
It was perhaps fate that I stumbled on a career in magazines, because it somehow made me cope in the only way I know how—with style. With lupus, I just had to accept that nothing in me can ever be normal, so I just created my own version of “normal.”
Even when I wasn’t feeling well, I used all the tricks I learned from friends and colleagues in the industry to help me look my best. I styled and accessorized literally, and figuratively.
At each stage, I have tried to do what I could and not dwell on those I couldn’t. Instead of thinking that health is the absence of disease, I have come to believe that health encompasses joy, good relationships, peace and the ability to survive change.
Like other stories I’ve read about people dealing with lupus, people cope in different ways. I found that the best way for me is a combination of traditional medicine and alternative routes like meditation, Reiki, acupressure, among others. The latter alternative routes help keep me balanced and help me cope with stress (studies show that stress also contributes to lupus flare-ups).
When you have lupus, it can be frustrating that it takes more energy to do things that most people can do easily. Because of my medication, I can be prone to infections, but I feel lucky that I’m able to work and do things that I love. My current work setup, which involves working for the family business, designing jewelry and writing, gives me the advantage of flexible hours. Compared to other people, my schedule doesn’t just include penciling in my appointments; I also have to consider resting hours to conserve my energy. I have to learn to listen to my body and know when to slow down or stop.
Today, my condition is stable, thanks to a combination of medicines and several doctors who have been taking good care of me all these years.
It takes a village, they say, but credit goes to several doctors (mainly, Dr. Gary Feldman, Dr. Tito Torralba, Dr. Sandra Torres, Dr. Rody Sy, Dr. Benjamin Lazo, Dr. Carlos Naval, among many others), as well as the support of family and friends, for keeping me in the best shape possible.
Sadly, lupus doesn’t get much awareness and support.
You can learn more and help by visiting www.lupus.ph, www.luisaproject.org, www.lupus.org and www.lupusny.org.
Warning signs of lupus
Lupus can mimic the symptoms of the common flu. See a doctor immediately if you experience some of these symptoms:
1. Joint pain
2. Swelling of the legs
3. Butterfly-shaped rash on the cheeks
4. Bluish fingers
6. Hair loss
E-mail the author at firstname.lastname@example.org
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