KhrystyAna, the self-love advocate and activist, was invited to write this editorial about the “I AM VISIBLE” project in order to raise awareness and visibility towards people who live with invisible disabilities and are often under-represented in the media. Their aim was to send a message to everyone to be kinder with each other show more love and acceptance to everyone irrespective of our differences, our habits, our social differences and our preferences.
I Am Visible is another project of #therealcatwalk, the movement that truly embraces and celebrates people from all walks of life. This time around KhrystyAna, the self-love advocate and activist, really wanted to bring our attention to people that aren’t mentioned often enough in the media, those who have challenges with invisible disabilities.
14 amazing humans came together to a safe space provided by Mona Liza Studios in Brooklyn. They openly talked, got to know each other, and how to be better allies. And they decided to share what we learned to help people be more open, and kinder to one other and stop judging based on looks and our rigid social habits. There are subtle challenges each person experiences on daily life and each of them wrote about it. I hope that their words can awaken something new in each reader.
Thank you so much,
Below you will get the chance to meet of 14 beautiful humans photographed by Joe Gray and you can read the inspiring words and their answers to the following questions:
1. How do you define invisible disability?
2 Write about your disabilities that are not immediately apparent.
3. Why is this important to talk about?
4 what are the challenges you face / or faced? If you can bring real example that people can relate to and learn from?
5. Ideal outcome of this situation – how would the unaware person behave if they were a bit more considerate / compassionate ?
6. Anything else you can add that can inspire people to be less harsh / rude / rough to each other.
Disability: ADHD, Learning Disabilities, Autism
I grew up in an educational and social environment that didn’t understand the power that learning differently brings. My disabilities are invisible yet I come face to face with my own throughout every part of my day. In elementary school I was diagnosed with ADHD, Dyslexia, and an Auditory Processing Disorder and at 22 was diagnosed as Autistic. Throughout the majority of my primary education I felt ashamed to leave the classroom for my accommodations and “special testing”. I felt isolated and was only told what was “wrong” with me in the classroom, never the strengths I brought. During a parent-teacher conference, a teacher told my parents: “Ren is cute but she’s not bright.” When I was diagnosed as Autistic I was met with comments about how I didn’t “appear Autistic” or “I would have never known you were Autistic!” So much of what goes unseen and is stigmatized translates into late and inaccurate diagnoses in addition to trauma.
Despite the systemic barriers that held me back, I was privileged enough to attend college and to receive a Master’s in Social Enterprise Admin. from Columbia’s School of Social Work, where I specialized in disability justice. I’ve found the power that neurodiversity brings the world and can now exemplify this through my career in disability advocacy at Eye to Eye, a national organization that empowers middle school through college-aged students to celebrate the power that comes with the invisible disabilities they hold and to change the social landscape of what it means to learn differently.
Tiffanie Lee Galan, or Veil
Disability: Tourette Syndrome and intermittent mobility, with Co morbid conditions such as depression, anxiety, OCD, mood swings, sensory overload, and PTSD
The disability I have is a neurological disorder called Tourette Syndrome, which manifests differently in every person who has it. one thing remains relatable- we can’t control our bodies, and there is no cure. We experience vocal and motor tics, uncontrollable noises and body movements. You can relate this to a sneeze; You can feel it coming but you cannot stop it from happening. My tics Can range from really manageable, to leaving me in so much pain and unable to walk. Sometimes it’s visible or audible, and other times it’s not. With my condition come a slew co morbid mental health issues that only make my daily life even more unmanageable. The question I often wake up asking myself is, “Can I depend on my body and mind today?” On bad days, the question is simply just, “Why?” Too many people say I’m lazy and making excuses just because they can’t see what’s going on. I encourage everyone to be more open minded, patient, understanding, kind, and willing to learn.
Maria Isabel Barros Guinle
Disability: Chronic tendonitis
I have lived with debilitating pain for the last 8 years of my life. After suffering an accident doing gymnastics, I developed chronic tendonitis on my hip flexors. There are days when I can walk and run and jump around and you’d never be able to tell something is wrong, but there are many days that even something like sleeping is hard because of my pain. This project was so important to me because I pass as someone who is fully able-bodied – I even minored in Dance in college! – but there are days when I can’t take 10 steps without crying or falling on the floor. I’ve had many people doubt how real my pain is and even had people say that I was making up my pain to get housing accommodations in college. These comments only add to my physical pain. If this project can change how a single person treats someone with an invisible disability, it’ll already have made a significant impact, and that is what matters to me – to make ourselves less invisible, one person a time.
Disability: C- PTSD
Mental illnesses or disorders vary between person but mines is pretty chronic I deal with a lot of pain, fainting, throwing up, sleeping spells, muscle weakness, fatigue, nightmare, panic attacks, and others.
I think if my illness was able to be seen in my body it would not be something pleasurable to see.
I am working on a career as a model, my body, my looks, my youth, is untouched and unremarkable to the average person and it makes my illness way more difficult and Less understanding to society.
As a community, we MUST continue to have these conversations and as a society, we must be responsible to investigate these issues to be ready to advocate and repair spaces for our future kids and future world.
Everyone deserves to feel like they can exercise their right to live in equity while co-existing and I believe the only way we are going to be able to do that happily is acknowledging our lack of understanding for one another embracing a thirst to move forward and using each step with knowledge as a stepping stone to a more visible future.
If you think about it, a disabled person does not really have a disability, they just live different than an average human being, so let’s open up space to be able to all live differently in the same world.
Hae Rin Lee
Disability: Neuromuscular disease
“You look great! Are you feeling better?” is a statement I hear all too often. While I appreciate the compliment, we’re engrained in society to think looking a certain way equates to being healthy.
I have a 1-in-1-million neuromuscular disease that causes me global, painful muscle spasms and stiffness, leading to trouble breathing, swallowing, digesting food, writing, typing, and walking, among other symptoms. Most of these things make me a significant fall risk.
The invisible parts are the parts doctors and friends don’t see — the additional pain and full-body spasms that can occur after just meeting a friend for coffee or going to a doctor’s appointment the day before. It’s scrolling through social media and seeing events you missed out on — or worse, weren’t invited to in the first place.
I still push myself to meet up with friends and go to events, even if I know I will “pay” for it the next few days. Sometimes, if it’s a place I know I’ll be sitting the majority of the time, I’ll get an Uber and use my cane. Then I’ll hear comments from people in my apartment building when they see me in my wheelchair a few days later, “I’ve seen you walk. I know you can walk.” I’ll try to explain my illness, but it usually falls on deaf ears.
I’m grateful to friends and strangers alike who try to understand and who genuinely try to help, whether it be just opening a door. We as a society should make an effort to open literal and metaphorical doors for everyone.
To me an invisible disability is anything that isn’t clearly outwardly noticeable, and people often don’t realize the breadth of conditions that can include. There’s an image I think people have when they picture autism and I don’t fit that image. The problem is that no two autistic people are exactly alike; our abilities and limitations vary from person to person and even from day to day. I tend to be confident and conversational, but I’m also constantly stimming and if I don’t wear my noise cancelling headphones around the city I’m immediately overstimulated. The problem with masking and not “seeming” or “looking” autistic is that people tend to be less understanding or accommodating when the mask slips. Functioning labels (high- and low-) don’t help because if I’m seen as “high-functioning,” it invalidates the very real, daily struggles I have. I had a meltdown at work the other day and had to go home. My coworkers know I’m on the spectrum, but they’d never seen me “act” autistic. But I’m autistic every moment of every day. What I want is to be taken seriously when I advocate for myself as an autistic person. Don’t tell us who we are or what we are or aren’t capable of. And don’t presume to understand someone’s neurology based on how they look. I want respect and understanding. Autism is inextricably part of who I am so let me be who I am.
Comic book artist/writer and founder of BeyondComics.TV
@graigweich (Instagram & Facebook).
Having an invisible disability is incredibly challenging because people will question you and doubt you because the disability is not obvious to the naked eye, thus I find myself often times in positions having to explain my personal details and life challenges to strangers like when my back and knee injuries were at their worst and I asked someone to slide over so I could sit down as well in the Subway and they refused, giving me glaring looks, telling me that I look fine and can stand, not realizing the amount of debilitating pain I was in… No one should have to make a scene in order for people to know but when I said “I’m dealing with something that’s causing me discomfort and need to sit” they did not believe me and thus I had to actually go into the detailed description of my injuries in order to “prove ” to them I was actually hurt for them to then slide over and make room for me to sit down on the crowded train.
Also when the inflammation is not too bad some days thanks to Advil, I’m able to dance and move fairly normally (not comparing to what I used to be able to do) but then people will criticize and say “I thought you were injured how are you able to dance” and things like this that make you self conscious.
I wish people could understand that just because you can’t see someone’s pain (emotional or physical) that it’s important for us all to respect each other as human beings and try to lift each other up instead of criticize and tear each other down, that is one of the reasons why I created my new superheroes at BeyondComics.TV to help inspire those who want to be real life superheroes by helping others through my creations when I donate to charities in my spare time in order to give back.
Just by being less judgmental and more supportive is a way for us all to be real life superheroes!
Disability: Fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome
I have Fibromyalgia and myalgic encephalomyelitis/chronic fatigue syndrome. Until recently these were considered a mental health issue because we are often not even believed by medical professionals that our illnesses even exist. In passing you would never know that I have a disability. A lot of my days are spent inside and unable to leave my bed because my illnesses make me feel like I have the flu almost every day. I don’t think that most people realize how isolating being chronically ill can be. I have been afraid to use a wheelchair in public for fear of being judged because I technically can walk. I just want everyone to think twice before passing judgement. There are so many of us that hide being sick because of our experiences being judged by strangers, family and even doctors. I deprive myself of the things that would help me experience life because of how I was reacted to in the past. All we want is to be considered and heard instead of shamed and isolated.
Disability: Anxiety, Depression, PTSD and TBI
I would define an invisible disability as something someone is struggling with that is not necessarily noticeable to the eye of others, an example would be depression. I for instance struggle with anxiety and depression as well as PTSD and TBI (traumatic brain injury). None of these issues are noticeable by simply just looking at me, or even interacting with me. Like most people struggling with these issues I (we) bottle up the negative emotions inside until alone, or until a mental break happens. For myself, due to my TBI the PTSD, anxiety and depression I suffer from is dramatically increased, but due to my career path as a photographer and studio owner I am forced to act as if nothing is wrong and show a happy goofy self. In reality that goofy self I portray has for the most part been a front to deep seated issues that I was internalizing and battling at the moment, but no one would ever know. That goofy self is the real me wanting to come out, but instead of it being natural it was for so long forced to come out to cope with my current emotions that are unacceptable or inappropriate to show to others. Luckily I have personally started therapy and medication which has helped dramatically, but to even take those steps toward treatment were extremely hard and even then it will never fully disappear but I’m finally okay with that. Now with that said, not everyone gets to that point, many times I caught myself coming to the end and giving up but the drive to create and stay with my family forced me to commit to NOT giving up. If I did not have my parents who love me or my creativity and career would I still be saying this? Possibly and probably not, but would anyone know what I was going through? Absolutely not.
Shooting these images was an incredible opportunity for me personally, and talking to everyone about what caused my issues and how they grew over time and how I’m now managing them was very helpful on a personal level, but hearing everyone else speak was beyond inspiring. I even got in front of the camera and let Khrystyana take my photo (which I never do), and you’d never know by looking at my portrait or the portraits I took that I was battling one of the hardest times for myself mentally. That’s what anxiety, depression and PTSD are though, invisible.
Disability: Anxiety, Depression
I was diagnosed with severe anxiety and depression when I was 13 years old initially due to experiencing domestic violence in my home since I was 5 years old. When I was diagnosed, I wasn’t surprised but everyone around me was. My invisible disabilities since then have been disregarded and misunderstood countless times. Whether I was at home, school, or with friends, it never went away.
In school, my parents, teachers, and peers viewed me as an ambitious and high-achieving student which fuelled my anxiety to constantly feel overwhelming pressure to do everything and be the best at it. I was terrified of disappointing everyone around me and so began the slippery slopes of negative thoughts that brought me from thinking I’m an absolute to failure to asking myself questions like, “Why am I even here? What’s the point anymore?”. These thoughts would eat at me throughout my day at school, eventually debilitating me. I couldn’t get out of bed anymore and even on days that I did, I would sit in my car before class and have an anxiety attack.
When I started treatment, I was absent from school for days, sometimes a week even, which made things even worse. My peers looked at me with envy, wondering how I could cut class and miss testing so often without getting in trouble. I was president of my class at the time, so people believed that’s why I had the advantage. The school administration was in complete disbelief that anything was wrong with me at all. I was taking high-level courses and participated in a handful of challenging and time-consuming extracurriculars, which mostly kept me distracted and away from my toxic life at home. Rather than encouraging my process, the vice principal threatened to take away school trips, prom, graduation, everything I had ever worked and suffered for. I had no referrals, was in the top 10% of my class, was planning on continuing my education at the best school for sociology yet they wanted to punish me.
High school was temporary, but the conditions I had were permanent. After working countless hours with the school social workers and psychologist and outside of school with my own team, I finally got on a 504 plan. I graduated with the pointless honors I had earned and left high school hoping that my experience would teach the administration how to properly deal with students suffering from mental illness. Just because you can’t see it, doesn’t mean it’s not there.
Judy C Yang
I have scoliosis which oftentimes prevents me from doing normal tasks. I can’t carry heavy objects or stand for prolonged periods of time because of the pain it will bring. Some people think I’m lazy or weak, but I’d rather ask for help than risk a whole week of back pain.
Even though it doesn’t seem very visible, the curvature of my spine makes one side of my waist go inwards while the other side is straighter. This makes me self-conscious when I wear certain clothes and it’s tough when other women make comments about how “unsexy” I am because I don’t wear more body-hugging clothes like them. I used to love wearing that type of clothing, but as the curve became more severe, I became more anxious about others seeing my back problem. It took a long time, but I found other ways to showcase my sense of style while wearing clothes that didn’t highlight the scoliosis.
I still struggle with my image and confidence every day but I’m trying to move forward. I hope people can be more compassionate towards others who have an invisible disability – just because they might not understand what’s happening, it doesn’t mean they have to be judgmental. Sometimes a small comment can affect another’s mood, good or bad, so people should be more mindful of what they say to others. We should use our words to lift each other up, not put each other down.
Disability: Crohn’s Disease, Amplified Muscoskeletal Pain Syndrome,Gastroparesis, and anxiety.
People don’t understand things they can’t see. I look healthy on the outside, I appear to function like a typical young adult. When I tell someone I’m disabled, they have a range of reactions. It can be anything from “Oh Crohn’s, isn’t that a bathroom Disease?” To “Well, you don’t look sick!” When I hear these statements, I want to shrink into myself in embarrassment. Crohn’s Disease is a spectrum. It can affect anything from the mouth to the toes. It induced chronic pain in my stomach and intestines, it made me lose my ability to eat; so, I rely on a feeding tube for all of my nutrition, and it means my immune system is not functioning properly because I have to suppress it.
Everyday is different and unpredictable, I can’t control my symptoms or how people act around me, but I just want them to know to be patient. To be kind, to not judge an ailment they can’t see or determine someone isn’t sick or disabled based on how they present that day. So next time someone tells you they have Crohn’s, please know, it is more than just a bathroom disease.