Being a “Sick Chick” isn’t always rainbows and butterflies. It’s a constant fight with many victories and many defeats. We grow from the challenges and blossom from the victories. I view my illnesses just as dragons I have to tame.
Living with Ehlers Danlos syndrome and related comorbidities life can be quite crazy, but also quite interesting. As an advocate for rare diseases, I think it’s so important to educate people and make connections on this journey.
One person who I wouldn’t have connected with without my disease got me a job on Ariana Grande’s music video set for “Thank U, Next.”
My mom is a creative director for a magazine and she had a photoshoot with a woman who is a music producer. The woman had to keep postponing and mentioned she was in the hospital. Being her shy self -- NOT -- my mom asked why. The lady then said she had a rare disease called Ehlers Danlos syndrome. My mom then started laughing over the phone, leaving the lady very confused. What a small world, right? My mom explained to the lady that I had the same rare disease.
One day, my mom got a call from this woman saying, “Hey! Your daughter just booked her first job!” My mom was flabbergasted, but excited for me, while I was anxious not knowing what to expect. Usually when you book a music video you are excited, this was not the case for me.
I was overwhelmed. Thinking to myself…
“How am I going to make it through a twelve hour day?”
“What if I start to swell up?”
“How am I going to stand all day, will I be able to sit down?”
“Will I be able to eat the food provided on set?”
“What if I am too tired to drive home after the shoot?”
Because of everything I have gone through medically, I fear the unknown. So the night before the music video I was glued to my phone to find out the call-time, the exact location, and what clothes I needed to bring.
The production team only gave me limited details because it was “high-profile,” which didn’t help lower my anxiety and in turn caused my symptoms to flare.
Finally, the big day came:
It’s Monday morning and my alarm just went off, it’s a quarter to six. I get ready, pack my gluten-free snacks, say bye to my fur babies (my dogs), and take off for Culver City. After sitting in LA traffic for an hour and forty-five minutes, I made it to set. I am one of the first people to make it to set. Standing around with a bunch of people I don’t know, I channeled my mom and thought what would she do in this situation. She would not be shy. She would go up and talk to some random person becoming best friends with them. So that’s what I did. Making friends lowered my anxiety, I didn’t feel alone anymore. On set, I decided that I wasn’t going to tell anyone that I had a rare disease because why does it matter. My disease doesn’t define me.
The extras continued to stand around waiting for more people to show up. I was starting to get tired and wondered if I was ever going to be able to sit down. Five minutes later, the production assistant took all the extras, including me, over to holding, which in this case was a high school classroom. Once we all sat down, FINALLY, she announced that we were here to help produce Ariana Grande’s new music video. The room got extremely quiet, we were all in shock. This is not what I was expecting at all. I thought I was dreaming. The production assistant then left the room and these crazy dressed individuals came in. They were stylists, here to transform our looks throughout the day. The stylists were very particular about what the extras could wear for certain scenes. I think I changed clothes thirty times total, it was exhausting.
All of the scenes that I had shot so far involved me standing. My feet started to swell, turning red and purple. The swelling was inching up my legs. Thinking to myself, what if the director sees my legs and tells me she can’t use me in the shot? I knew that if I stressed about it, it would make the swelling worse. While thinking of ways that could help my swelling go down, biofeedback came to mind. I slowly started to breathe and the swelling started to go down -- I guess five years of biofeedback finally came into handy!
It was five o’clock and we were still shooting. The production team decided to push back lunch and that was not good news for me. I was becoming severely fatigued and needed to eat and rest for just a couple of minutes. Thankfully, after the hallway scene, the production team decided to take a break!
As I headed outside, I started to think about the types of food that were going to be provided. Having Celiac disease and Gasteroparesis, I knew that I wasn’t going to be able to eat much. They had a salad bar, which people were super excited about. Not being able to eat much fiber, I was not excited about the salad bar. Onto the next table. This table had seasoned meat, which was a no go for me, there was also mashed potatoes and broccoli. I decided to have some mashed potatoes because I knew those would be safe. So while everyone was eating full on meals, I was the girl basically eating nothing, which made me once again feel isolated.
The only thing getting me through the day was being able to work next to Ariana and the people she brought in to make a kick ass music video. Getting to work with Kris Jenner, Troye Sivan, Stefanie Drummond, Colleen Ballinger, Gabi DeMartino, Jonathan Bennett, Matt Bennett, Liz Gillies, and her awesome production team made my fatigue fade away.
Kris Jenner was actually a surprise to all the extras. She was a special guest that Ariana brought in for the Christmas scene. When I found out that she was going to be on set, I was freaking out. No one else was, this wasn’t their first rodeo. Kris brought so much energy to set and that was needed as it was getting late. We wrapped this scene at around 9:30 at night.
Only ONE more scene to go! This time it was going to be outside… For being in California, it was pretty cold and since I have poor circulation, I was concerned about how to stay warm. I only had two light weight jackets and decided to wear them both, no matter what the stylists said. My health comes first.
The whole production team and cast was now out on the field at 10:30. I never thought that I would actually work over the twelve hours I was hired for. Sitting on the cold bleachers, my joints started to ache. I was wondering when I was going to get to go home. I still had an hour drive home and class in the morning too. Production finally wrapped at midnight, but my parents were worried I was too fatigued to drive home, so my mom and brother drove to Culver City and picked me up. I had been on my feet since 8:30 in the morning and words cannot explain how exhausted I was.
This was a once in a lifetime opportunity and I made the best out of it. Just because I have a chronic illness doesn’t mean I can’t do things; I just have to modify them to fit my needs. Just take it one day at a time and live life to the fullest, that’s all you can do.
Thank U, Next.
Sarah Rightmire is an Orange County local who is a fighter, psychology student, patient, and advocate for zebras. You can keep up with her at @sarahrightmire on instagram.