Coming Out as Disabled 🌻 Why I Was Reluctant to Share My Invisible Disabilities
This video is a long time coming. I’ve wanted to make it for a while, but I was afraid. I changed my social bios (so that they reflected my disabilities) quite a while ago, but speaking directly about it all felt much more daunting. My disabilities are mostly invisible and I can effectively hide them but I wanted to stop hiding. I could be an advocate for disability if I stopped hiding. I also have been trying to stick to the niche of art but because my disabilities affect how I work, I have lots of footage I can’t share without revealing my disabilities. Talking Heads are faster to film and easier to edit but I was avoiding them because I didn’t want to talk just about art. I prefer to cover a variety of topics. I am happy to say that making this video makes me feel freer to not worry about having a niche and to make more authentic content.
🩺 Non-Exhaustive List of Current Diagnosis:
Neurodivergence
Hypermobility Spectrum Disorder
MCAS
Dysautonomia
Multiple Food Allergies
⚕️From the CDC:
"A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)."
www.cdc.gov/ncbddd/disability...
♿︎ Featured Disability Advocates:
/ @specialbooksbyspecial...
/ @purpleella
/ @mommingwithmigraine
/ @squirmyandgru
/ @hannahwitton
/ @jessicaoutofthecloset
/ @momonthespectrum
/ @coleandcharisma
/ @theannieelainey
/ @aneva
instagram.com/slayleebays?igs...\
0:00 Coming Up
0:14 Hello
1:05 Realizing I Was Disabled
2:15 My Current Short List of Diagnosis’s
2:26 CDC Definition of Disability
4:35 Disability isn’t a Bad Word
4:45 Why I Didn’t Think I Was Disabled
5:56 Discovering My ADHD at 15 from a Magazine Article
6:05 ADD Journal Entry from 1995
8:17 First Attempt at a ADD Diagnosis
8:55 Starting KZhead Channel
10:49 My Failure to Take ADHD Seriously Enough
11:25 My Full Neuropsych Evaluation
12:07 Exploring Overlap Between ADHD and Autism
12:45 Cognitive Dissonance with My Autism Diagnosis
14:40 Being High Masking and Stress
15:05 The Crossover Between Hypermobility/EDS and Autism/ADHD
16:52 Why I Didn’t Want to Disclose I am Disabled
18:55 Why I am Choosing to Share Now
19:37 Trying To Unmask and Not Hide Anymore
21:49 I Want My Voice to Be Heard: Asking for Accommodations and Advocating for Others
22:52 Other Reasons For Not Wanting To Disclose
23:21 Preexisting Conditions and Discrimination
24:57 The Least Important Reason I Didn’t Want To Make This Video
27:48 Not Choosing Just One Niche and Promising More Talking Heads
29:44 Bye
30:39 Another Diary Entry: Internalized Ableism
I have a neurological disability that was neglected by my family who wanted to feign perfection. The neglect caused brain damage that affects how I can function and my ability to react/process within a certain amount of time. I actually can't drive because of it. People try to make excuses and compare me to other people with disabilities to shut down my limitations. People will get SO MAD about it even though I'm not hurting anyone. My family is included in that. It's so hard.
Thank you for sharing. It’s so hard when family is unaware or worse neglectful. I hope that you are getting the support you need or finding ways to support yourself and set healthy boundaries. You know you best. I find for myself my limitations are often changing and so it can be hard to even know what I need much less communicate it. I’m sorry it’s so hard. Thank you for reaching out and I hope you are able to find some comfort/support in these online communities.
Thank you for making this. We are in the same club - reluctant to label ourselves but living with disability. Congrats on coming out! :)
Aww. Thank you. It feels good to be out. The club of disabled artists….I suspect it’s a club with many members, many of us reluctant to admit we are members. ❤
As long as you're staying hydrated, thats whats important
Hello from a fellow artist with neurodiversity and a physical disability! In my younger years I was kind of infiltrated with the idea that I was not allowed to share about my issues because I might be kicked out of some insurance for it, but today I am kind of a niche product who likes talking, painting and filmmaking at the same time!
Hi!Nice to meet you. So nice having other disabled artists in this community. Same! I was concerned about pre-existing conditions. I was denied insurance at one point until I proved I no longer had an autoimmune disease. (I had other undiagnosed stuff at the time but no real label anyway.) Talking painting, and film making…. nice niche to have.
Wow I appreciate your courage. Your authentic message touches my heart. Your awareness of the spectrum of functionality brings a different level of advocacy that is so hidden. I appreciate how you are using your personal life experience combined with your professional experience to tell a story that is so often hidden. Kudos to you for stepping out of your comfort zone and doing your part to break the cycle of shame. You are a beacon of light in your heart and art. Kudos to you!
Wow, thank you. ❤❤❤ It took me a long time to work up the courage but I feel a weight has been lifted. It feels good to no longer be actively hiding. I certainly hope my story gives something to others and helps others feel more empowered and less ashamed. Thank you for your kind words.
I'm so glad I found your channel. It almost seems like kismet. I'm also high-masking neurodivergent, artistic, and forever curious about the world around me. KZhead has been my go-to for learning about a multitude of different subjects. I listen to it daily as I crochet (my current artistic outlet) and yes, there have been many different creative outlets over the years, as my craft room will attest. 😅 Thank you for sharing such a personal part of your life. Your artwork is beautiful.
Aww thanks. 😊 I’m glad you’re here. It sounds like we have a lot in common. Thanks for joining me on my journey. 💛 One of the reasons I picked visual art is how many things I can explore though it, it keeps my graveyard of deserted hobbies smaller….. Not that there is anything wrong with having lots of different hobbies, (even if some are only temporary) but my filming equipment and art stuff already takes up a lot of precious space. Haha
I understand what you are saying & why you were reluctant. They’re very valid concerns. I also understand the extra energy required to hide or mask. I have a differ list of invisible chronic illnesses & had to come to terms w/the framing of disability because it’s accurate. And I’ve found acceptance, the ongoing act of acceptance of my abilities & disabilities is necessary to find some sort of active peace & joy. Being open, not hiding how my disabilities affect every single aspect of my life is an act of self kindness. And those that have cultivated human empathy make an effort to connect & be in my life. Those that cannot access that empathy have been removed either by myself or by their own absence…as sort of an automatic filter that removes that stress from my life. I’m sorry the journey you’ve traveled has been so difficult & caused so much pain. I hope your path forward brings less pain & more peace and joy. Hugs for the courage it took to make this video 🤗. And solidarity ✊ for a day when it doesn’t require courage for anyone to do so.
Thank you for sharing your story. “An act of self kindness” really resonates with me. I think it was the practice I developed of constantly saying kind things to myself (no matter what, no matter how big or silly my mistakes) has brought me the most peace and has given me the confidence to make this video. I’m so happy to hear you are choosing to be kind to yourself. It is beautiful to know that the people who are in your life, really want to be there. And Yes! to a day when a person doesn’t need to be brave on top of being disabled. It will be enough to just be.
My mental disability went unchecked and undiagnosed until i was in my early 20s. even then, because i had a bad counselor, i remained undiagnosed and untreated medically. I landed in a mental hospital because of it all. But it always baffles people because i did do well in school. But when i entered the working world, everything fell apart for me. Suddebly there wasnt a daily routine i could follow, a predictability i could rely on. Every moment of everyday was different and i couldnt handle it. I say i did well in school grades wise, but i struggled to get those good grades, especialmente when i was in college. I remember i pushed my body way beyond its limits for the sake of getting good grades. I didn't do self care at all. That behaviour really messed me up and made my disability more severe. But i mask it so well. Whenever im in trouble, i get completely silent. People close to me tell me all the time that it doesn't seem like im troubled even though i am. I need to learn more about masking because i do that all the time. It is hard being mentally disabled because people always tell me that im lying about my disability. That they have bad days and can still work. What they dont realize is that there are numerous attempts ive made to taking my own life. That my bad days are more than just bad days. That there are days where i cannot function at all. There is so much more i could say, but i will have to save it for my own video. You've inspired me to make a video about it. I dunno when i will be brave enough to make it and post it though
I’m so sorry you have had to go through this but thank you for sharing. Unfortunately, I don’t think experiences like yours are particularly uncommon. I hope you do make your own video. It took me a long time to work up the courage to make it so I understand needing the bravery. If you do make the video please give us a link to it. I think many people would benefit for your story. I myself have benefited from sharing my video….. I didn’t think I would but it has given me confidence seeing how people have responded. The masking is such an odd thing right? It opens so many doors and then we realize we are now in a place that’s not a good fit for us…. Then what do we do? Of course self advocacy is an option but it takes so much energy and we are already using so much energy just to mask. It’s hard. I hope you find a balance…I’m still working on it.
I don't know why but sometimes I get almost jellous at others with neurodicergence who have been able to mask it well and become successful, even if I know too how hard and depressing it can be and I'm good at making depending on the situation and absolutely awful other times. But it's really sad that we have to mask but I have this constant fear (which probably many have) that I wont be accepted, will be kicked out, not understood in and disliked just for who I am. I feel I always come second, like people say you can't be here because we have to think about all the others, they will get upset, your behavior will affect them, that this affects and crushes me is never important. Specially as I feel I try so hard, I want to be seen as a good person, seen as normal and liked, I want no harm to anyone, still it's not enough. I don't know if others with autism experience or feel like this. I'm very lucky to not have any physical conditions, like chronic pain as example though, I'm slightly hypermobile but it doesn't affect me yet. I have noticed hypermobility specially and pain seems common with many with autism, I can imagine it being an extra struggle for many. Honestly I agree that we need to stop masking so much, even if there is always a fear of you don't mask, hopefully it can lead to other people who are not behaving like the norm being more accepted and not seen as inconpetent or scary.
Am I the only one who didn't mask really at all until I got my diagnoses, then started masking like crazy once I knew that things I did were perceived as bad/wrong? I will note that I was not the one who sought out my diagnoses, but rather my parents did, since I was still in high school, and it took until the last 2 years of high school to get them likely because I was homeschooled 3rd-6th grade and the rest of my immediate family is also neurodivergent, as well as some of my extended family, so my mom thought that certain ND things _were_ "normal" and that being on medication would make the rest of me (the "wrong"/"bad" things - her words, not mine) "normal", but that's not how it works, so she was convinced that I didn't even have ADHD at all when she didn't see the super drastic changes that she wanted to see from me being on the meds - it wasn't until 6 years later that I got the autism diagnosis, and 7 years later that I got the ADHD diagnosis, just in time for college.
That sounds like quite a journey and I know so many people in our community can totally relate to facing huge barriers while getting a proper diagnosis. It’s unfortunate that any of your traits were labeled bad or wrong. I’m sorry. To be honest I can relate to masking more since my diagnosis. One thing that has changed for the better is that I make sure I give myself plenty of downtime to recover from masking and I leave room for stimming. In the past the amount I masked increased or decreased over the years for a variety of reasons. It was all mostly unconscious prior to learning I was autistic. It hasn’t decreased with the diagnosis because in many ways I’m more self conscious. I have a greater understanding of what I do that might be socially unacceptable. My family too has many neurodivergent behaviors I thought were “normal.” I’ve always known I was different but in some ways felt “less different” (at least on the outside) as one of the higher masking individuals in my family. It’s an odd place to be and I hope as I get used to the diagnosis I will relax over time and use my masking ability more and more sparingly. Good luck on your journey.
@@heatherinde Yeah, my mom suspected I had ADD when I was in 4th grade (she didn't even consider the autism at that age because of the prevalent stereotypes in the early '00s), but her unrealistic expectations regarding meds convinced her I didn't have ADD until I was in 12th grade and had already gotten my autism diagnosis but she thought there was something else going on as well, so, 2 months before I graduated from high school, I finally got it. The "wrong"/"bad" things that were highlighted in both the autism and ADD reports were mostly stims/fidgets, things I didn't even realize I was doing but that were absolutely necessary for my ability to function.
I’m so happy for you that you have it more figured out now. ❤️ It doesn’t take away from the challenges but it gives us words to describe our experience at least and understand how we can support ourselves better.
Very relatable. I'm autistic with adhd inattentive type, & I also have cptsd, bpd, osdd, ocd, ME & APS 😢 I think alot of it is connected to the undiagnosed audhd & masking my whole life.
I’m sorry to hear that you have all that going on. I can relate but I’m so glad we are here to support one another. The masking and the harm that comes from it is still something I’m exploring. It’s a tangled confusing web but I’m trying each day to heal. I hope you find healing as well.
The feels 😢😮😊 glad I have found you…..masking r us
Haha, me too I’m glad you are here. ❤️
I've been able to fix a lot of my symptoms through a keto/carnivore diet and regular physical exercise. I've also refused to let it define who I am as a person, there may not be a cure for autism but I'll be damned if I make it my identity.
That’s awesome! I find my AuDHD symptoms heavily correlate with my gut health. I have personally followed keto/carnivore with less than optimal results. Mostly I follow the Perfect Health Diet (minus my allergens) and that works well for me at controlling physical and mental symptoms.
@@heatherinde that's great news, but as one autistic person to another, never let it rule your life or define you. Too many people in our community allow this condition to become them, they use it as a crutch, to demand special treatment and generally make the lives of those we've deemed "neurotypical" miserable. We are more than the labels, we are more than the disability, we are more.
@@OpEditorial Did I give you the impression that I am letting it rule my life?
I have 4 diagnoses and I feel that while a person might be disabled you can still be successful. I was thinking about suicide due to schizophrenia. I hope that this comment will inspire you or someone in the comment section that you CAN still be successful no matter what you have.
I’m glad you are still here with us and thanks for sharing your story. I completely agree disability does not equal automatic failure. We are out here living our lives doing the things…. Often successfully.
Thank you. Thank you for allowing yourself to be vulnerable. Your advocacy and empathy is extremely appreciated. As a chronic illness warrior myself I can completely relate to this video on so many levels. Looking forward to enjoying more of your channel. I also have a chronically ill artist teen so I will be suggesting your channel to them too. Gentle hugs to you.
I’m so glad to hear that you can relate and that my sharing is helpful to you and/or your daughter. That makes being vulnerable feel worth it. ❤️ Gentle hugs back.
Thank you for sharing yourself deeply
You’re welcome. Thanks for being here. ❤️
You’re welcome. Thanks for being here. ❤️
I too have MCAS, food allergies and have autism spectrum disorder. Oh and an artist!
MCAS, food allergies, autism spectrum disorder, and an artist: Its quite the character sheet right?!? I feel like these things so often go together. 🥂Here's to making life colorful and embracing our quirks!
Hi just found your videos. I am someone that follows other art minded people. Watching art techniques etc. The person behind that art is an important part of it, making connections with the person. This video is just showing a part of you and great respect for it. We should not have to hide the real true us. The special you shows through, thank you that's why I have subscribed.
Wow, I really appreciate hearing this. I feel exactly the same way. I love seeing behind the scenes and getting a wholistic view. I value seeing the whole person. However, I know I’m more curious than the average person and I wasn’t sure if other people would value it as much as I do. Thank you for subscribing and appreciating what I have to offer. 💛💛💛
ADHD symptoms can also stem from trauma.
That makes sense. I've often wondered that.
Right?!? I've also learned that anything messing with the nervous system can cause ADHD symptoms. The thing I find confusing is that trauma can come from the difficult experiences that come with being different, from being neurodivergent. It’s so hard to tell which came first, the chicken or the egg. It’s a tangled web. Haha. Luckily, from what I can tell from my limited research, many of the treatments that work for ADHD, work irregardless of whether the cause is organic or secondary.