Living with an Autoimmune DIsease

Three years ago around this time, I sat nervously in an ER room. I felt weak and my body was in immense pain. On and off for a couple months, I would continuously get sick. Many doctors did not understand why. I would dramatically lose and gain weight and experienced hair loss at the young age of 15. After multiple doctors visits and tests, I was diagnosed with Lupus. At first my doctors thought I had a form of Crohn’s or Lyme disease because Lupus is very hard to diagnose. Lupus is an autoimmune disease that attacks your whole body. Basically, it’s an inflammatory disease caused when the immune system attacks its own tissues. Lupus can affect both men and women, but women at the ages of 14-45 are most affected. This is a disease that I’m learning to live with for the rest of life, and at the moment, there is no cure for it. If you know me, you can barely tell I’m living with a chronic illness. I never wanted to be known as the “girl who’s sick.” I didn’t want this disease to be the only thing people remembered me by. At the time, many of my friends and even some of my family did not know I was living with it. I have struggled emotionally because there is currently no cure for Lupus. There are days I get extremely worried and sad for my future.

 

Being a 19-year-old women, I have so many plans and things I want to accomplish. When I was diagnosed, it was like my whole life was put on pause. I played varsity and club volleyball for 6 years of my life, and for the first time, I was incapable of doing physical activity. Having a healthy lifestyle by exercising regularly has always been a big part of my life. Being a college student is hard enough, but dealing with a disease, it makes it 10 times harder. School can be extremely difficult because it also affects my central nervous system. I have difficulty remembering and retaining information. So, it makes studying for tests very frustrating. I have to take certain medications every day to keep my body alive and healthy, as well as exercising regularly. Infusions have also recently become apart of my process to recovery. Every month, I receive treatment that gives my immune system a little “boost.” It wasn’t until recently that I realized the importance of maintaining my stress. Stress is the number one factor that triggers my disease. When a flare comes up, I am incapable of moving because of how much pain my body is in. Since 3 years ago, I have grown and changed my entire lifestyle. I’m slowly starting to find myself more and more with every experience I have.

 

There are days that can be worse than others, but I try to take things day by day. There are days when I am admitted into the hospital thinking, this is it, my life is ending.

 

That’s the thing about Lupus, it can strike randomly and attack any of my major organs including my heart, kidney, brain, and liver. But there are also days I feel on top of the world; the healthiest I have ever felt. Now whenever I am going through remission, I realize how important my health is. This makes me also realize how important it is to take care of my body and my mind. I have such a great support system from my family and friends, and I hope by sharing a little part of my life, you are inspired to overcome any obstacles in your life. I thought I wouldn’t be able to travel or play sports ever again, but with a change of mindset and lifestyle, I am still able to do activities any “normal”, healthy person can. You’re never given anything you can’t handle, and you’re always stronger than you think. I, of all people, know what it’s like to feel hopeless and helpless. I think about how my life used to be and what it is now. I’m going to school in Tampa, Florida, one of the most beautiful places in the country. I have such great parents who are there to support me and my expensive treatments, and I have met so many amazing people during my time here. Lupus is just a part of my life, it’s not who I am. Every new day comes with new challenges, but now since I know how to handle different situations and circumstances, I can be successful. When I wake up every morning, I am alive, and I’m thankful.