Autoimmune Disease as an Invisible Illness

[Summer of 2011] One morning I woke up and was paralyzed by aching throughout my entire body. Any move I made caused excruciating pain in my joints. I could not even turn over in my bed without feeling agonizing discomfort. I became completely reliant on my mother to do everything for me. I gained twenty pounds in one week from severe inflammation. After many visits to the doctor, countless painkillers (which did nothing to ease the pain), and endless frustration, I was diagnosed with Psoriatic Arthritis. I was put on a biologic and returned to school a few weeks after the fall semester began. Everyday was a battle against my joints, fatigue, and other disabling symptoms.

[January of 2012] Out of nowhere, I was consumed by unbearable stomach pain, unlike anything I had ever experienced before. I was in and out of the ER three times that weekend. I could not even swallow water without feeling agonizing pain. The hospital staff thought I was faking it because all of my tests consistently showed up negative.

Finally, I was admitted to the hospital and given camera study, which revealed that I had bleeding ulcers in my small intestine and I was diagnosed with Crohn’s Disease. Two weeks and 25 pounds lighter, I was once again placed on a biologic and returned home from the hospital. I took the next seven months to recover. I despised being bed ridden, but, even something as simple as joining my Mom at the grocery store caused extreme exhaustion. It was a long road to recovery. For the next few years, I faced a constant battle with my disease. I failed multiple treatments and suffered paralyzing symptoms all while trying to stay in school. Finally, my amazing doctors came up with a solution that worked. I was placed on Stelara, a biologic approved to treat Psoriasis and Psoriatic Arthritis and in testing for Crohn’s Disease. I am fortunate enough to have access to Stelara, a drug that has changed my life. For the first time in three years, I feel like myself again. I am in remission and I feel amazing!

–How have you dealt with having multiple autoimmune diseases?–

Before I was in remission, every day was a battle. I had to make major adjustments to my life to simply get by. I learned that I couldn’t always say yes to everything. I often had to miss a friend’s birthday or a dinner out with family because my body was too exhausted to do anything but sleep. I adjusted my diet to avoid inflammatory foods. I put myself first and ensure that I get at least 8 hours of sleep every night and get to the gym to keep my stress levels in check. But most importantly, I have become an advocate for autoimmune diseases. That is primarily how I deal with the life changing cards I have been dealt. My diseases have given me a purpose. And my purpose is to fight for every person who is battling an autoimmune disease. To give them strength, to give them hope, and to fight for a cure. –Lilly

Lilly has been diagnosed with Crohn’s Disease and Psoriatic Arthritis. She is now an advocate for autoimmune disease leading her 50 cents for 50 million campaign.

Although perfectly normal on the surface, no one would suspect that Lilly has multiple autoimmune diseases. The doctors even refused to believe she was genuine. As Lilly’s story gives us an inside look at the struggles of an autoimmune disease – physically and emotionally – we need to work together to obtain a widespread awareness of struggles like this one. By doing so, we can possibly shorten the diagnosis process, implement integrative medicines, and raise national funding to autoimmune disease. We need to make this invisible disease visible!

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Edited By: Tiffany Simms

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