Her Story: The Invisible Disease

            Lupus has been front and center lately in the news because Selena Gomez has come out and said that she has the disease. Lupus is an autoimmune disease that affects more than 1.5 million Americans and most people don’t know what it is. I didn’t know what it was either. The first time I heard of lupus was when I was diagnosed with it.

            Have you ever been sore for so long that you don’t remember what it was like to walk without pain? That was my first sign that something was wrong with me. It started January my junior year in high school. I’m a dancer--so I’m used to being sore sometimes, but this was different. My entire body ached and it felt like I had been beaten up the previous day; arms, legs, abs, neck, you name it and it hurt. I was exhausted every day from the enormous effort that any movement required.

            I’m one of those people who hides when they’re hurt and insists on pushing through it, so it was a while before I told anyone about being sore and tired all the time. This went on for a while until I went to the doctor and was tested for mono and Lyme disease, both of which came back negative. After that, they didn’t have any other answers for me.

            My high school has four floors and a basement. Walking up and down those stairs everyday was horrible; each step required concentration. I couldn’t hold a conversation while I was on the stairs. Still, I kept a smile on my face and no one besides my family (really only my parents) knew how much pain I was in.

            I kept going to the doctor to try and figure out what was wrong with me. In the meantime, my joints started to hurt and my knees and knuckles became swollen. In the summer, my elbow locked and for a month I couldn’t straighten my arm. Around this time I started having a pain in my chest. I couldn’t lie down without the feeling like an anvil was on my chest. I couldn’t be that active without feeling as though my chest was on fire. I was constantly on the edge of tears, fighting against the pain that none of my doctors could stop or even tell me why it was there.

            When school started again the pain in my chest was so bad that I went to a specialist and he told me I had pericarditis, which is a heart condition. I was told I couldn’t dance until it went away and that is when I had a breakdown. This situation already had me emotionally stressed and not in the best place, but this was the breaking point. I cried in front of my entire dance team and was inconsolable until the pericarditis was no longer a problem a few weeks later.

            In November my family went on vacation to Hawaii, which should have been so much fun. Instead, I remember being barely able to walk down to the beach and struggling to get up from a beach chair. I got a rash all over my body and a butterfly rash on my face. I was tired, emotionally spent and on the verge of tears in one of the most beautiful places that I have ever been to. In all my pictures from that trip I’m smiling and I look like I’m having the time of my life. Even I forget how much pain I was in when I look at the pictures, they’re very deceiving. I wish my vacation had been as wonderful as the pictures made it look.

            After that, I went to a rheumatologist and by January he had put me on a medication that made my symptoms almost disappear. Now, almost 2 years after the first symptoms started, I walk without pain and my joints don’t swell up without a reason (normally). I can’t spend a lot of time in the sun (this causes the rash to return and a resurface of the rest of my symptoms) and when I get sick, all my symptoms come back full force, but I can live with all of that. My case of lupus responded really well to the medication, which isn’t the case for everyone. I am lucky and grateful that my medication works so well.

            Lupus is an invisible disease. My friends didn’t know I had lupus or was suffering everyday. It’s easy to hide behind a smile that doesn’t reach your eyes or a diverting question. It’s easy to wait until you’re alone and let out the gasps of pain or to let the tears fall. I don’t need to do that anymore. Now, my favorite thing in the world is feeling sore from the gym. I know why I’m sore and I know it will go away.