It's never lupus

Hi ! I'm Octavia from Brooklyn, NY. I also have Lupus since 1999. I just came back from the Lupus Summit in Washington DC. And it was great!!! 💜💜💜

Thank you for hosting this, I had a great time! <3

Thanks

I just wanted to say thank you so much for taking your time and ❤️ and everything you continue to do ❣️ i have lupus ive been going through hell 😢 Stress, depression make me very 3 x sick severe fatigue 😞

very good video - learnt a lot.

Thank you, once again, for allowing me to share my story with lupus to help others. The work you do, LUPUS UK, is fantastic <3

That video I understand it, but that’s really nothing people with lupus. That’s really nothing. The people was learning disability. It’s something it’s horrible stressful I mean people get tired people get pain no matter what you get older you get hurt your bones hurt. It’s life you get tired that’s what happens. Most people lose hair. Some people might have that for jeans and also, if you’re losing your strength, maybe you’re overworking yourself up medicine to hear that people with learning disability there’s no medicine and there’s no cure people who can’t with learning disability. They can’t hard time reading math doing some driving and getting some more jobs but really lupus and also people with rashes. I mean to me it’s really nothing I’d rather have that than on a learning disability. I really rather have lupus than my disability. I actually have that problem. I’ve been diagnosed it when I was a baby, but lupus is really nothing to me. People should take notes about people with learning disability too people out there are suffering, and there’s surprise that it’s not aware of that but people are more aware of lupus. It’s really nothing to me. You can read you can you can you can get different jobs to me that is normalhonestly it’s nothing to me

How many people are here under immense stress that snapped when it said "manage stress' while watching one of the most stressful videos of their lives?

Take the kid out of there.

Should Have Been An MLA, A Brilliant Man And Very Nice To Talk To,Not ONCE Did He Make Me Feel Inferior Or stupid Top Notch Number One THANKS AGAIN

Wtfu, this is not food🗣️🔥💯

Sous titre français

I know its going to be a rough day when the wave of crushing exhaustion hits right before noon, and the pain feels like knives being shoved under my kneecaps, my arms feel like burning pulled pork, and the top of my head hit with a hammer. Its like hellraiser levels of torture

You can claim PIP up until you claim state pension so its now 66 or 67 depending on your date of birth.

The d w p say that l don't need p I p even though in 2012 when someone shone a lazer torch into my right eye and l suffered a detached retina!!! They gave me 0 0 0 saying that in my daily living , such as travel and planning my journeys that l didn't need ANY help or assistance. So l don't understand why l have to take a taxi and having to getting the driver to have to assist me at the beginning and end of my journey. Also not being able to see l can't prepare and cook a meal unaided. Even though in trying to chop or peel vegetables l cut myself. The d w p tell me l need absolutely NO help or assistance assistance. The fact is that l am blind in my right eye and struggle to see and cope every day

PIP dont understand or accommodate for visually compared people who are not able to use IT equipment, How do we get help?

What do you do when the assessor lied on the claim?

That's so true about schools lying about the children who need help.

Thank u

What’s so freaky to me about this video and my own diagnosis is that 10 years ago or so, when the symptoms started to get aggressive and I had no idea what was going on, I would doodle and art journal this wolf demon that no one could see but me and he was constantly torturing me…then…10 years later diagnosed with Lupus…like he was sitting there all smug and happy about it, trolling me that he was indeed, truly there. 🐺

Just great workout when you're feeling the lupus monster as I call it

I felt like this dismorning

I’ve been on the couch for two days in and out of sleep. I feel like I could hibernate for a month. People really don’t understand unless they’re one of us.

more of a nuisance than anything else cost me years of my life and robed my future

To many of us have this awful dreadful lupus. I've been struggling with it for so many years & now. I'm now in end stage kidney failure. I was told by doctors that I would never see my 30th birthday, but in a couple weeks, I'll be 66. I know I don't have a lot of time left. I've been recessatated 7 times, but there won't be an 8th. I've placed my life in God's hands, so I'm not worried about where I'm spending eternity. I don't know what else to say except I pray everyone with lupus will find peace. God's blessings to all!

Thank u sis for the tips 🫶🙏💖

Hi there, the host, y r u a white presenting mixed race. I don't see wat the point is.

Is there anyone who will help me? My ANA is negative, anti ds dna, crp, protein in urine is all normal.creatinine in blood also normal.but i have anemia,platelets and WBC are normal.Hb is 10.66.but i have low grade fever,knee pain(not so much high), i take calcium for 2 months but it is not totally cured.But the pain is little bit lessen.but recently i also feel the pain on my left hand joint.i have no rashes in my body,no sunlight related problem.But when it is winter i can see red spot on my leg,in summer the red spot becomes vanished.Doctor said i have no lupus.but I'm little bit worried about that.My ESR level is 33.😢😢😢

My husband got a standard rate for daily living as he got 11 points. I am wondering if he could get a higher rate from back date as he also got mental health issues from last year.

Can't tay it anymore

wow your lovely x

That's pretty much the deal

Hello . Thank you for the useful information. Please put the translation in Farsi as well.❤❤❤❤

❤❤❤❤ thanks

We know your white. Get on with it .

I need the video

thankyou for showing other people what it is really like. im literally sat in my bed in tears crying because everyone around me thinks im lazy or unmotivated whenever i have trouble getting up for school in the morning - missing days here and there. it is just so fucking frustrating sometimes feeling so extremely tired all the time - especially in the morning. like i cant do stuff as quick as my classmates. it doesn't work like that , i dont work like that. and im learning to accept and love myself for it.

If they ask you the same question in a different way what do you say for that question.

Why are they allowed to get our medical records for free and we got to pay for them.

The face to face assessment is like a execution. They scrutinise you the minute you walk in the building.

whats with the ethic chat who cares what you are worlds gone crazy

This is a tremendous resource, thank you guys for making this available for free

I was diagnosed when I was 15; I'm 41 now. I've lived with Lupus longer than I have without and have grown accustomed to masking how I'm actually feeling. As a bloke, it's difficult to express my mindset without being questioned, so I just 'man up' and get on with it. Recently it's been getting worse and I'm finding it harder to mask. Because throughout my life I've actively tried to hide the severity of my condition, people are, understandably, less sympathetic to how I'm actually feeling... Maybe I need to stop pretending and laughing things off... Although that's the only coping method I can think of that stops me from being depressed. I'll figure it out. Thanks to anyone who read my essay lol hope your Lupus journey treats you well.

This is so me. The part where she walks outside and looks fine...but people dont see all the suffering she goes thru.

It’s never lupus

🙄 'Promosm'

This support resource is greatly appreciated. However, the water sounds are very triggering of sensory overwhelm and make it difficult to hear and follow the instructor. Perhaps a professional sound expert can offer a suitable solution to improving these very welcome resources for our community.

Hi is there a way to contact Louise?

❤❤❤❤😊