I’ll never forget the day that changed my life.
It was just a normal Friday, with me just sleeping in my twin bunkbed before getting up for class the next morning. At 3:34 a.m., I woke up and rolled on my side, and in the blink of an eye, I experienced an unbearable pain in my leg that I had never felt before. I laid still for a moment in an attempt to stop the pain. Once the pain was settled, I tried to move my leg again. The pain had shot through once more. Panicked and not having a clue what was happening, I decided to stay still, but the pain never stopped. Being the person that I am, I didn’t want to wake my roommates up, so I laid there alone, quietly crying in pain, until about 7 a.m. that same morning.
Over a year has passed since that day in January. After months of going from doctor to doctor, taking seemingly never-ending tests, I was diagnosed with the autoimmune disease known as Lupus in May of 2015. The month of my diagnosis also happens to be Lupus Awareness Month. However, many people are unaware that this month is dedicated to this disease, let alone know what Lupus is.
Lupus is a chronic autoimmune disease that can damage multiple parts of your body. Damage can occur in your skin, joints, or even the organs inside your body. Our immune system is what protects our body from viruses, bacteria, and germs, by having antibodies. However, when someone has Lupus, their immune system isn’t able to tell the difference between bacteria and a healthy cell. These antibodies end up attacking your healthy cells, which causes pain, inflammation, and damage within our bodies.
I am 19, a college woman, and learning how to balance my college life with a life of Lupus. Thus, life with Lupus consists of flare-ups, hospital visits, a pill case that makes me look like I’m actually 65 years old, and potential chemotherapy in my future. Women and men with this disease also go through these same struggles to live life, whether they are on the young end of the spectrum or develop it later in life. I have to manage my stress, make sure to eat healthy, find ways to work out without hurting my joints, not stay out late multiple nights, refrain from pulling all-nighters, and somehow continue to live the same college life as my peers. Although older women and men with this disease don’t have those exact same issues as I do, we all have something in common: we are trying to help people understand our disease, as well as let the world know that we won’t let Lupus define us.
The most frustrating thing that people with Lupus hear when explaining the disease is “Well, you don’t look sick!” We understand that people don’t know what it’s like to live with Lupus. We are still learning to live with it and even understand it ourselves. Every case of Lupus is different from the next, but just because we “don’t look sick” doesn’t mean we aren’t fighting a battle with ourselves every day of our lives. With that being said, just because Lupus becomes a major part of our lives, that doesn’t mean we let it control and take over our lives. I don’t let Lupus define me. I have overcome Lupus in many situations, just like my peers. I still go to school, I have a job, I volunteer, I still push for my dreams to come true, and I don’t let Lupus stop me from enjoying the many positive aspects of life.
Whether you are a best friend, caregiver, spouse, sibling, co-worker, or just know of someone who has Lupus, you can help make a difference in our lives. We aren’t asking you to take pity on us or asking you to do everything for us. If anything, having Lupus makes us stronger and more independent in our lives. However, we can always ask the world for help in changing the fate of Lupus and turn it into a curable disease. Even though it might not be as well-known, people with many different forms of Lupus deserve care, just like everyone else with another sort of disease.
We can all help the world be aware of Lupus this month of May. The first step in helping someone with Lupus is as simple as educating yourself. We must “Know Lupus;” there is strength in knowledge.