Invisible Illness

[CrystalFaith100]

AMAZING job! This video truly is outstanding!! If you feel like answering, what was the music? ;D

[radlikemad]

@CrystalFaith100 thanks so much. it's called Everything Changes by Staind :)

[BlueberrySman]

really awsome video, im so glad i stumbled upon this video. it gave me clarity in a way i cant explain, so thank you.

By the way you are really pretty. :)

[3DMuse]

Hi, I suffer from Bradbury-Eggleston (a form of Pure autonomic failure/Dysautonomia), FMS, Asthma, and migraine syndrome and have for well over 20 yrs. I thought this was a great video, there are so many illness that this video speaks out for. Nice job, glad you decided to turn your boredom into something creative.

[mrahodgson1]

i love this video thanks for speaking up for people like you and me HUGZ

[utalice]

You got me with this one...very good. :)

I've lived with FMS for at least 10 yrs now and I feel helpless in conveying my pain and exhaustion to others. It hurts a lot when ...after all of this time (and information I've given), I still hear comments from family members who will tell me to just exercise or something else that I know doesn't help. It's very frustrating and painful.

THANK YOU for making this.

[TheLibra2767]

Great video. My bf of nearly 20yrs,has this 'invisable' disease MECFS and has done now for nearly 9yrs. Knowing him from then,till now,and the difference and suffering that it causes,I applaud you on this video. MECFS is REAL,thks for vid. ;) #MECFS

[GetWellFromME]

Really powerful video, thank you!

[LiveLoveLaugh031]

I'm turning 15 next month and just got diagnosed with POTS last April. For 3 years I had the pleasure of being told it's all in my head or that I'm faking it for attention. I decided to search up POTS Syndrome and found your video. It's nice to know that I'm not the only one that's been through all of the hundreds of doctors appointments and have been told that there's no reason for me to miss any school. I just wanted to say thank you for this video[:

[CheyLovesSoftball]

This Video Was Soooo Good. Made Me Cry. I've Been Told My Some Of My Own Family Members I Was Making All My Symptoms Up For Attention. I Will Defiantly Be Sharing This!

[crazygeo81]

Nice video ! Gives hope. I have Lupus myself .  It also has no cure. HOPE IS NEEDED !

[GustaMapache]

this is gorgeous. what cam did you film this with?

[yewwtube]

your so beautiful and talented.. xx

[corky4343]

Very Awesome video I to have P.O.T.S, S.V.T, and other condtion steming from that. 5*

[laserlion77]

This is awesome! I wish people would just understand. I don't even have a concrete diagnosis. First it was Reflex Neurovascular Dystrophy then it was Fibromyalgia then it was Chronic Fatigue syndrome and then the doctors freaked and told me I was making it up and I wanted attention. Sometimes I just want to cry because no one believes me =/.

[aktion13f14]

You did an awesome job with this. Thanks!

[DysautonomiaMD]

You have done so very much for dysautonomia/POTS awareness. Wishing you a Happy Holiday Season and hope that 2011 brings another burst of awareness!!

Keep up the good job! :-)

[amandahord09]

I just cried for the entire video. Ive had the symptoms of POTS for about a year. Im going for my tilt table soon. My doctor says he has no doubt it's POTS. This video is absolutely wonderful and it is exactly how I feel! I have two children and I've sat and cried because my three year old wanted to go out and play and I was just so tired I couldn't take her. Thank you so much!

[radlikemad]

@amandahord09 noo don't cry! i'm so glad you like it. and i have no doubt you are a great mom even when you can't go out and play :) hang in there xxo

[drgn420]

somethin I came across... butyoudontlooksick

[jujujoyseeker]

We have two invisible illnesses in our family--Endolymphatic Hydrops and CFS/ME. My sons are--like you--beautiful people and young. I hope this helps bring understanding to some people that make it so hard for you, brave girl :)

[radlikemad]

@jujujoyseeker thanks, and i hope both your sons feel better :)

[BeccerTehRecker]

this is phenomenal. it made me cry. I've had an invisible illnes for 4 years. Since I was 12. this is 1/4 of my life I've been in agony.

[radlikemad]

@BeccerTehRecker thank you so much <3

[vikkkilouise]

brilliant video, i have had ME for 14 years, thanks for raising awareness of invisible illnesses

[DAiiSYXO]

This is amazing, thank you for doing it!

[DysautonomiaMD]

Nice, and also true.

Hope the situation with Invisible Diseases can become a goal for the end of 2010...check out my last video for phone numbers.

We're starting with the American Society of Family Physicians and other basic, front-line doctors who have the potential to diagnose us first!

Wishing you well in all your endeavors, and keep on truckin'!

[radlikemad]

@DysautonomiaMD thanks so much margaret, hope you are well xxo

[DiaSceptic]

That's blinkin' ace work.

I've had diabetes for yonks and it's taken it's toll... Mostly through my own doing. Laziness. Ignorance. Call it what you will. So if I'd made this video I think I'd have had cards the size of a house with GUILT & REGRET written on it as well!

I know what's coming. Just not when. That scares the "wotsit" out of me. Not just for myself but my family as well. Probably more so.

Mine could have... SHOULD have been managed. To all those who have things that can't my hea

[tckbite]

I have Chronic Lyme Disease, almost 14 years now. You hit the feelings right on the nose of what its like to have a disease that people don't understand. Wish i'd had this video to show all who never seemed to 'get it' over the years. People think they know what its like but they don't, even those closest to you. They try until its gets to be to much. So just remember your not alone! Some of us do 'Get It'! Hang in there, here's hoping your good days are many, the bad days few and far between!!!

[TheBeatlesFiddler]

This was fantastic! The second it was over, I posted it to my Facebook wall! :) Take care!

-Lauren

[radlikemad]

@TheBeatlesFiddler thanks so much lauren <3

[mismelissa312]

Thank you for posting this. My best friend has POTS and a few other things, I know it's rough. I do what I can for him.

[radlikemad]

@mismelissa312 thank you for being there for him. that's more than enough :)

[TSalmons23]

Wow, i think u just fell in love with you. Keep up the good work :-)

[radlikemad]

@TSalmons23 lmao thanks :P

[klsumpter]

That just made me cry. I have been having all these problems for a while and doctors and everyone seems to think that its nothing and every test always comes back fine so I have been doing my own research and have been finding this info about POTS and I really think this is my problem. Now if someone would just listen. Thank you for sharing this and spreading the word. If it wasn't for you and others I would have never found what this disease is.

[radlikemad]

@klsumpter thank you! and i hope you're able to find a doctor that actually listens. i know how hard it can be. but stay strong and keep fighting and you'll get there :) xxo

[OkoPeeKee]

Fantastic video!! Love it!!

[radlikemad]

@OkoPeeKee thank you!

[Potsgirl22]

I LOVE this video! It explains EVERYTHING and its very creative! :) keep posting to make a difference! :)

[radlikemad]

@Potsgirl22 so glad you liked it :D

[littlemissb2010]

@radlikemad

Great video. I have CFS, and look well, and this touched on so many points. I'd add "it's in your head" to the post-its!

Thanks

[SashaLily11]

I Loove This Video, It Made Me Cry!

To Know Someone Feels The Same Way Is Awesome, And It Is So Creative.

Good Work

[radlikemad]

@SashaLily11 thank you :)

[DrFrankyDolan]

Wow

I have to tell you-- I am unbelievably impressed with you. And inspired!

Thank you, my friend. We need to keep raising awareness about our Invisible Diseases!

Sending you love ~~~

[radlikemad]

@DrFrankyDolan thank you so much franky! and yes we do!

[Stacey31233]

I absolutely loved this :) Well done, spot on too how I feel with having POTS, I'm only 17 and I've had it for the last 6 years and it's so annoying! But great video :)

Stacey xoxo

[star382000]

I feel tears coming on. This is beautiful &hearts;

[radlikemad]

@star382000 thank you <3

[bionyx86]

Awesome. When you've had a day like I had today... this is how i feel... you nailed it in a VERY creative way! I Love IT!

[shaynaokane]

It is weird, that even universal, people get called the names you just showed up when no one knows what is wrong!

[vengrand78]

This is a great video . Everybody should watch this . 5 ***** but it deserve 10**********

[SharkBateNait]

hmm, writing on paper in a video, what a great idea!

[TheDysautonomiaGirl]

Shannon, I watched this the day you uploaded it but didn't have to time to comment. You did a wonderful job! I fought back tears the entire time!!

Thank you!

[chronicallykyli]

Amazing video!!! Almost brought me to tears. (hugs) You are so talented!!!

[carolann64]

Beautiful Video! I have Fibromyalgia, and I go through the exact same symptoms as you had on your sticky notes. The dr's treat me like I'm a nut job. its so very frustrating and it hurts. Thank you for taking your time to make this.

♥

[hopefulhillary]

another masterpiece! you keep making me cry shannon! stop it! LOL just kidding. dont stop - keep up the good work. WE WILL BE HEARD. WE ARE NOT INVISIBLE! thinking of you girl. <3<3<3

[DYSAUTONOMIAGIRL]

Shannon, I watched this in the library as I was studying and totally just shut down and cried my eyes out in front of everyone as they were studying. I've NEVER cried in front of people like that before. But, it was a cry of relief. Finally, this was the kinda thing I've been trying to tell so many people for so long... And you did it :') Thank you. Really. You're amazing, girl.

[Pacerjames]

Aw! I know how you feel my friend. I've been sick like this as well. Ignored by Doctor's because they can't see anything wrong with a young person having feelings such as the ones your expressing here. May your inner voice be heard throughout the heavens my friend. God bless you and I hope you feel better.

[leoktty]

I loved it!! Great idea using sticky notes.

[ashpauls]

loved it :)

[TNAD0MINAT0R]

I don't know if we will ever see a day when invisible illnesses are taken seriously by the general public. I am optimistic, but the realist in me sees a world that just carries on with or without us.

I have the skills to lead the movement but my attempts to gather support have met with failure so I just stick to running the group and watch it grow.

If you want me to step things up then we should talk about it. You know how I feel about this and I think we need to go way outside the box.

[dancingsunbeams]

Great video- the simplicity is touching and brought a tear to my eye. I'm sure many more will see it and be similarly moved.

I had a little laugh at "Just stressed" though- a laugh of understanding because when Drs have said that to me (too many times to remember) THAT made me so stressed I wanted to wring their necks!!

[silentheaven]

Shan, this is the most creative, useful and touching video you've ever made. :)

I liked the way you're sending the message in 1:41 and with the smile at 2:27, and loved the way you used post-its.

Ah, and you got to tell me the title of the song you used.

I know that it's sounds stupid to say, but don't ever feel worthless, you'll never be that.

-Vincenzo (..waiting for your message on FB! :D)

[radlikemad]

Thanks Vincenzo! and that facebook message has been sent! lol! the song in the video is called "Everything Changes" and it's by Staind.

[BrokenRT]

This has to be one of the best videos I have seen on YouTube and I can't wait to tell others about it. I can feel and understand everything you are trying to get across here. I share the same frustrations and not only been in the same boat as you but been living in it for a year now. I was told I was going crazy by the docs I had worked side by side with for the last 7 years. I was even friends with some of them.

Cont---> next post

[BrokenRT]

After the 7th time in less than 4 months being hospitalized and sent from AZ to MD by air-abulance did they diagnose the POTS. I suffer from a few other Autoimmune things and still getting the run around but it it's self is so disabling. Only one doc I have seen out of the few I frequent and bunch I been to since diagnosed with it know what it is. The video was very creative and warm to see I loved it and like I said I cant wait to share it with others.

[radlikemad]

Thank you so much for your comment. it made my day :) i am so sorry to hear what you've been through. but know that you aren't alone in this! you're story is so much like the rest of ours, and until awareness is spread, there will be many more with our story to come. i hope you are feeling better, and i will be thinking and praying for you!!

[ChanShelly]

I love it! You really got the message across, and I like how you used post its...very creative. I hope this gets seen :)

[radlikemad]

Thanks so much :) the post it's were the only thing that i could think of that would be easy, 'cause i didn't have to do any paper cutting etc haha