patient stories

Forced to Slow Down: Living with an Invisible Disease in College

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Briane has fibromyalgia and is currently a UCLA student who started up a community group called You Are Not Alone. Her story chronicles the challenges of an invisible disease; if she had known about fibromyalgia earlier, perhaps she could’ve prevented the intensity. Yet, despite all the pain and cut backs from fibromyalgia, her perspective became more positive, brought her closer to her family and friends, and has led her to see “much more value in the things and people” around her.

“About 3 years before my diagnosis my parents told me to be grateful I didn’t have Fibro. It’s kind of ironic looking back now lol.”

–Did you see your autoimmune disease “coming” – any signs/hunches?–
Since Fibro is usually triggered by a traumatic physical and emotional event at a young age, there were many signs foreshadowing my current health. I had an experience in high school that still haunts my dreams today. It started my freshmen year and I finally got out of it 2.5 years later. Around that time I started to notice that at night my feet would turn bright red and heat up to the point that they felt as if they were on fire. When I came to college it spread to my hands and my speech began to get sloppy as I would mix up letters which never happened before.

Summer of my junior year I started to notice that my whole body would feel stiff and tired, but I didn’t make the connection until I was in a dance class one night and all of the sudden both my legs were in such excruciating pain that I couldn’t even lay without crying. That’s when I noticed that my feet and hands were inflamed and hot at the same time. In that moment I knew my mystery condition had spread. At this point the pain is a whole body experience, luckily I have great doctors and am getting used to it by now!


–How has your life been/changed since having an autoimmune disease?–
My life has been flipped upside down.

Before being sick I always felt on my A game. I was earning 2 degrees in subjects I was passionate about, I was a part of 3 student organizations on campus and my social life was non stop. My disease took years to progress into what it is today and over the years as I got more sick I was forced to pick my health first.

I dropped one major and dropped every organization I was a part of on campus.
I lost countless friends who couldn’t or didn’t want to handle my situation.
I was forced to grow up which luckily brought me closer to my family than ever, but was the pit of my days besides that.

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The greatest silver lining of this situation is how much I have grown since getting sick. My perspective on life is so much more positive and I am always ready to make the most of every moment that I can. I see so much more value in the things and people around me. Sometimes I am weirdly thankful for Fibro because while as awful as it is, I am a better person than I was before getting sick and this has driven me into the arms of the best friends and family a girl could ask for!

–What do you wish your doctor knew? Do you wish he/she did something differently?–
There is little any of my doctors could have done differently. I wish I could change the whole process and would have found my current doctors right away, but I can’t change that now. All I can hope for is that in the future there is more research done on autoimmune and chronic diseases so people like myself can get help more efficiently and effectively.

~Briane

Briane is one of the many young adults with an autoimmune disease compromising their lives. While she calls for more research, her story shows us a need for increased awareness and knowledge of autoimmune disease.

At Stanford Medicine X 2015, I presented real voices, like Briane’s, as a way to pinpoint needs in autoimmunity and shed more light on autoimmune diseases. Your story could make the difference. Help Us Help You by sharing your experiences with us!

Edited By: Tiffany Simms

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