Lupus Awareness Month: Being visible for an invisible disease

May is Lupus Awareness Month. Systemic Lupus Erythematosus, the most common form of lupus, is a chronic autoimmune disease that can cause severe fatigue and joint pain. Anyone can develop lupus, but it most often affects women. Lupus is also more common among African American, Hispanic, Asian, and Native American women. (U.S. Air Force illustration by Staff Sgt. Olivia Dominique)

May is Lupus Awareness Month. Systemic Lupus Erythematosus, the most common form of lupus, is a chronic autoimmune disease that can cause severe fatigue and joint pain. Anyone can develop lupus, but it most often affects women. Lupus is also more common among African American, Hispanic, Asian, and Native American women. (U.S. Air Force illustration by Staff Sgt. Olivia Dominique)

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

 

Certainly not me. I’ve always thought to myself 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.

 

Before I was diagnosed, it was the summer of 2016 and I was on my first deployment to Al Udeid Air Base. 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 many other deployers who spent 12 hours or more at work, 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 for more than 20 hours in agony, I thought I was going to die.

 

I found the strength to make it to the base hospital, which ultimately led to being medically evacuated to Germany where they later diagnosed me with lupus. My first question to my 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’ll either get a sympathetic response such as “get well soon,” or a compassionate one like “you’ll get through this.” On the contrary, you might 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 feel like you’re completely 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 “your body.”

 

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 and I can 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.

 

Most people ask how I even fight the fight. I tell them that 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 don’t. That’s how I’ve done it and will continue to do so.

 

May is Lupus Awareness Month. Wear purple and be visible for those who are constantly fighting this invisible disease. Although people may not look “sick,” remember that there are people who are constantly fighting this invisible disease and understand that we are doing the best we can. We are sick of being sick and we just want you to understand.

 

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