I feel like alot of people think that mental disabilties are often just not a thing. its like you get so often comments that one chose this and that there are people out there who are really sick. I dont think anybody out there would choose a mental illness and alot the symptoms you described could apply to people who have major depression or other mental sicknesses. and often I get people telling me I should be lucky for not being sick but when I think about it I have been in and out of hospitals so many times, have to take meds every day, struggled so much and still mental disabilties are considered a choice. it makes me so mad when people tell others what they can and what they cant do.

I love how considered you are and how well you convey what really needs to be said. You're doing so much good! x x

@HotPinkSun

8 жыл бұрын

+Lauren Ivry

Damn, how rude. I'm pierced and tattooed as well, can read, see, hear and walk (most of the time.) But I also have 2 auto-immune diseases and a central nervous system disorder, plus trigeminal neuralgia in my face (which is considered to be one of the most painful conditions a human can experience and is so awful it's nicknamed "suicide disease" because so many people who get it end up killing themselves.) My doctors and the government consider me plenty disabled, and though I have good days, I have far more days where I can barely get out of bed and need a cane to walk, and every day requires medication to get through. I'd like to know exactly where it's written that people who are disabled must suffer and be miserable 100% of the time, and are not allowed to ever do anything even slightly fun or personally rewarding. I got my piercings BEFORE I got sick, and the tattoos were gifts. It doesn't take much effort to sit down at a tattoo shop and let someone give you a tattoo. The amount of pain that I am in on a daily basis means that the pain of getting a tattoo is literally a drop in the bucket for me. So how does that have any bearing on my being disabled exactly? And how is it anybody else's business exactly? Becoming disabled doesn't mean I stopped being a human being, with human emotions and desires. Apparently once you are disabled you are just meant to curl up in a dark corner so nobody else has to see you and stay there alone until you die? O.o

I was born with Spina Bifida, hydro, scoliosis, am a fulltime wheelchair user and I have a tattoo. I have no idea what having a tattoo has to do with also having a disability. Also, when I was younger, I user to be able to get onto bunk beds and counter tops. Still paraplegic, still disabled. People are stupid!!

@jaydeepaquette1264

8 жыл бұрын

+Lisa M I know, and I'm in the same boat! I don't have a tattoo, (too chicken haha) but I have spina bifida, and though I have limited mobility, I'm not completely immobile and can move.....decently enough to adapt, I suppose, using my wheelchair as the main mode of transportation. I read that part about the tattoo and the pierced ears and I just started laughing.

@EveryDayALittleDeath

8 жыл бұрын

I think the tattoo thing had to with some people with disabilities needing regular tests, like MRIs, where the tattoos can mess up the tests. but there are so, so many disabilities that don't require that kind of testing, that it makes zero sense that no one who's disabled can have a tattoo

@jaydeepaquette1264

8 жыл бұрын

Raye J The only thing I could see being a medically-related issue when it comes to tattoos is if the disabled person in question possess a shunt and they want to get a tattoo on their head, neck or perhaps stomach (in case the shunt was also implanted with extra tubing. I've got extra-tubing myself for my shunt and they put it near my stomach).

@princ3ssc0wboy

7 жыл бұрын

ya thats a ridiculous claim! I have an autoimmune disease and am actually not able to get tattoos or piercings at the moment due to the strong likelihood of infection and also slow healing but saying that's like an entrance requirement into the disabled community is insane. also I have upwards of 15 tattoos I got before i was sick, so by looking at me you wouldn't know I can't anymore XD

@heatherelle4404

7 жыл бұрын

Molly Moon, hope this helps: I have a few autoimmune conditions and have been on some combo of TNF Blockers/Biologics (Embrel, Humira, Cimzia, & Cosentyx) plus steroids. I just got my first tattoo in ten years (three tatts total now). I was strongly persuaded to not get one (or any piercings for that matter) by my rheumatologist. After being in a dark place for awhile I decided to say "screw it" it's my body & I want to like what I see when I look in the mirror (not see just scars, an ugly/hideous reminder of every surgery & misdiagnosis and subsequent diagnosises). I am happy to report that it healed beautifully w/ no complications. my advice: above all make sure it's a clean & reputable place, pick an area (if possible) w/ good blood flow (just in case something happens and you need antibiotics. Hopefully this helps a little and you get some awesome ink!

I don't really consider myself personally disabled, but I do have anxiety mixed with seasonal depression and it does affect my life a lot. It's one of those things that people don't understand, getting a job/going to school/socializing can just drain me or sometimes I can't manage it at all. I do like your videos because I do relate to a lot of it :)

Thank you for saying this. Every time I say that my ARFID is a disability, I always get someone saying "picky eating isn't a disability". Dude, I had to DROP OUT OF COLLEGE and move back home into an abusive environment just so I wouldn't starve to death. I've lived most of my life alternating between a malnourished mental fog and volatile hangriness that nearly made the public school system officially classify me as emotionally disturbed. I face blood frequent blood sugar complications similar to what someone with diabetes would. My menstrual cycle is severely fucked up from malnourishment and I could probably never have kids.

Thanks for this video. I can totally relate. I've lost quite a few friends since I got ill again almost three years ago - well I guess they weren't really friends in the first place. What happened to me started as something common and simple to treat, but because of previous health issues became life threatening to the point where I couldn't even leave my house last winter for 6 months except for 2 doctor's appointments. People had to go shopping for food for me because if I even went to the store, I'd end up in bed for 5 days unable to shower or prepare food, with no one at all around to help me, so I'd just lay in bed and starve. I got down to 92 pounds and I am 5'3''. Anyway, during that time, people would tell me, "omg, you have (the simple thing that started this). Look, everyone's struggling and has to work, why should anyone help you? You should get up off your ass and work." Some people will never understand, no matter how much you try and explain. I've lost a lot of people in my life these last few years, and it sucks because I can't even hardly get out anywhere to meet any new friends. People have NO idea what you struggle with when you're alone. You put on your best face when you see people, which is usually when you actually have the energy to get out, and then when you return home and can't get out of bed and are in a ton of pain, they aren't there to see that. Thanks again for this video.

I hope you're aware of how much good you do to so many people with disabilities, visible or invisible, major or minor, with your videos and your ability to speak out clearly and with understanding. Really love that you're doing these. I have a question, though....around 3:28-3:40, you speak of mourning losses due to your disability and trying to change your outlook on life. I am a person who suffers from severe depression, and it (excuse the term) cripples me on pretty much a daily basis. I'm 23 years old, almost 24 and for more than ten years I've had extreme difficulties related to accepting being disabled and accepting that I can't live a "normal" life as my peers do. I never had friends in school or people I could talk to about issues relating to disability, I was ostracized and treated like I was diseased because of my use of a wheelchair, had medical issues all throughout the last near-13 years that has taken away from my schooling stemming from spina bifida, I never went to prom or graduation because of these, I graduated at 20 instead of 17, I can't get normal job like every one else because of my disability.....long story short, I haven't been able to come to terms with...me and how I can't live "normally". How do you try to deal with mourning your losses and trying to keep positive and remain comfortable and able to deal with the fact that you have a disability? I realize this may be a really weighted question, I just wanted to know your stance on this kind of issue. Thanks.

@HotPinkSun

8 жыл бұрын

+Jaydee Paquette Thank you for the kind words and checking out my videos

I just found you through another youtuber and I think I'm about to cry because I just get you so much you know? its mostly family members saying how young I am and I shouldn't have to deal with this, and them expecting so much out of me and I feel like such a disappointment to be disabled. but I guess you just gotta live with what your born with. anyways good luck in life and I hope you go very far!!!!!!!! ily!!!!

@HotPinkSun

8 жыл бұрын

+Hope Hooper

You have the wisdom and the strength to deal with your condition and your youtube channel is very helping to people keep up the good work and be strong and happy no matter what ! Take care

Ahh.. You're so beautiful and sweet! I'm so glad I found your channel. ^_^ I was diagnosed with Ehlers Danlos Syndrome three years ago and been really struggling for a long time... so, it's nice watching your videos and realizing you're not alone in a lot of things. I've had some awful comments because a lot of people don't seem to get that invisible disabilities are just that.. fucking invisible. Just because I'm smiling or able to walk today doesn't mean I'm not in absolute agony. Anyway! Thanks so much for your videos.. I really love them!

@HotPinkSun

8 жыл бұрын

+piercedandprettyhol

I always enjoy your videos and I really like the conversations that you are starting and issues you are addressing here. Keep it up and hopefully those kinds of comments will start to fade away, but I guess that can only happen if they actually listen to what you are saying in these videos. Hope you are enjoying your break and taking advantage of it!

You are so awesome. I admire your maturity and strength. You are a beautiful woman. Keep fighting. God bless you.

Yes having this kind of condition is extremely mind-boggling. One day people try to encourage me that I am not disabled because it is labelled as a negative remark. I too am pretty afraid to label myself as so because I believe I am able in order to have a different ability. It is very unfortunate that we may not received much empathy we deserve because it cannot be seen nor exactly proven. As much as you cry, people may not get it. It gets tiring to try to make people understand. I agree with you, we have to reaffirm our mental strength to cope with this. You have to be very clever at communicating your concerns. Keep holding on, I'm glad you're very brave.

Heyyyy there. Thanks for saying what I often can’t articulate mid flareup ....or simply have grown too exhausted to fuckin explain anymore. I love your channel and it’s been really helpful using your vlog to send people who ask me the dreaded “omg, how have u been? I haven’t heard from u in forever!” that I so often get from well intentioned but clueless friends. Btw, I sent u an IG DM. Thanks for taking the time to make these and answer all those questions that seem to never end! 😉

I have eds too it's hard that's it invisible because no one believes me, not even some doctors. I have been dealing with this my whole life and only 5 years ago I was diagnosed. The pain I feel is more than any normal person could know. I do ballet and I do have to sit out a lot but I still push my self to build strength and try to live a normal life even if I'm in pain.

I asked my Dr (who normally believes my pain and is super helpful) for a parking placard. He says "I normally don't recommend parking placards to those with Fibromyalgia (he diagnosed me with hEDS too so I don't know if he's changed his mind) because it will lead to them thinking they are disabled." I wrote a two page response to him about how I may not be disabled to his definition but I am according to ADA and the fact that I have a hard time going to the store and opening doors, reaching, lifting, pushing, pulling. I also said that of course I was thinking of the placard as temporary until if when PT does improve my mobility. Parking and having to walk far when I can't afford a scooter like the one you have is a huge pain in the fucking ass and it really really irks me that the one person who I thought would understand was not supportive. Anyway /rantover and btw sometimes my shoulder pops when I wave hi so that made me chuckle in a "funny but ouch" way

@HotPinkSun

5 жыл бұрын

Dangeresque Mustachio sending you love.

@ck5551

6 ай бұрын

Good on you for responding to your doctor with your two-page response! I have had many doctors say ridiculous ableist things to me and I have never said anything back to them until recently. It's very difficult because they are in a position of power over you and many doctors abuse this power.

I really enjoy your videos. :)

@HotPinkSun

8 жыл бұрын

Thank you! :)

Hi Sweetie, Sending Hugs & Love!!!!!!! Stay strong Hun, Happy Holidays!!!!!!!!!! I've been disabled & denied 4 over 6yrs & In pain 24/7...... Worked my whole life n Just don't understand the B.S....... Who The FUNK CAN JUDGE ANYONE ELSE?!?!?!?!?!? PEOPLE ARE STUPID & I JUST STICK TO MYSELF AND THOSE I LOVE..... I DON'T JUDGE PPL...... I IGNORE THE IDIOTS ♡♥♡♥♡♥♡♥♡♥♡♥♡♥♡♥♡♥

@nobodyspecial3325

7 жыл бұрын

Cherokee M that's nice

I just subbed! The comment that amoeba wrote to you is complete bullshit. I am paralyzed on my left side and have a tattoo and piercings, this has nothing to do with being able bodied or not, we gotta live the life we've been dealt! Thank you for your positivity 👍

Do I count as disabled? I have JHS. I’m in very bad constant pain in every joint and muscle everyday, every second, and I have trouble doing basic tasks (walking, climbing stairs, brushing hair, writing, standing for too long, remembering things etc,) and I have chronic fatigue. Im talking to my rheumatologist, physiotherapist and OT about elbow crutches, but right now I don’t use any. I never know if I’m allowed to call myself disabled because I can do a lot of things (even tho I’m in bad pain even when siting and doing anything), so my question is: would it be offensive/wrong to call myself disabled?

There are people with down syndrome who can read they can write they can lift weights my brother was born with severe scoliosis, had his back cut open butterfly style 2 metal rods inserted on the sides of his spine attached to metal hooks drilled into hip bones & shoulder blades when he was 11, the doctors gave him until the age of 19 because his torso could no longer grow yet that wont stop his organs from growing basically crushing him to death from. the inside. He was on varsity soccer & is now 36yrs old. People are ignorant buttholes who think they are righting some invisible wrong but all they are really doing is proving how little they do know. I got gillian barre syndrome right before my 18th bday, in 24hrs went from completely normal teen to couldnt even hold a cup by myself. Theres no cure all, all you can do is pray the meds work & that you never relapse, but i will still never be the same, i have all kinds of limitations but i look normal, never know it unless i tell people. just because i dont have a tag in my car allowing me to park wherever doesnt mean i cant easily get one, just because i go jogging every morning dosnt mean its easy, not a huge risk, or that with any step i could slip back into full paralysis. people need to pluck their heads out their own rears, there are many many kinds of disabilities & its ridiculous to assume they know each & every one of them. just shut up & be happy its not you.

you should put some funky jazz music in the background cx

YAAAAAAS

DISABLED (Adjective) Having a physical or mental condition that limits their movements, senses, or activities. "facilities for disabled people"

See Ive had such a difficult time with labeling myself as disabled because although what I have limits me in many ways, I can do anything that able bodied people can do, for the most part. I am very physically fit, probably more than most people which has helped with what I have. I am a tough ass kickboxer who can probably beat the crap out of someone bigger than me (not that I would) and yet I cant even have a late night without suffering consequences in the morning. My energy levels are consistently low and I feel like Im always running on half fuel. A lot of people think Im lazy because I dont want to do things, but honestly I feel like my laziness is a way of protecting myself before I burn out

@Katyayanibetha

8 жыл бұрын

+Jane Doe I can relate to you, but you're not lazy. This society has warped values. Lazy is when you can do something and you won't. If anyone studies how the body works and how much it's doing all the time to repair itself, you'd see that when you rest, you're not lazy, your body is working damn hard! I am like you in that I am very fit, and I can do a lot of physical activity - until I get exposed to something in the environment that literally causes the tissues inside my head and on my face, neck and in my respiratory tract to start decomposing while I"m still alive. No one sees how hard I work to keep this from happening all the time. I do consider myself disabled, because I cannot work in most environments, I can't go around in most environments, and it greatly limits and hinders my life. If I didn't have to work, I may not consider myself to be disabled, because I'd have money and would just go where I wanted. However, being that I don't have anyone to depend on but myself and have to work, it greatly disables me, because I can lose everything and become homeless from not being able to find an environment that I can work in, or if something comes into my work environment that I can't be around. It's been so very difficult to be someone who is so capable who is so limited. It's almost a curse to be able to be so disciplined and take care of yourself so well too, because you're always on edge, working insanely hard to be ok, but you keep yourself ok when people see you, so they think nothing's wrong. Sometimes I've been so frustrated that I've wanted to go off of my disciplined diet and all the myriad of things I have to do okay to keep my flesh on my bones, just so people could see what I'm dealing with and maybe help me, cause this is way too hard to deal with ALL alone with no parents or family or anyone to be of assistance in any way. It would only take a couple months for me to be well and not have to deal with this anymore either, if I could just get the treatment that I need. Trying so hard to make that happen. Good luck to you!

How do you get energy to film and edit? I'm trying to get my channel off the ground (not this one) but after filming it seems to take weeks to find a day I have energy to edit, and at that point the things I was doing/talking about aren't on trend anymore, I get so frustrated

@HotPinkSun

8 жыл бұрын

+Erszabet aw :( That's frustrating. Sometimes I film and edit on the same day, but other times I don't. When I film I shoot in long blocks (so for each finalized youtube video theres about two ten minute clips that I have to edit down) and basically when there's something I say that I think is really worth including I'll look directly into the camera, otherwise I'm looking to the side. For me this helps me with the amount of time it takes to edit because I just go in on final cut and remove all of the footage where I'm not looking into the camera. Also, I usually edit in bed with my laptop aha :)

Can you do a Q&A video?

@HotPinkSun

8 жыл бұрын

+Sarahnewks If there are enough questions that pop up then I'll do one eventually :)

The comment from that person made me mad. Clearly STILL not enough awareness is being spread! Very upsetting

Hi I'm 15 and I have M.E/CFS. Has anyone tried the pacing method. Me and my family are really struggling to adapt to this. I hate having to choose whether to do something productive or something fun. If anyone can give some tips it will be greatly appreciated!

@HotPinkSun

8 жыл бұрын

+Heather Wisely Ugh I feel this, especially since there's so much pressure to do the productive things :( What has helped me in the past with pacing was to always write down what my intentions were for the day and if it looked like it was way too much or much more than I can handle then I would move things around ensure I had planned time to rest. The most important advice I received was to make sure I didn't over do it on my relatively good days even if I felt like I could do more because that generally tends to set me up to have a bad day the following day.

@heatherwisely6711

8 жыл бұрын

+HotPinkSun thank you so much for replying. I'm so glad someone understands how frustrating an invisible illness is. I've never heard of the list but I'm going to give it a shot that's actually a very good idea. I've always been a very high achiever and it might help me feel a bit more positive. thanks again!

I love you R. A.!

@HotPinkSun

8 жыл бұрын

+Deepin210

Soooo uhh does celiac disease counts as a disabilaty?And what about ashma?

@HotPinkSun

8 жыл бұрын

+Kat Tachibana They could. If you're disabled then you're disabled. Do those conditions disable you? Do they prevent you from going about your daily activities? Have you had to alter your lifestyle due to the conditions? Are you housebound because your celiac disease and asthma are severe? Do they stop you from working or maintaining relationships? Are you unable to care for yourself due to your conditions? etc.

@kattachibana7932

8 жыл бұрын

HotPinkSun well with asthma is not really.Sure i can't run for shit i sometimes i have trouble breathing but it's not too often.With celiac disease the thing is that if don't follow the strick diet it can werck your life very badly.

@HotPinkSun

8 жыл бұрын

+Kat Tachibana Yes but if you're just making an adjustment in your diet and you're otherwise living unaffected by symptoms then the condition doesn't disable you. Although you're absolutely right, people with celiac who don't know they have celiac and aren't following a special diet can experience disabling symptoms from that illness.

@kattachibana7932

8 жыл бұрын

HotPinkSun or a wile after that.I've been on my diet for almost six years and my imune sistem only now is recoverd fully.

@kattachibana7932

8 жыл бұрын

HotPinkSun also big thanks for responding^^

I think that if you're going to talk so much of disability, you should have enough disability pride to be transparent. This is not as a diss or to be negative or overly critical but I just started a channel of my own to talk about my own disability and share my knowledge and learn from and of others.

@HotPinkSun

5 жыл бұрын

I am in later videos, but you missed the point of this video then! I intentionally didn’t want to be so to not exclude people living as undiagnosed.