The Lupus Chronicles Plus: I'm A Rare Find

7.16.2005

I'm A Rare Find

Not so few people, my doctor included, have told me that it's very rare to find men with SLE. I remember the very first time I saw my doctor in a hospital bed at the Philippine General Hospital 12 years ago. She patted my thinning crown (due to hair loss) while talking to the resident physician and said, "Espesyal 'tong batang 'to."

True enough, most of her patients with SLE were female. The only guy with lupus that I know, and so does everybody else, is deposed president Ferdinand Marcos. It probably strikes men of great minds only. Wahahaha.

Kidding aside, having SLE when you're a guy poses a problem which I think is peculair for men only. We cannot afford to slow down, especially if we're breadwinners in the family. We don't have the luxury of having to afford to take it easy. We can't, for example, resign from work and look for less-stressful-but-low-pay work when our doctors advises us since we don't have husbands/boyfriends who can support us, not like women in the same situation as us can do. Even my doctor acknowledges this. When my doctor told me to slow down 12 years ago by taking leave from school for a semester, and then another semester, I could afford it because we were living with my aunt. This second time around, my doctor knew I'll have some reservations because unlike the first time, I am already supporting a household.

In the end I guess it's always up to the man concerned if he wants to take his doctor's advice or reach some compromise somehow. I'm not aware of any study on the life expectancy of guys with SLE, though I cling to my doctor's assurance that the probability ofa car driver dying of an accident in EDSA is higher than the probability of me dying of SLE. It's not really reassuring but it'll do. I am reminded of this quote from the HBO miniseries, Angels in America:
"So we live past hope. If I can find hope anywhere, that's it. That's the best I can do. It's so much not enough. It's so inadequate. But still . . . bless me anyway. I want more life."

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Living with SLE

SLE is not understood well enough to be prevented, but, when the disease develops, quality of life can be improved through flare prevention. The warning signs of an impending flare include increased fatigue, pain, rash, fever, abdominal discomfort, headache, and dizziness. Early recognition of warning signs and good communication with a doctor can help individuals remain active, experience less pain, and reduce medical visits.

Avoiding sunlight is the primary change to the lifestyle of SLE sufferers, as sunlight is known to exacerbate the disease. Drugs unrelated to SLE should be prescribed only when known not to exacerbate the disease. Occupational exposure to silica, pesticides and mercury can also make the disease worsen.

"Lifestyle and home remedies" by Mayo Clinic staff

Eat a healthy diet. A healthy diet emphasizes fruits, vegetables and whole grains. Sometimes you may have dietary restrictions, especially if you have high blood pressure, kidney damage or gastrointestinal problems. And although no specific foods have been shown to cause or worsen lupus, it's best to avoid any food that seems to make your symptoms worse.
Don't smoke. Smoking increases your risk of cardiovascular disease and can worsen the effects of lupus on your heart and blood vessels.
Get regular exercise. Exercise can help you recover from a flare, reduce your risk of heart attack, help fight depression and promote general well-being. Exercise as much as your body allows — aim for 30 total minutes of activity most days of the week, which can be divided up throughout the day. You'll likely feel fatigued and not up to exercising sometimes, and that's OK. Rest when you need to. Time outdoor activities so that you avoid the sun when it's most intense, and if you're having a flare, stay out of the sun entirely.
Be sun smart. Because ultraviolet light can trigger a flare, wear protective clothing, such as a hat, long-sleeved shirt and long pants, and use sunscreens with a sun protection factor (SPF) of at least 15 every time you go outside, even if it's just a quick trip to the mailbox. Be sure that your ears, scalp and the backs of your hands are protected. Avoid tanning beds and stay out of the sun entirely when it's strongest, from 10 a.m. to 4 p.m. if possible. Because fluorescent and halogen lights also can emit ultraviolet (UV) rays and thus aggravate lupus, you may need to wear sunscreen and protective clothing indoors or use plastic devices that block UV emissions from indoor lights.
Get adequate rest. People with lupus often experience persistent fatigue that's different from normal tiredness and that isn't necessarily relieved by rest. For that reason, it can be hard to judge when you need to slow down. Get plenty of sleep a night and naps or breaks during the day as needed. Friends and family members need to understand and respect your need for rest.