Learning to Live (and Love) with Lupus

Learning to live with lupus after ten years. 

I have never publicly announced this before now, so please bear with me because I am feeling a little awkward doing so. (And as much as I hate to admit it, I am a proud and private person.) Well, here it goes (hard swallow): I have lupus. I was diagnosed a little over ten years ago, when my life shifted in a way I can only explain as upside down and inside out. I was going to school full time and playing collegiate volleyball when I started to feel overwhelmingly and inexplicably exhausted. I began to lose a lot of weight. I spent every second of the day in bed sleeping when I wasn’t at volleyball practice or in class. My hip and knee joints started to hurt and I noticed that I could barely make it up a flight of stairs. It felt as though I had sandbags sitting on my chest and my eyelids were as heavy as bricks. My playing time on the court dwindled rapidly and I began skipping class to stay in bed. For months I was a shell of myself. My school doctors said I was most likely “just tired” due to my new collegiate workload. Finally, the trainer for my volleyball team brought me to a specialist in Sacramento and after ceaseless and terrifying medical tests, he determined that I had lupus.

For those unfamiliar, the highly informative website lupus.org states, “lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.”

This was over ten years ago and I still struggle with the reality of having the disease. It’s been a wild ride: the disease has hospitalized me, affected various organs like my heart, kidneys, and lungs, and was responsible for dumping loads of pharmaceutical drugs into my body. I have days filled with frustration, anger, and sadness. And some days I even grieve for my life before lupus. However, there are also good days in which I feel so healthy that I forget lupus resides inside me. Sometimes I live in a place of denial of the disease, but sometimes I recognize the reality. Every day is different.

May is Lupus Awareness Month and I wanted to address the difficulties that come with this disease but also celebrate that living with lupus does not mean that life needs to be hindered. I have learned heaps about myself – physically, emotionally, and spiritually – by having lupus. It is a difficult disease to understand but I am learning that more people across the globe are affected by lupus in one way or another, which is why I felt led to vocalize my story. May I also warmly suggest learning what you can about it.

If you’re also living with lupus or another autoimmune disorder, please allow me to share a few things I have learned on my journey:

It is ok to rest, to sit things out, to say no. There will be people who do not fully understand what you mean when you say you feel tired, but that’s ok. You do not have to prove anything to them. And if you are a friend to someone who has lupus, encourage them to rest and support them when they decline social invitations due to feeling tired.

Follow up with your doctor. Do not miss appointments. Take your medicine. In all of those things I have slacked, and have ended up paying for it ten-fold.

You are not your disease. From time to time, I have had difficulty understanding this sentiment. I become impatient with my body. But I have learned over these years that I am a strong, able-bodied, and capable woman… even if I do have a few extra autoantibodies.

+For more information on lupus, please check out Lupus.org

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