Still's Disease: A rare inflammatory disorder that affects the entire body, causing episodes of high fevers, a pink or salmon-colored rash, fatigue, joint pain, muscle pain, and other symptoms that affect the whole body. For most, Still's disease is probably something you would hear and say, "What's that?" However, in my case, it's personal. September 7th is Still's Disease Awareness Day. While I know that the date has passed, it's never too late to discuss Still's and inform other people of this terrible disease.
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On June 19th, 2017, My best friend and self-proclaimed wombmate was diagnosed with Adult-Onset Still's Disease. A disease that took everything out of her. A disease that simple tasks, such as going to class or work, would make her feel like she just ran a marathon. A disease that made her unable to even lift her head out of bed some days. The relief that I felt when I heard that she finally had a diagnosis what a feeling I've never felt before, but I've never felt anything like it before. Everyone was so relieved that we finally knew what was causing her all this pain, but getting to the diagnosis was a long and tiring journey. Watching my best friend, who might as well be my biological sister, endure all the doctor's visits, ER stays, blood draws, and multiple medicines reassured what I already knew about her. I've always thought she was the strongest person I've ever met, but I stood and watched her during this trial in amazement. She never once stopped fighting. She never once stopped looking for an answer.
She never gave up.
On her journey to getting a diagnosis, she saw many doctors who thought they had the answer, but inevitably they were wrong. One wrong diagnosis, in particular, hit me like a ton of bricks and I'll never forget that feeling. I remember that I was sitting at work and I saw a text on my phone from my wombmate.
"They think they've figured out what's wrong and when I tell you, you can't freak out."
Cancer. While anyone else would freak out, she was calm. I tried to remain calm and I did for a while until reality set in that my best friend and one of my favorite people in the world might have cancer. I sobbed. I couldn't hold it together anymore. I knew she was strong and she could handle it, but no one likes to hear the word "cancer." After a biopsy, cancer was ruled out, and while we're relieved, we're back to square one not knowing what is causing her to be so sick that she can't get dressed, or even take a sip of water by herself.
In mid-June, she and her family went to Vanderbilt University Medical Center. When she told me she was going, I remember praying so, so hard that this would be it. I prayed that this trip would be the trip where all the confusion stopped and we finally got an answer. I was in the process of redecorating my bedroom when I took a break and check Facebook to find a post from her mom that said, "Well we have a diagnosis, McKenna has been diagnosed with Still's disease!"
From that day forward, She fought Still's like a champ and has never let it stop her from doing what she wants to do. Even on the tough days, she still gets out of bed and goes to class, work, and events like a normal college student. She may have Still's disease but Still's disease does NOT have her. I'm so proud to be her best friend and watch her battle this disease with grace. I always knew she was strong, but the past year has shown me just how strong she really is.
When she was diagnosed, I knew nothing about Still's. I'd never even heard of it. So we asked a group of people on Facebook that have Still's this question, and here is their response.
"If there was one thing you wish people knew about Still's disease, what would it be?"
"The fatigue can be worst than the pain sometimes."
"Just because I'm not swollen doesn't mean I'm not in pain."
"There is a constant pain and damage being done inside our bodies that you can't see."
"When you have a flare up or not feeling great sometimes, there is nothing you can do about it and you just have to ride it out."
"it's not just arthritis."
"The unpredictable nature of the disease is not my fault."
"We are just as upset as you are that we are too sick to do anything."
"How I look isn't how I feel."
"It is systematic. We can have good and bad hours on the same day."
Still's is rare, but it's not a disease that should be put on the back burner. No disease should ever be put on the back burner, but this one hits a little close to home. I hope that the next time some tells you that they are sick, you truly believe them and don't assume that just because they don't "look like it," they aren't really sick.
My best friend's fight may not be over yet, but I know she's going to fight with grace and dignity and I'm so proud to stand by her side through it all.
