Let’s talk about autoimmune diseases, a category of chronic conditions that affects approximately 50 million Americans. This means that 1 in 5 people in the United States are diagnosed with one of the 100+ types of autoimmune diseases during their lifetime. An autoimmune disease is a condition where the body’s immune system is not able to differentiate between healthy cells and viruses, and therefore mistakenly attacks healthy cells which then slowly breaks down the body’s ability to function and protect organs. Initially assumed to be caused by a past infection or genetics, researchers are now finding that lifestyle and environment may be the leading cause for these disorders. Many of these autoimmune diseases have similar symptoms, making the disease hard to diagnose and treat, leaving many sufferers without an official diagnosis for years. Even after diagnosis and prolonged medication, symptoms can reappear suddenly during the patient’s lifetime. The reality of having to take care of or hide an illness for a lifetime can be a difficult pill to swallow.
Autoimmune diseases are directly related to physical symptoms, and many times patients can appear to be perfectly healthy on the outside. However, there is also a mental illness portion of the condition that is not often spoken about. Autoimmune diseases tend to be a grey area for many. People usually only learn about them if a family member or friend is diagnosed, and patients usually do not discuss the details of what it is like to have a condition. Not because it is taboo, but because it is uncomfortable and upsetting to talk about the physical and mental pain that comes with the diseases. But like mental health conditions, starting the conversation is the first step to learning how to spread awareness and create a support system. This is why I am writing about autoimmune diseases.
Two years ago, I was diagnosed with Lupus. In my case, my immune system was attacking my healthy tissue cells. The symptoms first showed up at the beginning of the summer after my sophomore year and progressively got worse until I was diagnosed in December. At the peak of my symptoms, my joints were inflamed to the point where I could not walk without pain and I couldn’t close my hand around a pencil. I hid my receding hairline and red inflamed face that made smiling difficult. Just like my doctors, I did not understand what was happening to my body. I did not want to ask for help and I did not know who to turn to. I quit the sport that brought me to Stevens and stopped hanging out with my friends. I isolated myself mentally because I did not want pity. I believed that no one would understand the true feeling of being trapped in one’s body.
Even after being diagnosed, the recovery was half the battle. I did not simply wake up the day after my diagnosis and feel 100%. It was a series of medications and more doctor visits. I always felt a mental cloud and found myself breaking a sweat during physical therapy sessions dedicated to regaining function in my fingers, which in retrospect is hilarious. I was scared that I would never be “normal” again or that my medications would completely alter the person I was. But during the spring semester, I learned how to openly talk to friends and even strangers about my limitations, mentally and physically. It is incredible, the amount of weight that was lifted off my shoulders each time I was honest about how I was feeling, instead of hiding behind a mask of a person that I thought I was expected to look and feel like.
I now have a group of friends and support groups online that have supported me through relapses, and I am even more thankful for the days that I can walk to the places I want to go. I fear the days of relapse, but it has pushed me to do more things and to go all out with my passions. I would even say that I would not be the person I am now without Lupus.
An autoimmune disease does not define a person but rather makes them stronger. Talking about it rather than hiding the physical limitations is one step towards strength. Embrace the person you are and things will get better. When they do, it will be great.
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