Sarah's Story: Thank U, Next

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Sarah's Story: Thank U, Next

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.

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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.

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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.

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Kelly's Story: PCD Warrior

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Kelly's Story: PCD Warrior

October is Primary Ciliary Dyskinesia (PCD) Awareness Month, but what is PCD? PCD is a rare genetic disorder that causes missing or malformed cilia. Cilia are microscopic hair-like structures that help clean and filter the inner surfaces of the respiratory system, sinuses, ears, and reproductive system. So basically, I have no filter for my respiratory system! For this spotlight, I would like to share my journey so far with living with this disease.  

From the moment I was born, everyone knew there was something wrong with me; therefore, the first month of my life was spent in the hospital. I had a runny nose, a hard time hearing, and a serious cough. Then throughout the years, I was in and out of different doctor’s offices and they couldn't conclude what was causing my symptoms. Then after ruling out Cystic Fibrosis, my doctors gave up and convinced my mother and me that it was just asthma or allergies. Therefore, they told us that I would eventually grow out of it, which gave me hope of being “normal” someday. Unfortunately, the doctors were wrong and my symptoms continued to progress. I went untreated and undiagnosed for a long time.  

After a series of testing, a pulmonologist finally gave me the correct diagnosis of PCD. I can remember that day vividly, I remember asking him if I would still “grow out of it” because I was trying to find some hope. When he told me no, it felt like someone punched me in the gut. I tried to fight the tears and the reality of having to deal with this the rest of my life. I mourned the fantasy of living a life without being sick. I just wanted to be "normal.”

Despite getting my diagnosis finally, my disease was still not being treated properly. When I was 11 I ended up in the ICU in Long Beach Miller Children’s Hospital. I can remember spending 3 months in isolation, 3 months of being observed by strangers behind masks, and 3 months of losing hope. However, during this time, I met Dr. Randhawa. He was the only doctor who had the confidence to do anything about my situation. It’s safe to say, he saved my life.

All the years of having reoccurring pneumonia and bronchitis destroyed the right lower lobe of my right lung. That area became so scarred and infected that it was non-functional. My doctor tried to save my right lung with 2 years of in-home IV antibiotic treatment through a PICC line. But this didn’t work and so I was sent to CHLA to have a lobectomy (partial lung removal) at age 15. I’m proud of the scars that I have from that day; it reminds me of how strong I am capable of being. In fact, I’m proud everything PCD has put me through no matter how painful it was. 

It took me a while to learn that my illness does not define me.

I finally accepted the fact that I would never have a "normal" life. I looked up normal in a dictionary and it was defined as “the usual, average, or typical state." When I was younger, I wished to be average for years. But I'm happy my wish never came true because I am more than just average. After my lobectomy, I made a promise to myself to never let my illness define me. I didn't wish to be average anymore, I wanted to be more than that. Therefore, I stopped making excuses and chased after anything I had an interest in. I learned how to play the cello, I learned how to speak 4 different languages, I learned Archery, I practiced martial arts for years to learn how to kick ass, but most importantly, I decided to major in Biology. I want to be the doctor I wished I had when I was younger before meeting Dr. Randhawa. I want to be a doctor that doesn't give up on their patients. I want to help people diagnosed with PCD, but ultimately, I hope I can find a cure for PCD or contribute to an alternative treatment that is better than what we have now. When I was younger, I was told I wouldn't live past 18. I am currently 21 and continue to live my atypical life. However, I am not the perfect person. I have failed numerous times; whether it's in school or in my hobbies. But one thing I learned was to get up and try again. I learned how to keep going whenever my life got tough. I don't want someone to remember me as a girl with PCD, I want to be remembered as a warrior that made a difference in our world. I hope my story can inspire you.

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Kelly was raised in Southern California and is currently a college student majoring in biology. As Kelly says, “I love to prove people wrong and I am a realist, but most importantly, I am a fighter. I have PCD, but PCD most certainly does not have me.”

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Nicole's Story: Making the Breast Out of a Situation

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Nicole's Story: Making the Breast Out of a Situation

I read Angelina Jolie’s 2013 New York Times article about her preventative mastectomy and the “BRCA gene” thinking, “Wow, how brave!” It was the first time I’d heard about the BRCA gene. Who knew, 5 years later, I’d be doing the same.  

My grandma died of breast cancer when I was 13 so I was no stranger to cancer. But it felt like a one-off because after my grandma, I didn’t know anyone else who had cancer.

January of 2014, I got a phone call I’ll never forget. I could tell something was up because my mom went silent as soon as I answered. "It's cancer. Stage IV," was all I remember my mom saying.

A few weeks later, I flew back home to Texas for my dad’s surgery to remove the softball-sized tumor on his colon and went with him to his first chemo treatment. That first treatment was rough. I’d never seen my dad so sick. There’s no other way to describe it other than feeling helpless and wishing you could make it go away.  

As it turns out, my dad carried the BRCA-1 gene. And then my sister tested positive. 50/50 chance I carried, it too.

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I procrastinated, i.e. avoided, getting tested for a year. In my gut I knew. When my doctor sat me down to tell me I was BRCA-1 positive, I was already prepared for it. I knew what my options were: surveillance or preventative surgeries. But I felt so isolated and alone. It felt like my family and I were the only ones dealing with this.

Another year passed before I began weighing my options. Within that year, my grandfather – dad’s side again —was diagnosed with colon cancer. Family history of cancer: check! Another gut feeling hit: surveillance wasn’t an option. I couldn’t imagine having to make the same “It’s cancer” phone call to my mom.

I began researching preventative mastectomies. I figured as long as I have the information, I could make better decisions. I found an Instagram page run by Paige More, with whom I’m now friends, detailing her own BRCA-1 journey. She, too, decided to go the preventative route and had a double mastectomy. Paige later went on to co-found The Breasties with three other women, a mix of survivors and previvors (people who haven’t had cancer, but take preventative measures).

And let me tell you, I no longer felt alone. This community of women shared stories like mine. Loved ones lost to cancer. Surgeries both preventative and not. Thanks to this community, I felt empowered in my decision to move forward with preventative surgery.

May 18, 2018, I said farewell to my breasts and underwent a nipple-sparing preventative double mastectomy.

I called my dad the day after my surgery. He was back home starting up on chemo again as his cancer had returned. He said how proud he was that I had undergone the surgery. I gave him the news that pathology came back negative. I could hear the relief in his voice as he told me, “Everything will be ok.” Those were his last words to me.

That night, my dad’s health took an unexpected turn for the worst. He went into the ICU the next day and my mom flew back home a few days after that. A week later, my dad was gone…

I don’t think I ever could’ve prepared myself to recover from a mastectomy while grieving the loss of a parent at the same time. I was restricted from flying home due to two surgical drains attached just below my armpits. With my mom gone, my friends and coworkers rallied around me, bringing me food and stopping by to check in. The Breastie community came through by way of Hilary, a fellow Breastie whom I’d never met before, knocking on my door to help me out. I learned to lean on others. Ask for help. Be vulnerable. And in those moments of vulnerability, I gained so much strength.

I recently received another of “those” phone calls. “There’s a small mass on your left ovary.” Despite rocking fake boobs, or foobs as I call them, I’m still high risk for ovarian cancer. And unfortunately, screenings for ovarian cancer are far less reliable than those for breast cancer.

With my stats and options laid out by my doctor, I’ve decided to remove my fallopian tubes. While not directly related to my left ovary, current research has found that many BRCA-related ovarian cancers begin in the fallopian tubes. But removing my tubes means I won’t be able to have kids. And no, I don’t want to retrieve eggs and do IVF, though those options were presented to me. However, that doesn’t mean I can’t be a mom. I’m very open and considering adoption in the future.

Making decisions as a previvor aren’t easy. Weighing the pro’s and con’s. Getting insurance approval. Dealing with the mental aftermath. All of these things weigh heavily on us and are very personal decisions.

But there’s a sense of empowerment in being able to take charge of my health. “You’ve done your research and you’re facing things head on,” my doctor told me. I am very thankful I’ve been able to do things preventatively, as I know so many women, many of them friends, didn’t have these options.

I won’t know what this “mass” is on my left ovary until my exchange surgery on November 6th. But I’ve made it through so far. One day at a time. I have my Breasties, my friends, and my family supporting me. And like my dad said, “Everything will be ok.”

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Nicole Garcia is a 30-year-old Texas native-now-LA Transplant who’s passionate about media, food, health, and fitness. As a Post Production Manager, she helps create drama on “Vanderpump Rules”.  Using social media as her platform, Nicole helps bring awareness to the BRCA gene and encourages self-advocating for women’s health and wellness. You can find Nicole on instagram at @nicelygarcia.

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Amy's Story: Most Bonkers Movie Disease

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Amy's Story: Most Bonkers Movie Disease

When Your Rare Disease Hits The Big Screen

I have Xeroderma Pigmentosum (XP). It affects about 300 people in the United States. Imagine how surprised I was sitting in a dark theatre and seeing a trailer for the movie Midnight Sun, which features Katie (played by Bella Thorne), who has XP. My sister immediately started tapping me and saying, “Oh my god, this is you!” My world started turning upside down. This disease that I knew about from the inside looking out, was suddenly being observed from the outside looking in.

At first, I didn’t know how to feel about this. But, I tried to keep an open mind. Now that the movie is out, I have learned that there are some pros and some cons to having your rare disease in the spotlight. Here are some examples:

Pro—A movie can bring a lot of awareness to your disease. You hear it talked about in interviews and read about it in magazines. It feels good to know that people are finally interested in what you are going through.

Con—Only some parts of way the disease is portrayed are true. Other parts are exaggerated, or just left out. I think they do this to make the characters more relatable, but it also makes the story less real.

Pro – In this movie, Katie had good friends. This shows that you shouldn’t judge someone by their disease or make fun of them. They are worth getting to know.

Con—Showing only parts of the disease can reinforce stereotypes, which might make it harder for real people with the disease to be understood or make friends.

Pro—A film can show how a person with a rare disease might feel, and that they want to experience the same things in life as others do – like finding love and having dreams and ambitions.

Con—The character probably has to die in the end.

I thought Midnight Sun was a sweet love story. I liked that Katie helped her boyfriend, Charlie (played by Patrick Schwarzenegger), achieve his dreams, while he also helped Katie achieve hers. She wasn’t just the sad “sick chick,” or an object of pity. The XP in the movie was very exaggerated. It made it hard at times for me, as someone with the disease, to follow the story line because of the inaccuracies. Those were also the parts that made the audience cry, which was a little strange for me. I did like the movie, though, because the relationships were relatable, and it was good to see that Katie was just a normal girl. Her XP wasn’t the most important thing about her, and it’s certainly not the most important thing about me.

One unexpected thing was seeing how other people reacted to the movie. I have read a few reviews that criticize the movie for objectifying people with the disease. They say how bad it is to turn an “awful” disease like XP into entertainment. The thing that’s strange about that is the reviewers don’t really try to understand XP either. For instance, one review said Midnight Sun “wins the award for ‘Most Bonkers Movie Disease.’” Another says, “What’s hot: The fact that Katie might die if she’s exposed to sunlight.” Many use words like “freakish disease,” “sufferers,” and “victims.” I am not a freak. I don’t suffer with XP, I live with it. And, I’m definitely not a victim. Using words like these may be even more harmful than anything in the movie itself.

As you can see, there are positive and negative sides to having your rare disease shown on film. I think people should keep in mind that there is a big difference between what is real and what is a movie. Writers, directors, and even reviewers should access reliable sources, instead of just stopping at the first thing they read on the Internet. If someone really wants to understand a rare disease, they should talk to talk to people who have that diagnosis. Include them in making the movies; let their voices be heard and their stories be told. Let the person with the disease be her own hero. And next time, please let the girl live.

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Amy "TitaniumAmy" Hansen is an Ambassador for Best Day Foundation, which takes youth with disabilities on action adventures, and for Positive Exposure, which utilizes the visual arts to bring humanity and dignity to human diversity.

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Megan's Story: Finding Faith

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Megan's Story: Finding Faith

I was raised in the Church of Jesus Christ of Latter-day Saints. For as long as I can remember, I was taught that I was a Child of God, that the Heavenly Father loved me, that life had a purpose and a plan, and that my worth was divine. But that knowledge and those answers weren’t truly mine until I became sick.

When I got sick, for the first time in my life, I questioned my faith.

I questioned if there was a point to this life, if my pain could have a purpose, and why bad things happened to good people. I questioned if God truly loved me, (because if he loved me why would he let me be so sick?) if my illness was some sort of wrath filled punishment, because I wasn’t “good enough,” or if He just didn't care that I suffer. I honestly got to the point where I questioned if there was even a God at all. 

As I began this eight year long quest to find a diagnosis, I went on a simultaneous one to find/ get to know God. And even though I am still in the thick of trying to find a diagnosis, I have most definitely found God along with the answers to those spiritual questions I had been yearning for .

The thing is. when it comes to Faith, the evidence will never be “concrete.” There is no blood test, imaging, or EKG that will tell you God is real, life has a purpose, and that your faith is worthwhile. Because that “evidence“ and that faith, comes through experiences and feelings. And once I experienced them, there was no way I could ever deny them.

For example, the day I truly learned that there is a God, and that he loves me limitlessly, was the exact same day I convinced myself he truly must not exist: the day before I was given my first NJ tube. 

I remember lying on that hospital bed, feeling like I could honestly die in that ER bay.
I remember over and over telling myself, that God must not exist, because someone all powerful who supposedly loved me would never let me feel like this! My hope was gone, my faith was demolished, my body was just barley hanging on, and my world had never felt so dark. But a still small voice kept gnawing inside of me, begging, and pleading me to pray. So, with nothing to loose, I bowed my head and absolutely poured my whole soul out in prayer. I felt this warmth, and this love that I had never felt anything like before. It was like all those parts of my soul, that were so black, were all the sudden bursting with light. And even though I had never been so physically weak, that week and a half in the hospital, I was able to move forward with a strength that most definitely wasn't my own. 

Funnily enough, it seems like all of my major “ faith affirming moments” have happened in a similar way. My most fervent prayers have been said and answered while lying in an MRI bed and I discovered the purpose to this earthy life, right before I was wheeled into a surgery that could have ended my life.  Another time at the Mayo clinic, when I honestly didn't have the physical, emotional, or mental strength to move forward, and wanted to return to my heavenly home I was given, strength, hope, and quite honestly angels, while sitting in a tiny little hospital chapel. 

I believe that whether your world is full of darkness, or bursting with light, that God is there, cheering you on, mourning when you mourn, and standing there with arms wide open, just waiting for you to come to Him and ask for His help.

Some people have told me that their trials, and especially their illness, has destroyed their faith. However for me it is through the experiences I’ve had because of my chronic illness that I have found the answer to every single one of the questions I had when my health “journey” began regarding faith. And I can honestly say without my faith, I wouldn’t be who I am today, and I honestly don’t believe I would even be here today .

I will never be grateful for my illness, but I will always be grateful for the hope, strength, and most importantly the faith it led me to finding. 

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Megan is a 22 year old professional patient from, as she says, a small town you have never heard of. She loves animals, service projects, singing, writing, food, and is obsessed with unicorns. She has found my passion in writing and sharing my journey with chronic illness. Follow her at @thelifeofmesmilemagee on Facebook, Instagram, blogger, and YouTube.

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Alexa's Story: The Light At The End Of The Tunnel

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Alexa's Story: The Light At The End Of The Tunnel

 Trigger Warning: This Spotlight posts discusses disordered eating 

Hey hi hello! My name is Alexa, I’m a plant eating, loud mouth, unfiltered feminist. My interests include touching peoples’ faces (I’m an esthetician in training) and talking about my feelings (I have a lot of them). 

Just recently my favorite week to over share occurred. That week would be National Eating Disorder Awareness (NEDA) week. I was taking a break from social media at the time due to my own struggles, and it was such a weird feeling not being able to participate.


It’s been a long time since I was at my worst, and every year I would sing the praises of recovery. I would be bubbling over with gratitude for my health and mental wellness. Most NEDA weeks have been a time to reflect on my progress, but this time I was restricting and hating myself instead. 


The worst part of recovery is that sometimes, even years later, you still miss being sick. I feel like such a hypocrite sometimes because I want to give up. Fighting is hard. I get tired. I want to wave my white flag and surrender to my disordered habits, and sometimes I do. Recovery isn’t easy. It’s not a pretty package tied in a bow handed to you upon arrival at your first outpatient therapy session. It’s more like a damsel locked in a tower that you have to hunt down. Then once you find it there are like three dragons you have to fight, sticker bushes to crawl through and a five mile walk up hill before you’re even close. It’s messy and beautiful and scary, but most importantly it’s worth it. I went into NEDA week restricting and slipping back into disordered habits, but I ended it eating crepes and macarons with my boyfriend and my family. Those days make it all worth it. Sometimes it feels too hard to carry on, but when you push through there truly is a light at the end of the tunnel. 


I’m so proud of how far I’ve come and I’m thankful that I can be honest about when I’m struggling. I hope that creating a space to be real about where we’re at in recovery, to not be afraid to really talk about things, will help to end the stigma around eating disorders. I hope that no matter your age, size or gender you know you are not alone.

Alexa is 22 years old, and studying to become an esthetician at Evergreen Beauty College. She was called to the beauty industry by her love of making women feel beautiful, inside and out. She has been a mental health advocate since high school, and hopes to see the stigma surrounding it disappear as more people open up and share how they're feeling. You can follow her on twitter at @lexlove__ or on instagram at @lex.triplett. 

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Taylor's Story: Remember The Girls

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Taylor's Story: Remember The Girls

My name is Taylor Kane. I’m a rare disease advocate, passionate feminist, and
lover of pizza with ranch dressing. When I was five years old my dad passed away from a
rare, deadly genetic disorder called Adrenoleukodystrophy, or ALD for short. ALD
primarily affects males and results in severe neurological impairment, ultimately resulting
in death unless diagnosed and treated before symptoms develop. ALD affects people
differently, but in my dad’s case, he lost his ability to talk, walk, swallow, and understand
what was going on around him. Some males with ALD also experience vision and hearing
loss.

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ALD is an x-linked disorder which means it manifests on the x-chromosome. Since
males (XY) only have one X chromosome and women (XX) have two, my father
unavoidably passed the ALD gene to me, making me a carrier of the disease. ALD is
known to be a recessive disorder, which typically means that carriers are completely
asymptomatic. However, for ALD and a number of other x-linked, recessive, genetic
disorders, it has been determined that carriers often do develop symptoms of the disease,
ranging from mild to severe. In fact, with ALD, recent studies have shown that over 85%
of female carriers eventually develop symptoms, which can include difficulty walking,
bladder and bowel dysfunction, and even cognitive impairment. There has not been
sufficient medical research or attention with regard to the physical symptoms developed
by x-linked carriers or their treatment, and in many cases the symptoms women carriers
face are overlooked or misdiagnosed by the medical profession. Thus, many carriers
themselves have no idea their symptoms are related to the disease they carry.
As a passionate feminist, I am well aware of the fact that males have traditionally
come first when it comes to research and medical treatment. Our symptoms oftentimes get
brushed off as PMS or anxiety. To me, the most nerve wracking part about being an ALD
carrier is the fact that there are no known measures I can take to prevent these symptoms
or treat them if or when they arrive.

In addition to physical symptoms, female carriers have very little support with
regard to difficult decisions they must make concerning their reproductive options. All x-
linked recessive carriers have a 50% chance of passing the defective gene to their
children. Since ALD is such a horrific disease, If I decide to have children in the future,
the route I will take to ensure I have healthy children is in vitro fertilization (IVF) with
preimplantation genetic diagnosis (PGD). This would allow me to have children who are
completely free of the defective ALD gene. Unfortunately, many states do not require
insurance companies to financially cover this procedure, and as it is extremely expensive,
many women carriers are simply unable to afford it and are left with a very difficult
decision: whether to risk having a child with a severe genetic disease or to give up their
dream of having biological children.

Being a carrier of an x-linked disease can be incredibly isolating. However, I have
been fortunate to have met and formed relationships with so many brave carriers of ALD
and other x-linked disorders, and that has made me feel much less alone in this journey. It
has also spurred me to take action. Last year, I created a 501(c)3 nonprofit organization
called Remember the Girls, to raise awareness of the issues we as carriers, face. I hope to
continue to build Remember the Girls, and create an coalition which unites female carriers
of x-linked genetic disorders and raises awareness of their unique and pressing issues. As
carriers, we deserve to be seen, we deserve gender-specific research, and we deserve to be
able to afford to have children without the fear of passing our disease on to them.
Although I am unsure of what else the future holds for me, one thing I know for
sure is that I will spend the rest of my life advocating for carriers, rare disease patients,
and their families.

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For more information, go to rememberthegirls.org, request to join our closed
Facebook group and/or follow me on Twitter & Instagram @taylorkane23.

Taylor Kane is an undergraduate student at The George Washington University majoring
in political communication and minoring in women’s, gender, and sexuality studies.
Taylor has been an ALD advocate for as long as she can remember, and is excited to be
working with and fighting alongside carriers of ALD and other x-linked disorders. Her
Twitter & Instagram handle is @taylorkane23.

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Amy's Story: Turner Syndrome

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Amy's Story: Turner Syndrome

My name is Amy Cimorelli; I am a singer, sister, daughter, painter, hopeless romantic, and horrible speller. (I love to write, but hate to spell.) I am part of a band with my five sisters and sing on the internet for a living! 

February is Turner Syndrome awareness month and I was asked to share my story. Turner's basically means that I have a problem with one of my X chromosomes. It impacts one of every 2,000-2,500 girls. I was diagnosed with a mild form at nine after four years of trying to figure out why I was not growing. Despite having a mild case, Turner's is still literally written into my DNA and because of that has managed to weave itself in as a big part of my story. 

I recognize that I am a conformist to the core, and because of that I do not relish in excess attention and am usually scared to put myself out there. It is a fear I've had to learn to live with though as I grew up very differently from most people being a part of a giant, close-knit family who always arrived to church twenty min late. I've spent my life constantly being compared to my sisters, and being different from my sisters was one of the hardest things to wrap my head around

I thought being different was a liability, something inherently wrong that would make it so I could never belong. I didn't know that the only way to belong was to be 100% myself. 

It is my firm belief that no one gets through life without having to deal with intense struggles. If it isn't physical then its emotional, spiritual, financial, or something else entirely. We are defined by how we react to adversity, it makes us who we are. It is in our nature as humans that we are not meant to live lives devoid of pain or weakness.

It took me a long time to realize my body didn't betray me by having Turner's. Turner's doesn't define me. It is not my identity. It is simply a part of me that I have no control over and have learned to love and accept. I had to literally make a peace treaty with my body. I had to forgive it for being born with imperfect DNA. I had to realize it wasn't a liability. I had to realize that my body and life are a gift from God. Once I got into that frame of mind, I realized how much I had mistreated myself all of these years. I wasted so much time being hard on myself. I used to disown the messy parts, but for better or for worse, my story is made up of the negative AND the positive. I'd try to tuck away and forget the imperfect parts even existed, but they were always there, lurking in my mind always threatening to come out of the shadows. Once I took ownership the light was no longer scary. 

We only get one life, and I'm not going to waste it being at war with myself. I hope you make that choice as well. 

 

Amy Cimorelli is a musician in the band Cimorelli, where she and her sisters do original music and covers. She is a devout Catholic and even though she is originally from the West Coast, identifies as a Southern-country girl at heart. You can follow her at @amycimxo on Instagram and @amycim on Twitter. 

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Christa's Story: Turning 18 In A Psych Ward

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Christa's Story: Turning 18 In A Psych Ward

Trigger warning: This Spotlight post deals with mental illness, suicidal ideation, self harm, and hospitalization in a psychiatric facility.  

I like to think that I’m usually polite. I use sir and ma’am, I smile and greet people as they walk by. But on my 18th birthday, everything in me wanted to lose it when anyone told me happy birthday. I wanted to snap back “I am not happy. Today is not happy. This is not happy!”.

You see, I turned 18 years old in a psych ward. One day every little thing I did had to be approved by one of my parents, and the next morning I woke up with a bucket of a new type of R&R (responsibility and reality) dumped on my shoulders. You know those “you’ll be an adult soon, get it together” lectures that every teenager gets as they’re turning 18? Those are quite interesting in a psych ward, but you can not get away from them. Anywhere. You can’t leave. They follow you, constantly. Sometimes it’s patients, sometimes it’s staff, but they never leave.

For the record, I was also sick and suicidal on my birthday, but I did not snap at anyone all day. I had a few panic attacks where I essentially snapped at myself, but still, I managed to smile and be polite and I think that’s reason for me to deserve a trophy. Just saying. I’m basically an Olympic gold medalist in politeness.

However, turning 18 in a psych ward gave me a unique perspective on how the mental health system in this country is structured. Quite honestly, I think that it sets teenagers and young adults up for failure in a few ways. I turned 18 on a Child and Adolescent Acute unit, and the day after my birthday I was moved to the Adult Psychiatric unit. These units were in the same building, literally just through a set of double doors. I continued to freak out for most of the day after my birthday as well, because I was scared or the change and everything I’d heard about adult psych wards. Providers put far too much pressure on teenagers with the frequent statements of “You need to do this now, or else…” “You don’t want to have this as an adult…”. If you can handle an adolescent psych ward, you can handle an adult psych ward. At least on the adult units, most of the patients are more mature than the adolescents. Most of them. Not all of them. But that’s true in society as well, so that’s a mute point, even if it may be a different type of immature than the average type you find in society. My first roommate on a psych ward was a sixteen year old psychopathic patient. I have yet to have a worse roommate in any facility, and trust me, I’ve been to a lot of them,

However, as far as that facility was concerned, one day I was a child, and 24 hours later I had magically turned into a full-grown adult. Thankfully, I was fortunate enough to keep my doctor and case managers, who were both absolute angels. I’d known my doctor for months through another facility, and she did a lot to try to make that transition as smooth as possible. However, my doctor was one of very few exceptions. I can count on one hand the amount of people in that building I truly trusted, and I was beyond fortunate that one of them was my psychiatrist, because she is the only psychiatrist I’ve ever trusted. That woman is an angel. But psychiatrists like her should be the rule, not the exception. Patients should feel safe talking to their providers. Facilities are there to provide tools to deal with stress, not add ways of increasing it.

Turning 18 was a transition for which I was horribly ill-prepared. Turning 18 in a  psych ward was even worse. While there’s obviously a legal aspect of turning 18 that happens to every individual, most of the time that doesn’t include having a new place to sleep at night, and not feeling safe in that place. Most of the time that doesn’t include having a lawyer come up to you unannounced two days after your birthday to ask if they can speak to your family. Most of the time it isn’t as drastic. The thing is, turning 18 shouldn’t feel drastic at all. Turning 18 should be a  celebration, an invitation to freedom, a one-way ticket to the ride of your life. For me, it felt like a death sentence. Everything was changing and out of my control. Life was a terrifying concept. I was being blamed for things that I couldn’t change. I was stuck between two frightening options, neither of which should have existed.

If it weren’t for my psychiatrist being so amazing, turning 18 would’ve killed me. My insurance had stopped paying, and administration was ready to discharge me, even though I wasn’t safe. Once again, the healthcare system really only cares about the money, and that’s not okay. That transition was not done in my best interest, and I am so lucky to have had a doctor who was acting in my best interest, because without her, I wouldn’t be writing this today.

So, I write this on behalf of the patients who aren’t as fortunate as I was. Turning 18 in the current mental health system is dangerous, and something needs to be done.

To the providers who truly care about your patients, thank you. Thank you for trying your best, sometimes even risking your jobs, to protect your patient and do what is right.

To the patients like myself, keep fighting, please. We have the power to make a difference. You’ll get through this. Trust me, if I can do it, so can you.

To everyone, please, consider what your patient needs. Listen to them when they try to advocate for themselves. We can fix this broken system. So, why not start now?

Christa Marie is an 18 year old mental health writer and advocate who lives by the motto, "This writer is a fighter." Some of her other works can be found here and you can follow her journey here

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Sarah's Story: Write What You Know

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Sarah's Story: Write What You Know

Everyone says "write what you know" and there's nothing I know better than pain. As I approach a decade of constant widespread pain and chronic illness due to hypothyroidism, fibromyalgia & endometriosis, my one mission remains: to write that pain. I don't think there exists any representation in media of what chronic pain and chronic illness really look like. It's my goal to change that.

As a chronically ill woman, I've found most opportunities in any industry just aren't available to me. After graduating college, I quickly learned that the disability resources I was provided there were beautiful, wonderful, and sadly quite unique. I've written a lot of standup comedy that has never been performed; there are no provisions given to sick people who can't sit and wait at open mics for 8 hours to do a bit. I love standup comedy, but I'm simply not built to do it as often as it requires, so I'm finding ways to incorporate it into my writing for film. Because of my lack of ability to hold more than a part-time job, finances also limit my opportunities greatly. There are no exceptions for missing work regularly, missing auditions, etc., so I had to get creative in order to create.

Luckily, I've found a home in writing and producing my own content, because most of that work can be done from my couch in my pajamas, where my heating pad, medicine, and cozy furniture live. I started with a comedy sketch about catcalling that I wrote and produced with a video sketch comedy group for iO comedy network. In a true sick girl miracle, that sketch actually caught the eye of a fellow actress and female filmmaker who I had met in a class at The Second City, Flavia Borges.

Flavia believed in my ability and talent without me having much experience and invited me to become a creator of a new indie series with her and another amazing actress/director, Devon Carson. Our project MENACE, a new series coming to Instagram this fall, is now in post-production.

MENACE is microseries told in 1-minute episodes on Instagram. That's right -- the whole series will be conveniently on Instagram @menaceseries! MENACE is a story about three women hiding out in a small apartment from the mass femicide raging through the country. Set in the near future, it imagines a United States where women's rights have  been further stripped away. We wanted to create three female characters that we wanted to see represented on screen: Ana, an undocumented immigrant struggling with body image as she desperately seeks a husband with citizenship; Daisy, a fiercely independent financial dominatrix; and my character, Jane, a recent runaway from her abusive husband. I felt passionately that I wanted to play a character in pain who is neither tragic nor without plenty of flaws.

 Devon, Flavia, and Sarah sitting in chairs laughing, looking off to the side holding notebooks.

Devon, Flavia, and Sarah sitting in chairs laughing, looking off to the side holding notebooks.

 

MENACE has been a huge blessing to me creatively, and I can't wait to continue writing and producing. I am just now embarking on a new project that's been in the works for several years. I'm writing a darkly comedic web series based on my experiences as a chronically ill woman. I want to expose the disadvantages, disbelief, cruelty and ignorance that people with chronic pain and chronic illness face every day. But I also want to show the behind-the-scenes of what living with chronic pain and illness feel like. I also just want to relate and make every sick chick laugh her ass off -- and if I can help healthy people better understand chronic illness in the process, I hope I can feel that at least some of the pain is worth it.

 

 Sarah posed in a colorful top with a pink sweater against a pink wall making a funny "WTF?" face. 

Sarah posed in a colorful top with a pink sweater against a pink wall making a funny "WTF?" face. 

Sarah Alò is a filmmaker & actress in Chicago, Illinois. When she's too sick to function, which is often, find her on Twitter (@sarah_alo) and Instagram (@sarahjoalo).

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Anonymous: Letter To My Sixteen Year Old, Suicidal Self...

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Anonymous: Letter To My Sixteen Year Old, Suicidal Self...

This Spotlight post was written by an Ambassador who is choosing to stay anonymous. Trigger warning: mental illness, suicidal ideation, attempted suicide, self harm, overdose, and hospitalization in a psychiatric facility. 

To my 16-year old, suicidal self,


Well, I suppose the existence of this letter is a spoiler warning. You did attempt suicide, your
overdose put you in the hospital for five weeks, but you didn’t die. In fact, I’m you, and I’m 18
now. I know right now you’re sure that you’ll just attempt suicide over and over until someday it
actually kills you, but that isn’t what you did.


You met a therapist in the hospital. She was a social worker too, and she’s the reason I want to
be a social worker now. She helped you a lot, and when you left the hospital she gave you a
card. That card is sitting on top of my desk now. She gave you hope for the possibility of help
actually being out there. She showed you a light at the end of the tunnel. So, when you left the
hospital, you met another new therapist. You bounced between her and various intensive
outpatient and inpatient programs for about a year. I have an appointment with her tomorrow. I
also have a uniform fitting for a new job on Wednesday. See, your life actually does get
somewhere, after all. I also live in an apartment, by myself. I’m also an introvert now – talk about...a 180!


But this is about you, not me. Well, I am you, so I suppose it’s about us. I know you think this
world hurts too much. I know you think you’re not strong enough. I know you think life isn’t worth the fight. I know you think you’ll never be happy again. I know you think someone else will kill you if you don’t just kill yourself. I know suicide seems like your only choice. But you have it in you to keep fighting, you just can’t see it right now. You’re so much stronger than you think you are.


I need you to do something. Walk out of the kitchen, without the pill bottles that you’re about to grab. Go upstairs, and get your laptop. Message every adult that you know in whom you have even an ounce of trust. Message your aunt. Message your friends. Message the staff from your church. Get the home phone and call the after hours line for every doctor’s or therapist’s office you’ve ever seen. Tell them exactly what’s going on. Tell them every detail. Tell them that you’re not okay. Tell them that you have a plan and that you don’t trust yourself to stay safe. Tell them that you’re suicidal. Tell them that you have the supplies to carry out your plan. Keep telling everyone until you get help. Tell them that you have an endless list of backup plans and that they can’t possibly take away every single thing that you’re considering. Let them take you to the hospital. Tell the crisis counselor or social worker everything. They can help you. Help is real. Hope is real. You’ll find it, I promise.


I know you think that no one loves you. I know you think that you’re a horrible person. I know
you think you’re a burden. I know you think that the world would be better off without you. But
that isn’t true. You’re worthy of being alive. You deserve help. You deserve happiness. You
deserve to be okay. You deserve love. You deserve to be safe, and not just safe from other
people, but safe from yourself.


Don’t worry about the little things. The world isn’t going to end if you fail one exam. Remember that every mistake is only one moment in the context of the millions of moments that make up your life. I know it’s easier said than done, but try to let those things go. You’re going to be okay, I promise. I know you’ll be okay, because I’m the older you, and I’m okay.


I know you’ve given up on people, and you’ve given up on yourself, which means you’ve
probably also given up on me. So, if this letter doesn’t change anything, if you still take those
pills, when you go to the hospital I want you to talk to everyone who comes in the room. Speak
up for yourself. Tell them how you’re feeling. Tell them what you need. I know you’ve given up
on help, on hope, on other people, and on yourself. I know this world has failed you too many
times and too many ways. But I promise you, there is some good in this world. There are people
who actually care. There are medications that actually work. There are therapists who actually
help. The biggest challenge is simply finding them. It’s a bumpy road, I’m not going to lie to you.

Life is hard, but it’s so worth it.

It’s worth it for the spontaneous Starbucks runs at 3am. It’s worth it for taking pictures of the
perfect sunset. It’s worth it for laughing with friends until you can’t breathe. It’s worth it for
listening to the latest hit single from the top 100. It’s worth it for the latest Johnny Depp movie.
It’s worth it for the day when all of the dandelions bloom. It’s worth it for the magic in the air
before Christmas. It’s worth it for the newest flavor of frozen yogurt. It’s worth it for discovering designer clothes for five dollars at Goodwill. It’s worth it for your latest art project, and every one that could ever possibly come after it. It’s worth it for getting your writing published. It’s worth it for helping people. It’s worth it for tomorrow, and every tomorrow that will ever come.


Dear self, put the bottle down. You’re going to be alright. It’ll be worth the fight. You are loved.
You are worth it. You are strong. This world wouldn’t be the same without you here. This world
would miss you. No one could ever replace you. The world needs you here. I need you here.
Please, don’t go. Put the bottle down and take care of yourself. Paint your nails, photograph the
sunset, bake cupcakes, sing in the shower, dance in the middle of Target. Whatever you do, just
stay here.


It’s okay to not be okay. It’s okay to feel hopeless. It’s okay to hurt. It’s okay to cry. It’s okay to
be afraid. It’s okay to need help. It’s okay to tell people what you need. It’s okay to stand up for
yourself. There is nothing wrong with you, and there never has been.


Put down the bottle of pills, and find the bottle of hope. It’s out there, I promise.


With love,
18 year-old you

Note: If you or anyone you know is feeling suicidal or struggling with depression, please reach out and call the National Suicide Prevention Lifeline. 1-800-273-8255. You are not alone. You are important. You are loved. You have a sisterhood fighting with you.

From September to October 15% of proceeds from certain items of merchandise will be going towards NAMI.

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Grace's Story: Safe Space

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Grace's Story: Safe Space

Safe space. I spent the beginning of my teenage years blissfully ignorant of the concept. My life revolved around the lives of those closest to me. Without a second thought, I would follow my teachers, my friends, or my parents wherever we had to go. At a conference, on a field trip, or at the beach, my only worries were the group’s worries. Where would we eat? Was this spot too sunny? Where would we all meet up in the case of a (very unlikely) emergency? There was little time to worry about my individual needs, and there was little need to do so. But in the early months of my invisible illness becoming not-so-invisible to me, that all changed.

I started to worry about how long we would have to sit, because my back probably couldn't handle it.  How long would we have walk? My back probably couldn’t handle that either. Could I even keep up? How loud was the room we would be in? Would the smell trigger a migraine? Would the lights be too bright? How many stairs can I walk up without getting a headache? How long could I be in the elevator without feeling dizzy? Could my stomach handle the food? Where would I go if I had a personal emergency?

The adjustment to no longer being able to go out anywhere I wanted, whenever I wanted, was difficult. It took a while for me to accept that I can ask to slow down, or cancel plans, or get assistance without feeling guilty about it. And although I have finally adjusted to my new lifestyle, it is nice to know that there are still times when I can go back to not worrying.

I attended my first Ehlers Danlos Syndrome (EDS) Global Learning Conference last year in Baltimore. I had never been around that many people who were sick like me. No one questioned when I had to go back to my room early, or why someone was wearing a brace, or not eating, or walking one day and in a wheelchair the next. For three wonderful days, I had a safe space. A safe space full of brand-new ideas, conversations, and people, and I wanted to hold on to it forever.

But, like most good things, the conference came to an end, and everyone moved back to the daily struggle of being denied safe spaces. But I knew even then that I couldn’t wait a year for only three days of safe-space bliss.

And so, I became a Sick Chicks Ambassador.

I first heard about Sick Chicks (surprise!) at the EDS Conference, and I immediately fell in love with everything that it, and founder Shira Strongin, stood for. The dedication to uniting and empowering ill and disabled women around the world has proven to be, well, badass. A critical part of Sick Chick’s success is the events hosted internationally. They create a “fun, safe, and accessible space for young women to be themselves and support each other”. You might  come to rock out on karaoke night, or watch a movie, hang out and talk, or simply lounge in your PJs. No matter the theme or schedule, Sick Chick events are meant to be easy-going, exciting, and most of all, safe.

I am honored to announce that a fellow Sick Chick Ambassador and I will be hosting our very own event during the 2017 EDS Global Learning Conference at Bally’s in Las Vegas. We are welcoming any Sick Chick who is attending the conference to join us for food, games, and fun. 

Hope to see you there!

 Image Description: A young woman, Grace, with long blonde hair stands smiling in the middle of a road with forrest on either side holding a suitcase.

Image Description: A young woman, Grace, with long blonde hair stands smiling in the middle of a road with forrest on either side holding a suitcase.

Grace is a 17 year old high school senior who plays piano, lives on a rescue farm, loves to read, and dreams of becoming a doctor. She fights hEDS and AMPS, and hopes to bring awareness to illness and disability through her role as an a Sick Chicks Sister Ambassador.

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Lily's Story: Don't Get Your Panties In A Twist, Mine Already Are

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Lily's Story: Don't Get Your Panties In A Twist, Mine Already Are

My mother went in for a regular baby scan - and came out with a baby.

That’s usually how I start my story with strangers, and it is how I will begin it with you. As far as my parents were concerned, I was a healthy eight-month fetus, in a healthy body, with no problems at all. That did not end up being the case. I was born a month early via Caesarean - and came purple and tiny and screaming into the world. I spent a considerable time in an incubator (I was three pounds at birth, and most babies are around seven); eventually I went home with my parents.

Fast forward two years later, and my parents knew something was up. I wasn’t walking, and my left hand was often clenched. The doctor insisted I was just a slow learner; they weren't convinced and neither were my grandparents. Thanks to them, I was seen by a specialist, who stated something that was no doubt upsetting at the time.

I had suffered a stroke.

I was soon diagnosed with left-sided hemiplegia, a form of cerebral palsy, which means that my left side is weaker and smaller than my right. As a result, I tire easily. I don’t have full use of my left hand (I’m typing this one-handed, by the way). I limp because of leg length discrepancy, which in turn tilts my pelvis and strains my spine and joints. I’ve started using acupuncture and regular pain medications to deal with it. Five surgeries later, and I’m pretty sure this is as good as it gets.

I’ve always had pain. I view it as almost a shadow-self. It’s always there, lingering, even if it’s lesser today than it was yesterday. I became so used to it I never told anyone that it was there. It’s only now, in my early twenties, that I am confronting the fact that I am in pain. I’m disabled and it hurts. It has got worse year by year; often now I rest in bed during the day because it’s the most comfortable position I can find.

Yet because I never spoke about it unless I was physically sobbing with agony, I sometimes find that I am not believed. If you looked at me, you would not necessarily know that I am disabled. I hide it well; I’ve learnt to do so in a world that judges you for the slightest imperfection. It’s an instinct now. I have friends who never realized I was disabled until they saw me on a tired day and realized that I limp. They assumed I had a sore foot - which isn’t wrong, but I had to tell them what causes the sore foot.

Not that I mind. I’m happy to educate people about my condition, my disability. I firmly believe openness can help change attitudes for the better. I was diagnosed with depression and anxiety in early 2013, and, as with my hemiplegia, I am fighting to change ableist attitudes to both mental and physical illnesses, and I do so via social media and writing as best I can.

My body is nowhere near perfect. But it is my normal. It’s all I know. Unlike people who become disabled, I have no experience of a non-disabled body. I couldn’t tell you what it feels like to type with two hands, or carry heavy things, or dress myself in the morning without getting my damn panties in a literal (and I do mean literal) twist as I pull them up my legs. I can’t cut food like squashes or melons. Hell, I can’t even cut bread properly half the time. I still get frustrated beyond belief. I curse, I seethe, I sometimes cry. It makes me feel better for a bit. Only a bit. And then I’m back to being grumpy because guess what? It’s hard to be happy when you’re hurting or you feel inadequate. There will forever be a part of me that does.

I’m nearly twenty-three now. I’ve been disabled all my life. There’s no cure for it; you can’t cure something that’s fundamentally shaped both your mind and body while growing up. It would alter me. And I’m not sure I’d want that huge an alteration. I’m not sure who’d I be. The thing is, deep down, I like me. I like my brain, my spirit, my personality. I just have a body that grew as best it could after trauma. It’s a brave, stubborn, fragile yet strong body. It’s my body.

And despite my anger, despite my resentment -

I love it very much. 

 Image Description: A young woman with curly brown hair and glasses sits in a restaurant with teacups in front of her, smiling and holding her phone. 

Image Description: A young woman with curly brown hair and glasses sits in a restaurant with teacups in front of her, smiling and holding her phone. 

Lily is a a 22 year-old student studying for a master’s in Medieval Literature at the University of Edinburgh. She can be found educating on ableism and disability via her Twitter (@paperstainedink) and her YouTube. You can support Lily here

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Katy's Story: The Avalanche

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Katy's Story: The Avalanche

Becoming sick is similar to an avalanche. It hits all at once and a lot harder than expected. When you think that it can’t get worse, more and more piles on until you are buried alive. This is what it felt like to be diagnosed with Ehlers Danlos Syndrome and its many comorbidities.

My story starts in December of 2014 when I tore my first shoulder. I was at cheerleading practice when I decided to do a backhandspring; little did I know that this simple flip would flip my life forever. I completely dislocated my shoulder and proceeded to have surgery on it in February. Everything seemed fine for the few days after surgery, until I picked up my book bag and tore my other shoulder. These incidences were written off as coincidence. I was told that many young women have naturally loose shoulders and that I would be fine once both were surgically repaired; these doctors were wrong.

In January of 2016, I dislocated my knee walking down the stairs. Nothing provoked this incident or caused me to fall, my knee cap just slipped. Later at my doctor, he picked up my leg to examine my knee, and my hip fell straight out of the socket. This was the first day that a doctor said the words “Ehlers Danlos Syndrome”. Ever since then my life has been a whirlwind of body systems ceasing to function. Diagnoses have stacked up and my medical binder has grown and grown in width.

Since January of 2016, my list of diagnoses has grown to include Celiac Disease, Postural Orthostatic Tachycardia Syndrome (POTS), and Hemiplegic Migraines. All of these diagnoses have been scary in themselves, and each has exacerbated the next. With my celiac disease, I could not eat anything for months which resulted in lots of fainting and migraines presenting as stroked (hemiplegic) which in return seemed to cause many more dislocations. This is when I realized that Ehlers Danlos Syndrome is an avalanche disease, and with every new mound of snow, I will have to continue to dig myself out.

So far, I’ve done a decent job of keeping the avalanche under control. I write, advocate, and tell my story to anyone who will listen. I intern with politicians and spread my story, I have written over 70 articles, and now I am a Sick Chick Ambassador. My journey won’t start here. I plan to continue on solid ground, building myself up and standing tall on the avalanche that is my body. I will continue to advocate and spread awareness for this rare condition, and I could not think of a better way to do that than being a Sick Chick Ambassador.

 

 Image Description: A young woman, Katy, smiling with dark brown hair in a field holding a small bouquet of flowers. 

Image Description: A young woman, Katy, smiling with dark brown hair in a field holding a small bouquet of flowers. 

 

Katy Brennan is a teenager who fights Ehlers Danlos, POTS, celiac and hemiplegic migraines daily. She has made it her mission to turn her struggle into something positive through her writing and advocacy. Connect with Katy on Instagram at @katy.brennan, on Twitter at @katie_brennan7, and on The Mighty

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Eleanor's Story: Sicker Than Your Average Queer

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Eleanor's Story: Sicker Than Your Average Queer

When I first got to college, I began to develop periodic fevers. Every month or so, I would develop a low grade fever combined with intense sweating, fatigue, and malaise every day for 2 to 3 weeks straight. It took me multiple months to think anything of it. I had always been someone with less than average health. In middle school, I received monthly infusions for an immunodeficiency, and had recently been diagnosed with gastritis. I also suffered from severe asthma and anxiety and depression, but never once considered myself chronically ill or disabled. During winter break of that year, I sought help from my primary care physician, who sent me to an immunologist, assuming that my immunodeficiency was back and had taken a new form. Thus began the slew of doctor’s appointments.

I’ve been diagnosed with a half dozen syndromes and illnesses over the past two years of investigation. What started as a reappearing Immunodeficiency morphed into Tumor Necrosis Factor Receptor-Associated Periodic Fever Syndrome, IBS, Somatic Symptom Disorder, Hypochondriasis, Fibromyalgia and most recently, Postural Orthostatic Tachycardia Syndrome.Meanwhile my symptoms changed and got gradually more intense. Each doctor had their own theory for my symptoms, my medical history slowly growing into an immense list of misdiagnoses and confusion, leaving me to wade through and pick out what made the most sense. My diagnosis journey is nowhere near over.

Around half way through the entire process, I began to identify as disabled. My health problems were having a significant effect on my life, and I was forced to reach out to the disabilities center at my school to receive accommodations. I received pushback for this identity change, however, from a variety of individuals. Professors called me a safety hazard and told me to drop their class. I had to drop multiple classes and could no longer continue the job I loved so much. I spent more time away from college and more time at various health centers in Orange County and Los Angeles.

My parents pushed back against my identifying as disabled, similar to their involuntary flinches when I call myself queer. They couldn’t understand why I wanted to call myself these terms that had such negative connotations. I was insulted at first by their hesitancy. But I soon realized the history of these terms, noting how “queer” was often used as an insult, and that “disabled” holds a similar past. Nevertheless, I’ve found pride in both these identities, as they allow me to relate myself to larger groups, people who I can relate to on a level different from those who do not share these labels. It allows me to connect to a rich history of powerful activists and role models, from the Trans women throwing bricks at the Stonewall Inn in 1969 to my beautiful sick chick sisters who strive for legislative change for those with chronic illnesses in 2017.

I refer to myself as “queer” because it is what best describes me. I knew I liked girls from a very young age, my “sexual awakening” sadly not arising from a best friend or a popular tween starlet but from the pages of a Victoria’s Secret Magazine. I grew up randomly selecting boys from my classes to be my “crush” when in reality I didn’t really care for any of them. I always knew I was different in the way I was attracted to people, not unlike the way I knew I was different in how much school I missed due to sick days. I didn’t allow myself to really come to terms with my identity until junior year of high school, when my best friend cameout to me as gay and a few weeks later I confessed my personal confusion over my sexuality via text. Similar to all the diagnoses and misdiagnoses I’ve endured, I continuously labeled and mislabeled myself until I finally settled just on “queer.” I’ve toyed with straight, lesbian, gay, bisexual, pansexual, even asexual, but never felt that anything really fit. I’ve always been much too fluid for such a label.

Although it might not lead to the easiest life, I’m happy to queer and I’m happy to be disabled. Both identities are rich and unique, and I’m proud that I can relate to so many amazing people that share the same labels.

 

Eleanor Goulden is a 20 year old college student from Irvine, California. She is a rising junior at Occidental College in Los Angeles where she studies Theater and Cognitive Science. When not in class, rehearsal, or bed, she does her best to involve herself in the activist community at and around Occidental.

 

 Image Description: A young woman, Eleanor, with short light brown hair, smiling over her shoulder, standing in front of a window.  

Image Description: A young woman, Eleanor, with short light brown hair, smiling over her shoulder, standing in front of a window.  

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Ciara's Story: Subjectivity

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Ciara's Story: Subjectivity

Empowerment is what I feel when I know I am being seen.

Growing up, theater is what made me feel empowered. I spent my childhood and adolescence partaking in voice lessons and dance classes. I went to an arts high school, and I breathed theater like air. When I was on a stage, the most vulnerable parts of me were exposed and visible to others, I knew who I was, I was unwavering in what I wanted for myself. I was absolute. After I graduated, I got a job as a performer for Disney. I worked for the company almost four years, in Anaheim, CA and Tokyo, Japan.

Growing up, I was also sick. Pediatricians told my parents that I would eventually grow out of it, but I didn’t. All of the sudden, I was spending my weekdays in doctor’s appointments and weekends in bed. I had no choice but to quit my job, and move back in with my parents. My unwavering sense of salience, now decrepit. I knew I was sick, but my lab tests consistently retorted with normal results. I looked healthy on paper, and I looked healthy in person. I heard responses like “You’re probably just stressed,” “You have an anxious stomach,” and my personal favorite, “You’re a woman.”

I was sick, but my sickness was invisible.

 Attending an arts high school provided a wonderfully positive environment for me and my peers to express ourselves. “Coming out” should be a liberating experience, unique to each individual, and this was widely understood and accepted on our campus. An environment for people to uncover and make themselves visible is important. People deserve to celebrate who they are.  

Although it wasn’t until my high school boyfriend and I broke up that I felt comfortable expressing my sexuality with close friends. I knew I liked women, I knew this was something I should celebrate, but somehow I thought my attraction to men made me less deserving of that celebration.  

How was it even possible for someone to be attracted to women and men? Maybe I wasn’t queer at all, maybe I was just promiscuous or greedy. Maybe I was going through a phase. Bisexuality and Pansexuality can seem taboo to some because of the notion that you have to pick a side. And when I was younger, I was surrounded by people who, in fact, did pick a side. They liked women or they liked men. They were gay, lesbian, or straight. They were decisive; firm and unyielding in their identity. And I was the grey area.

I was queer, but my queerness was invisible.

I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS (among other illnesses) in January 2016. A diagnosis definitely provided solace from the ominous uncertainty. Still, the backhanded comments from doctors and friends persisted. “But you look fine, you don’t look sick at all.” I still appeared healthy on paper and in person.

Having a diagnosed invisible chronic illness, without an identified cause or cure can make you feel like you're caught in the dark. Discovering Sick Chicks was like someone had switched on a light. Yes, I am sick. My chronic illness doesn't define me, but it exists and it is a part of my life. I will say that I am sick, and I will be heard. In my sickness I am strong and I am visible.

The same goes for my sexuality. I like men, women, and anyone in-between. This does not make me confused or promiscuous, this makes me bisexual. I will say that I am part of the LGBTQIA+ community, and I will be heard. I am firm and unyielding in my identity. I am visible.

To be visible, to be beheld in your you-ness is a powerful thing.

Illness is subjective, sexuality is subjective, the human experience is subjective. Subjective, but also perceptible.

I am humbled to be part of such an inclusive and supportive community, and as an ambassador, I hope to encourage this sense of empowerment and visibility onto my fellow Sick Chicks.

 

Ciara is 23 years old, and currently works as an Instructional Aide for the Disability Services Department at a high school. She is going to school with aspirations to become a scientist, and pursue a career in STEM. Follow her on Instagram and twitter at @ciaratmccann.

 Image Description: A young woman, Ciara, with short brown hair and a septum piercing is smiling in front of a white wall wearing a grey tank top with a coral sweater wrapped around her waist. 

Image Description: A young woman, Ciara, with short brown hair and a septum piercing is smiling in front of a white wall wearing a grey tank top with a coral sweater wrapped around her waist. 

 

 

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Carolanne's Story: Coming Out

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Carolanne's Story: Coming Out

Sometimes it’s hard enough to have one thing that sets you apart from your peers, let alone having two things that make you different. At the age of 21, two major life events occurred: I became chronically ill with gastroparesis (and a whole list of other illnesses as well) and I came out to my friends, family, and strangers as lesbian.

When I became ill, I realized there wasn’t much in my life I could control. My body was dictating my days and it was difficult to come to terms with my new limitations. In the midst of the chaos of life with a chronic illness, I became aware there was still one thing I had control over: my own happiness.

Being true to myself brought me happiness; the ability to openly love brought me happiness. But in order to gain my happiness, I had to be willing to lose as well.

I knew the risks of coming out. Luckily my family was supportive and for the most part my friends were too, but in the spoonie community I found myself hesitant to let people in. The chronic illness community is made up of so many diverse people with different viewpoints and beliefs, and I knew not everyone would be accepting. It’s a sad feeling knowing that the friends you’ve bonded with over something as personal as a chronic illness could look at you differently once they know you’re a part of the LGBTQ+ community. I concluded that if someone cannot love me unconditionally, no asterisks included, I do not want them in my life. This lead to a conscious decision to remove certain fellow chronic illness warriors from my life.

I’m lucky to be secure in who I am, I know not everyone is. Being so open with my journey has given me the gift of being a confidant to many other spoonies who are discovering they aren’t straight or cis. This honor is something I take extremely seriously and I’ve made it my mission to bring intersectionality and inclusion to the chronic illness/disabled community. I advocate for LGBTQ+ members to be included and accepted because no one should feel ousted by a group where they are supposed to receive love and support.

I am ecstatic to be a Sick Chicks Ambassador. I hope to be safe haven for my fellow LGBTQ+ spoonies and an educator to our chronically ill allies.

 

Carolanne is a 25-year-old activist who is heavily politically involved regarding social equality and change. Follow her on Instagram at @carolannemaria and on Twitter at @carolannemm

 Image Description: A young woman (Carolanne) with long blonde hair, poses in a selfie against a white tiled wall. She is smiling and tilting her head to the right. She is wearing a white t-shirt with unclear lettering. 

Image Description: A young woman (Carolanne) with long blonde hair, poses in a selfie against a white tiled wall. She is smiling and tilting her head to the right. She is wearing a white t-shirt with unclear lettering. 

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Taylor's Story: More Than A "Drama Queen"

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Taylor's Story: More Than A "Drama Queen"

Trigger warning: This Spotlight post deals with mental illness and self destructive behaviors

I was the Crazy Girl in high school; the Drama Queen, the Weird Chick, the Psycho. Something was wrong with me. I was a ticking time bomb; one minute I would be fine, laughing with friends, the next I would be crying, hysterically in the middle of class, sometimes even causing scenes and yelling. I was frequently triggered, and an easy target to bullies as an adoptive child. People didn't understand me, I didn't understand me. Out of everyone who disliked me, I'm pretty sure I disliked me the most. I was broken; emotional, forgetful, and unfocused. 

It wasn't until my adulthood that I would figure out what was actually wrong with me. I had Borderline Personality Disorder, with Dissociative Amnesia, Post Traumatic Stress Disorder, and Obsessive Compulsive Disorder. I wasn't the Drama Queen my peers had assumed me to be; I was sick, with mental illness stemming from traumas that have taken place over the course of my twenty-three years of living. My mind doesn't work the way a "healthy" mind would. My mind pushes me to the edge, makes me forget chunks of my life, and on its worst days, makes me suicidal. I'm a sick chick. 

For a long time I saw myself as a victim, as many do with mental illness. Mental health is stigmatized, even in this day and age. We, the people with mental illness, are stigmatized everywhere in media; the manic pixie dream girl, the psycho killer, the moody drama queen. We have zero respect from the media, so we have zero respect for ourselves. I started to get tired of calling myself what I saw...even more I was tired of what I was seeing. So, I decided to stop viewing myself as a victim to mental illness, and started calling myself what I really was; a mental warrior. 

I spent the past few years building my own empire; speaking out about my mental illness, exposing the truths of my personal life. I didn't want another girl to go through school just thinking she was crazy or over dramatic. I didn't want anyone else to suffer in silence. I wanted to break the stigma. And then I discovered Sick Chicks, a site to empower the girls who are sick. I felt at home reading the articles. I knew I had to be a part of it all. 

I am proud to be Sick Chicks new ambassador. I am hoping to help further break the stigma of mental illness, and hoping to help girls speak out about their mental illness, even if it's just to a family member or close friend. I want to help break the stigma; and here, I know we can do it. 

 Image Description: A young brunette woman with blue eyes is smiling in a selfie, she is wearing a red plaid flannel and is posed against a green tile wall. 

Image Description: A young brunette woman with blue eyes is smiling in a selfie, she is wearing a red plaid flannel and is posed against a green tile wall. 

Taylor is a 23 year old stay at home mom and author. She is an advocate for mental illness and is a new member of the Sick Chicks team as an Ambassador. Follow her on instagram at @authortaylorjones and on Twitter at @taycowrites. 

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Genevieve's Story: Let’s Talk About the Ugly Parts of Mental Illness

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Genevieve's Story: Let’s Talk About the Ugly Parts of Mental Illness

Trigger warning: This Spotlight post contains subject matter including mental illness, suicidal ideation, self harm, overdose, self destructive behaviors, and hospitlization in a psychiatric facility. 

When I started high school, it felt like the beginning of the rest of my life. Until it felt like the end of my life. About a month into ninth grade, I developed depression and it just got progressively worse. I had already been diagnosed with generalized anxiety disorder and Attention-Deficit/Hyperactivity Disorder (ADHD) at a young age. The combination of depression, anxiety, and ADHD created a living hell for me and I honestly have no idea how I survived. Symptoms showed up in ugly ways. I started self-harming. I couldn’t sleep. I started restricting my eating. I would go days with nothing more than an orange and a granola bar. I didn’t take care of myself. I didn’t wash my hair for weeks and I hardly changed my clothes. I lied to people I care about to protect behaviors that were destroying me. I lied to the world about so much. It wasn’t pretty.

The inside of my mind wasn’t pretty either. I started having suicidal thoughts. I imagined myself dead in the most horrific ways and felt relieved that I had a way out. I had thought patterns so twisted that looking back I realize I was almost delusional. I was so far down a pitch black hole I couldn’t tell what was healthy and what wasn’t. I was paranoid and terrified of the world. I would become overwhelmed by stimuli so easily that too many people in one room would cause me to shut down. The summer after ninth grade I started experiencing dissociative episodes and became afraid to leave my house. By the time that school started again, I was so far down a hole that there was no way that I could go to school. I barely left my room and I barely talked to anyone. So, I took a medical leave of absence and spent what would have been my tenth grade year trying to get better. It has been extremely hard, but I have gotten back on my feet and I have come a long way.

One year ago, I thought I would be dead by the end of the year. I didn’t think that I would see 2017, turn 16, or be alive to write this. But, against all odds, I am and I have something to say. May is National Mental Health Awareness Month and I wish that the awareness that people give to simple, understandable parts of mental health issues was also extended to the more unsettling parts of mental illnesses. There are so many people who stay silent and don’t talk about their experiences because their symptoms are ‘scary’ or ‘weird’ to others, but that needs to change. Let’s raise awareness about how paranoia can take over your life.  Let’s raise awareness about embarrassing thought patterns. Let’s raise awareness about intrusive thoughts of awful things. Let’s raise awareness about how horrific suicidal thoughts can be. Let’s raise awareness about not washing your hair, changing your clothes, or brushing your teeth. Let’s raise awareness about how ugly mood swings can be. Let’s raise awareness about scratching yourself until you bleed. Let’s raise awareness about being afraid to leave the house. Let’s raise awareness about hallucinations and delusions. Let’s raise awareness about the lies disorders cause you to tell. Let’s raise awareness about all the ugly, hurtful, and unsettling symptoms and parts of mental illnesses; because, no, they may not be pretty, but mental illnesses aren’t pretty. They need to be talked about, just as much as any other type of symptoms. So, let’s make May and, hopefully, every month a Mental Health Awareness Month for every mental illness and for every symptom, no matter how small or how unsettling.

 

This Spotlight post was written by Genvieve Wilhelm a 16 year old who has dealt with mental health issues all of her life. She enjoys writing and raising mental health awareness. You can contact her at wilhelmgenevieve@gmail.com

  Image Description: A young woman (Genevieve Wilhelm) with long brown hair with teal dyed tips stands in front of a blue and red graffiti wall, turning and laughing at something. 

Image Description: A young woman (Genevieve Wilhelm) with long brown hair with teal dyed tips stands in front of a blue and red graffiti wall, turning and laughing at something. 

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Madi's Story: Cystic Fibrosis Awareness Month

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Madi's Story: Cystic Fibrosis Awareness Month

Hi! I am Madi Vanstone and I was diagnosed with Cystic Fibrosis (CF) at 8 months old. CF is a Genetic Terminal disease that affects the Lungs, Digestive System, Pancreas, Bones, and Heart. Death in CF patients is most often caused by Lung complications, and as of right now the only way to prevent this issue is lung transplant.

Despite my personal battles I do my best to improve the lives of other patients. I began raising awareness and funds for CF research at 1 year old. At 11 I started to get involved in advocacy. I fought the Ontario government for coverage to a much needed “miracle” medication that was saving my life (at the cost of $350,000 a year).  My fight was successful in 2014 when Ivacaftor (Kalydeco) was added to not only the provincial healthcare plan, but also across Canada. I began working as a Canadian healthcare advocate in late 2014.  In September 2015 I flew to California to accept an award where I met Shira Strongin as well as many other Patient Advocates. I am involved with CF Canada, and many other organizations to make a difference in the rare disease community.

I am now known internationally (SO COOL) for my efforts to evoke and encourage positive changes in the rare community.

The miracle medication I am on only works for 3% of the CF population, and that is why we are raising funds to help advance CF research to find a cure and save my many CF friends from this violent, progressive,  terrible disease. I will not stop fighting until a cure is found. I wouldn't wish this battle on anyone.

On May 28th I will be walking to raise funds and awareness for Cystic Fibrosis for the 15th time. You can read more about the walk and/or sponsor me by clicking on this link.

Your donation will go towards research to find a cure for Cystic Fibrosis.

CF might slow me down, but it will never stop me from doing what I love, advocacy.

Madi Vanstone is a 15 year old model and rare disease advocate from Ontario, Canada. You can follow her on Instagram at @madi.vanstone.  You can learn more about Cystic Fibrosis here.

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