Gretchen Quiteles

@gretchann20 | contributor
A 24 year old millennial tackling the world one flare up at a time.
Community Voices

Quarantine is giving me PTSD

In 2008 around the same exact time I was diagnosed with my chronic illness. After being in and out of the hospital, I had to stay at home due to fatigue and a weak immune system. It started in March and lasted until August. So this all feels too familiar.

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Gretchen Quiteles

Juvenile Dermatomyositis: Lady Gaga Helps Me to Speak Up About Illness

Many celebrities have been coming out about their chronic diseases and how it’s been affecting them in their daily lives. From Lady Gaga to Selena Gomez, these people have given me the courage to speak out to loved ones and acquaintances about how my body actually feels at that moment. How it’s not that people don’t want to know, they just don’t know. When I was diagnosed with juvenile dermatomyositis at the age of 15, I always felt as if I was a burden to people around me – my friends, family, teachers and peers. I felt as if I was only paid attention to when I was in a hospital bed, truth be told. I hated it. I was always in pain from walking up a step, speed walking to my next class and even laying down. But yet I never told anyone because I was always scared. I’d notice myself tell the nurse that on a scale from one to 10, the highest I’ve ever given was an eight. I never wanted to say 10 because I was truly scared to say I felt a 10. To this day, at the age of 25, I’m still scared. I’m scared to let my work know it’s been hard for me to get out of bed even though I slept eight hours, how little stressors can trigger anxiety and how I prefer to stay at my desk to rest than constantly get up to talk to colleagues. After seeing posts from Selena Gomez and Sarah Hyland addressing their condition in public, I was inspired and given the courage to speak up more. Which was why I wrote an article about how I ran a half marathon with my condition. Now Lady Gaga has given me the strength to speak up and let it be known that just because I look healthy doesn’t mean I’m not in pain. After watching her documentary “Gaga: Five Foot Two,” I felt extremely empowered. She let cameras into her life at her most vulnerable moments. I’m not talking about her relationship or career, I mean her health. The part we fail to look at when idolizing an artist. As I saw her crying in pain, I started crying because I’ve felt that pain before but I felt ashamed for feeling it. But here’s a strong, successful woman with this condition who is not ashamed. Who doesn’t let it stop her from being the beautiful woman she is, in and out. For that I say thank you, Lady Gaga. For 10 years I have been scared to let my boyfriend, mom, friends and everyone around me know that, “Hey, I’m feeling some chronic fatigue and it feels a bit rough today,” or even “I’m going to have to stay in this week to recharge my body.” Why I felt such a connection with Lady Gaga is because she’s doing so much with her life, which is why people accused her of lying and faking her fibromyalgia. I work full-time and I am a part-time student, in a strong committed relationship, a compassionate friend, loving daughter, athlete, runner, dog mom and more. Because of all those things I listed, which I’m incredibly proud of, I was scared to tell people I’m in pain, that I’m feeling fatigue. But thanks to Lady Gaga, I no longer am. It’s possible to have a chronic disease but also be your best self. And she helped remind me that even if you’re in pain and feel vulnerable, you’re the strongest monster you’ll ever know. We want to hear your story. Become a Mighty contributor here.

Gretchen Quiteles

Running a Half-Marathon With Juvenile Dermatomyositis (JDM)

Editor’s note: The following is based on an individual’s experience. Please consult your doctor before beginning new exercise or training programs. At the age of 15 I was told I wouldn’t have a normal life again. At the age of 23 I ran my first half-marathon. In spring 2008, I was diagnosed with an idiopathic autoimmune disease called juvenile dermatomyositis (also known as JDM). A disease diagnosed in children that can cause rashes, muscle inflammation and muscle weakness. When I received this diagnosis, I was in shock because I was only 15. The more I learned about my condition, the more I realized I wouldn’t be able to run, bike or swim anymore. From then until now, I went through multiple treatments and remedies to ease down the disease. I am happy to say it has been in remission for the past five years, with the occasional flare-ups. When I was told it was in remission, I wanted to prove to myself I was unstoppable, and that was when I decided to run the 2016 Disney World Wine & Dine Half Marathon. Prior to this race I had never run long distance but I believed I could accomplish this challenge. I started with precaution. I did proper research, from self-care to running tips. I made appointments with a pulmonologist to be proactive about my exercise-induced asthma. I reached out to friends who were runners and asked them for tips on clothing and techniques. After gathering all the information, I had to keep in mind I have a chronic disease. So I had to take proper precautions and ensure I took proper safety measurements. I used a calendar to track the amount of miles I would run until race day. I started in May and ended the week before my race in November. I would also sign up for 5Ks to test my progress in a race setting to prepare me for the actual day. Having JDM for the previous nine years, I knew which foods were good and bad for my body. I had to also ensure I had the proper diet to keep my body in shape for the race. I consumed more vegetables, fruits and whole grains in addition to my daily protein intake. I drank more water and electrolytes. I also picked up dietary supplements and ergogenic aids to help me with my training performance. I will say many emotions and thoughts went through my mind when I started training, where I’d compare my performance against people who have been running for years and didn’t have similar health conditions as me. It can either motivate or discourage you. When I felt discouraged, I found ways to turn it into positivity. One example was my belly pouch. I took prednisone when I got diagnosed and gained a lot of water weight. Since then I have struggled to get rid of my belly pouch, and I used that discouragement as motivation. By the end of my training my belly fat had decreased along with my waist size! On race day, I was anxious and nervous. I told myself it was just another day of training. With each mile marker I got anxious and experienced multiple panic attacks. I would hyperventilate the closer I got to the finish line. All I could think was “Wow, I did it” and “They said it wasn’t possible but I made it possible.” Crossing the finish line was one of the biggest accomplishments in my life. I finished with a net time of 2:33:16. The sense of accomplishment I felt could not compare to anything else. When the volunteers gave me my medal and congratulated me, I hyperventilated and cried. I was in disbelief and had to tell myself I actually did it – it actually happened! With the support of friends, family and my boyfriend (who did the race with me), I was able to accomplish this goal. And the constant encouragement from strangers and myself during the race helped make sure I crossed the finish line. When you research JDM, it can be described as potentially life-threatening. It is also known there is no cure to this disease. I was told I wouldn’t live a normal life again and wouldn’t be able to be physically active. It took a lot, but I did it. I still struggle every day with body aches, joint pains and fatigue. But when I look at how I was able to finish a half-marathon, I tell myself anything is possible. We want to hear your story. Become a Mighty contributor here.