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    Community Voices

    Are there phrases or terms you wish people wouldn't use when it comes to your illness or condition?

    ...What do you wish people would say instead?

    People often call me "disfigured" because of my facial birthmark. But instead of saying I have a facial "disfigurement," I'd rather people say I have a "facial difference." My face is just a little different than the norm, and that's OK. I'm not disfigured, which has such a negative feeling and connotation behind it.

    #RareDisease #ChronicIllness #FacialDifference #MentalHealth #Anxiety #Depression #Education #Birthmark #PortWineStainBirthmark

    9 people are talking about this
    Community Voices

    How do you handle the rude comments made about your illness, disability, or physical difference?

    When people make rude comments about my facial birthmark, I typically respond in kindness. Only a few times have I unleashed the sarcasm, but I constantly think of jokes or sarcastic responses I want to give...but am not brave enough to say in that moment. So often I come home and say, "This is what someone said about my face. This is how I responded, but this is how I *wanted* to respond." Do you feel obligated to be kind when you respond to people, or do you ever have fun with how you reply to the unkind comments? #MentalHealth #Birthmark #PortwineStain #Ableism #ChronicIllness #Disability

    14 people are talking about this
    Crystal Hodges

    Ways People React to My Facial Difference - as Told by GIFs

    When you live with a facial difference, life is never boring. People are constantly in awe when I share stories about how people react to my face. From harsh comments to staring, I do my best to not only describe the stranger’s words but their tone and body reaction. But in a world where GIFs are growing in popularity, I’ve created a list of the most popular responses I get from strangers when I’m out in the public, as told by GIFs – whether I’m on a date with my boyfriend or if I’m shopping in Target with my mom. (Also, please note that most of these statements and experiences were simplified to one sentence from the interaction.) 1. “Is that contagious?” 2. “Is that a tattoo?!” (Mostly asked by children but not uncommon among adults either.) 3. “How do you shower?” 4. “I’m so jealous, I wish I had one too.” 5. “You’re ugly.” 6. A common question often asked is, “What’s wrong with your face?” Walking into a church a few years ago, a woman I’ve known my whole life even greeted me with, “Oh, I thought you were the girl who has something wrong with your face.” 7. “Hey – you have the same birthmark as me!” 8. “You know doctors can fix that, right?” 9. “You’re so brave. If I were you, I wouldn’t even leave my house.” 10. “Oh my gosh, are you OK?!” 11. *Stares* 12. *Staring, while awkwardly looking away when caught, occasionally sneaking a peak* 13. *The horror stare* 14. *When people follow my every movement with their stares* 15. “If you had enough faith, you’d be healed.” 16. “Why does your face look like that?” 17. “Oh my gosh… Your face looks really bad.” 18. “What is on your face?” 19. “Oh, is that a Halloween costume? Who are you dressed up as?” 20. “You poor thing.” 21. “You’re so beautiful.” 22. Once I went to the mall to try on makeup that hides my birthmark – which would be used for a very special occasion. (I rarely choose to hide the birthmark.) Once I was in the chair, I was invisible. Only my birthmark and my mother remained in makeup artist’s company. Instead of asking me what I thought about the makeup, she kept referring to my mother with statements such as, “Doesn’t that look better now?” She even slipped out a casual, “See? With her hair down, you can’t even see it anymore.” While this is one example alone, this GIF represents when people don’t see beyond my birthmark, when I as a human… a person… becomes invisible. 23. “What do you use to cover your birthmark? You should try this makeup brand. It hides things like that better.” 24. That one time my picture was stolen, and I was turned into a meme that went viral to over 30 million people… and cyberbullied in the process. 25. “Ew, gross.” 26. “Can I touch it?” (And let me point out that not everyone will ask, some people will just reach up and touch my cheek – especially children.) 27. ER Doctor: “I know you’re here for an allergic reaction, but did you know that you can get that birthmark treated?” 29. *More staring* 28. “You’re wrong. That’s not a birthmark – you have cancer.” 29. When people won’t believe it’s a birthmark and insist there is something doctors can do about my face. 30. When people take one look at me and their gut reaction is a swear word. 31. “Do you have purple boogers?” (Usually asked by children. But just in case you’re wondering – no, I do not.) If you also live with a facial difference or body difference, what GIFs describe the reactions you’ve gotten from strangers?  

    Crystal Hodges

    To the Nurse Who Asked, 'What Happened to Her Face?'

    Dear nurse who thought I was sleeping, “What happened to her face?” I heard you ask — and not in a friendly tone. Still groggy after the procedure to help with my neck pain (I was in a car accident two years ago), I briefly opened my eyes. I was still in the procedure room and your team had just adjusted me from my stomach and returned me to rest on my back. The anesthesia I’d been under was wearing off in a record time. Closing my eyes, I thought, “Did I just dream the nurse’s question? I must have.” But it my gut, I knew it hadn’t been a dream. As I woke up, I became more confident in what I heard you say, and it made me feel terrible. One of the anesthesiologists who was also in the room confirmed I heard her correctly. “Oh,” I told him, “you can tell her it’s just a birthmark. I don’t mind people knowing what it is. I actually write about my birthmark and story on my blog, and I’m a public speaker on the issue.” My heart felt heavy. I felt frustrated. I was hurt. I was tired. Today, a week later, I finally talked directly to your manager. I told her I was hurt and frustrated, and I was there for my neck — not my face. Your words, and the attitude in your tone, were not the first things I wanted to hear after a painful procedure. In fact, that’s the last thing I wanted to hear. She understood and was equally disappointed in the situation. She explained to me that when I entered the room to have my procedure, I had one nurse I met beforehand. When the procedure was finished and I was prepping to leave the room, I had a different nurse due to a shift change. I had you. You had no way to know when they turned me from my stomach and onto my back, my face wouldn’t be the norm. You didn’t see much about my file beforehand, nor were you informed about any medical conditions that I have. You went in blind, without any “warning” about my face. I’m guessing you probably thought I was still asleep. You probably thought I wouldn’t hear your words, I wouldn’t remember them. But I was awake. I do remember. It’s possible you meant your question, “What happened to her face?” to translate to, “Is she OK? Is she having some kind of reaction?” But it didn’t. Not with your choice of words and the tone of your voice. Instead, it translated to an unprofessional, careless attitude and sounded as though you were just being nosey. You’re not the only one to choose the wrong words on occasion. I’ve been asked if my birthmark was face paint and an allergic reaction to the flu shot. During one hospitalization, another nurse (while I was awake) rudely asked my attending nurse, “What happened to her face?!” When I started to react, she pretended like I wasn’t awake and sitting in front of her when she continued to ask my attending nurse, “Oh, is it something she’s had for a while?” She never addressed me. She never talked to me. I was invisible. A few weeks later, during a time when I was incredibly sick, a receptionist recommended I switch makeup brands so I can hide my birthmark better since “it probably bothers other people more than it bothers you.” That’s just in hospital settings alone. I’m excluding experiences at the dentist’s office, at college, online, and when I’m out with friends. Knowing the words that have been said about me and to me while awake, I don’t want to know what may be said about me behind closed doors — or when I’m asleep having my gallbladder removed or during a third ankle surgery. Your words hurt, but they inspired me. That’s why you’ll probably see me again in your department in the weeks to come. This time, I’ll be there for a different reason: To talk about my story, to explain situations I’ve been in and why my experiences are not OK and why. I’ll be teaching you and your coworkers better responses and friendlier ways to address certain issues. I’ll also be reminding you I’m more than just another patient, I’m also human — just like you. And just like you, I have a story. I have feelings. I’m more then whatever “happened to” my face. Please know, though, I won’t single you out. In fact, I don’t even remember who you are. Although I blog about my experiences, I probably wouldn’t be able to recognize the people who created the experiences. I strive to remember the situations, the stories, the quotes — but work equally as hard to forget who said it. Who said it doesn’t matter, what was said does. Your ability to grow and learn matters even more. You’re not the first person to say hurtful words. You’re not the last. But you can learn. I can’t change my appearance, but you can change the way you handle situations, your attitude, and the words you choose. You can remember all your patients are more than just an ID number waiting to be “serviced.” You can remember patients aren’t always asleep, regardless if their eyes are closed. A version of this post originally appeared on The Travelin’ Chick. The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “ Share Your Story ” page for more about our submission guidelines. Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night .

    Crystal Hodges

    Woman Responds When Port-Wine Stain Photo Goes Viral

    People often forget that I’m more than a girl with a facial difference. They forget I’m more than just my face — I’m more than just a birthmark. They forget I’m more than something to stare at with their wide eyes and open jaws. People forget that I have a name. My name is Crystal. I love to travel the world, capturing beautiful moments with my camera, pen and journal in hand. I’m a baker (creme brûlée will be my next challenge!), a Jamba Juice addict and future American Sign Language Interpreter. I’m someone who has experienced tremendous joys, but also gut-wrenching sorrows. I am more than the mark on my skin. In the past I’ve been told by (adult) strangers that I must have skin cancer, that there is something wrong with me and that it’s not really a birthmark. Strangers have persisted that I should have surgery to “fix” my face, even after I tried to educate them by explaining that it’s not that simple — and I’m happy with who I am, how I am. Others have told me that I must be courageous, for if they were me, they’d never even leave their house. Just like millions of other people, I have a birthmark. Mine just happens to be on my face. The birthmark I have is called a port-wine stain. Three of every 1,000 people have this kind of birthmark and they are most commonly found on the face and neck. Instead of being the typical skin-deep birthmark, mine goes all the way to my brain because it is caused by extra blood vessels. My left upper lip is also affected in color and size, as well as my left cheek… even my bone structure is different on the side with the birthmark! (But it’s kind of cool… It’s similar to a mood ring, as it changes colors with the temperatures of the day. People always known I’m cold before I even say a word!) Due to the extra blood vessels, I have extra blood pressure in my eye, which causes a disease called glaucoma. From the age of 8, I’ve had to live with and accept fact that my left eye could possibly go blind one day in my distant future. Every few years I also have to have MRIs to make sure that none of the extra blood vessels have expanded to cause any damage to my brain. About every two to three months I also have laser treatments on my birthmark. During this time, my face is a darker color than usual. Without the treatments, the blood vessels can grow, causing my skin to harden, become a pebble-stone-like texture, and bleed at random whenever it wants. But no matter how many treatments I have and even if my birthmark becomes undetectable to the naked eye, I will always have my birthmark. My cheek will always look swollen and my features asymmetrical. Back in 2014, a group on Facebook with nearly 27 million followers used a photo of mine without my knowledge or consent — a photo that I took 20 minutes after a painful laser treatment. They added text to the photo, “1 Like = Beautiful,” as well as their personal logo. My name and permission were not included in this process, nor was my story or a link to my blog or website. My goal is not to endorse or promote this Facebook group, hence blurring their name, link and logo. My only goal is to tell my story and respond to the situation. I didn’t know about this until a few months later, after arriving home from a math class. A friend sent me the link saying they saw my face in someone else’s newsfeed and the photo already had over 14,000 likes within the first eight hours of it being posted. From my research, at least five total Facebook groups have used my image, causing it to go viral at least 16 times to over 30 million strangers around the world. One share alone has 256,000-plus “likes” and thousands of comments. It angers me to know that someone took my situation for their personal gain. It angers me that they took a specific photo — a photo that shows how I look only two weeks out of every two to three months — without sharing the background and ongoing story with it. It angers me that they never even asked for my permission. And overall? The whole situation hurt. It made me feel bad. I don’t mind my story getting out there; I blog about my facial difference on a regular basis. But what I don’t want is my photo to go viral without the story being told. I want people to know my story — but not with the purpose of gaining sympathy. I want my story to be known in attempts of educating other people, and in hopes of motivating a cultural change in how “different” people are treated. A part of me feels some of the “likes” are probably genuine in their thoughts of my beauty. But a part of me also feels as though they’re sympathy likes… and I’ve never been one who needs pity. I don’t need 30 million strangers to validate who I am or my beauty. Just because I have a facial difference doesn’t automatically mean I lack confidence or think I’m “ugly.” In fact, while I’ve had my up-and-down days, that’s never been a big struggle of mine. I have spent hours reading thousands of the comments that were made and the countless shares that were made. The majority of the comments have been surprisingly positive while others made me laugh because I knew I couldn’t take them too seriously. They’ve ranged from people telling me that they wished they were purple as well, and there was one who wrote a post asking God to remove the “evil” from my face. Some stated that they are glad that we don’t get into heaven by looks alone. They’ve also said my birthmark will fade with age (it won’t) or a doctor can help me. But many have said I’m beautiful, they’re jealous of my unique color scheme and that it’s the inside that counts. One positive part of this whole crazy experience? My dating pool has probably grown from a small fishbowl to an ocean full of fish. My worth, beauty and value are so much deeper than what happens in the digital world. We’re all different in our own ways — whether our differences are visible or not. But more than that? We’re all beautiful and special in our own ways. We are more than the pixels that people see on their screens, and we can’t allow others to make us believe otherwise. A longer version of this post originally appeared on Life at Random in August 2014. The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. If you’d like to participate, please send a blog post to . Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

    This Dancer Won't Hide the Facial Birthmark an Agent Suggested She Photoshop Out

    Cassandra Naud was born to stand out. Via Instagram On her right cheek just under her eye, Naud has a large birthmark covered in hair. When she was born, her parents were given the option to remove it, but doing so would have risked badly scarring her face, The Daily Mail reported. They decided against it, and Naud says she’s grateful for that decision. Via Instagram “It’s part of who I am,” Naud told the outlet. “Having a birthmark distinguishes me and I don’t feel that it has ever held me back.” Only once, while in high school, did she briefly consider removing it but changed her mind. Via Instagram The 22-year-old from Alberta, Canada, moved to Los Angeles to study at the American Musical and Dramatic Academy, according to her Facebook page. She now works as a professional dancer. A casting agent once told Naud to photoshop the mark out of her headshots, but she ignored the advice. Despite working in an industry where appearance is held to ridiculous standards, she’s had professional success and feels that her birthmark helps her stand out in a crowd. “People should appreciate their individuality,” she told The Daily Mail. “Times are changing, so don’t worry about looking normal. Don’t let bullies stop you and be proud of your uniqueness.” Check out more of her stunning photos below: Via Instagram Via Instagram Via Instagram Via Instagram Via Instagram Via Instagram h/t A Plus Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

    These Parents Just Got Massive Red Tattoos for the Loveliest Reason

    Honey-rae Phillips, 18 months old, has some extraordinary parents. The toddler was born with a large red birthmark covering the right side of her body all the way from her foot to her lower back. Now, her parents are sporting the same birthmark as her. Tanya and Adam Phillips, of Grimsby, England, recently got large matching tattoos of their daughter’s birthmark so she wouldn’t feel alone, The Mirror reported. Post by TODAY. “Most people might think it's very extreme but to us it was the natural thing to do to ensure our daughter never felt different or alone in the world,” Tanya Phillips told The Mirror. “Although in our eyes she was perfect, I knew other people would cruelly point and stare at her.” Phillips, a mother of four, told the outlet that after the swelling had gone down, Honey-rae touched the birthmark and said, “match.” Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .