Lupus: An invisible disease


MOODY AIR FORCE BASE, Ga. — “You don’t look sick.”

If I had a penny for every time I heard that statement, I would be a millionaire!

But, I am sick. I have Systemic Lupus Erythematosus, an autoimmune disease, which mistakenly attacks healthy tissues. It can affect the skin, joints, brain and other organs. In my case, it is attacking my kidneys.

According to the Lupus Foundation of America, I am the perfect target for a disease such as this. I am a 26-year-old black woman and one of five million people to develop a form of lupus. It’s unknown as to why women of color are three times more likely to develop lupus than Caucasians, but anyone, male or female, can fall victim.

I’m the type of person who hates to be blindsided, so being diagnosed with a chronic illness at 25 caught me by surprise. This chapter of my life took a turn for the worse, and I never saw it coming. I mean, what normal, healthy woman in her 20s would think she’d be considered disabled at such a young age?

I’ve always thought that I should be out in the world, living freely, and enjoying the things that others do. Instead, I find myself watching others do just that and me just trying to keep up.

For most people, living with a chronic illness seems like the hard part, but I say being diagnosed is the worst. It’s sort of like the movies when someone is being diagnosed with cancer. Words are muffled, time slows down, everything is blurry, and it feels like your world has been completely flipped.

The summer of 2016, before I was diagnosed, I was on my first deployment to Al Udeid Air Base, Qatar. I developed a throbbing and aching pain in my hips within the first week of touching down. Although it was difficult to walk, I thought nothing of it and continued to push through the pain. I disregarded the symptoms and continued to do my job for almost a month until I became seriously ill.

It was my day off, and, just like others who deploy and work 12-or-more-hour days, I was in bed all day. For me, it was not because I wanted to, but because I was unable to move. Every joint in my body was in excruciating pain and swollen, and I had a high fever. After being in bed in agony for more than 20 hours, I found the strength to make it to the base hospital. I was medically evacuated to Germany where I was diagnosed with lupus. My first question to the doctor was, “How do we fix this?” Unfortunately, you don’t ‘fix’ a chronic illness.

You learn to adapt and live with it. A part of that is telling your closest friends and family. You may get a sympathetic response such as “Get well soon,” or a compassionate, “You’ll get through this.” Or, you may get an ignorant response such as, “Can you catch it?” But, you have to remember, this is not only new to you, but to them as well.

Your life changes completely. You become unreliable to those who need you because who knows if you’ll be able to get out of bed the next morning. Your body is no longer yours.

Lupus is considered the invisible disease. Someone, whose symptoms are not as severe, may appear as if everything is fine, when in all actuality, the individual is fighting symptoms such as chronic fatigue, joint aches, pains, and swelling. It’s not so invisible for those who hide from the sun and its rays that tattoo their skin with heat rashes.

People say, “At least you don’t have cancer,” but cancer has treatments and can be cured. My lupus is here to stay. Although my symptoms can lessen, I maintain the disease. I will live with it for the rest of my life. I compare it to my shadow. Even on your best days, it’s lurking behind you, ready to strike at any moment.

Many people ask how I fight the fight. I tell them you just have to do it. You force yourself to get up. You refuse to let it get to you. You may cry, curse and feel like giving up, but you don’t. That’s how I’ve done it and will continue to do so.

Lupus is only a chapter in my book, not my whole story.