LUPUS: An Invisible Monster
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- Опубликовано: 1 июн 2024
- Lupus is a disease where the immune system becomes over-active. It is a chronic disease which affects one or many tissues of the body; skin, joints, muscles, blood vessels, blood cells, brain and nerves etc. Inflammatory and immune responses account for many of the symptoms observed in lupus.
Due to its many varied and often invisible symptoms, lupus can be very difficult to diagnose. It currently takes an average of 7.5 years for a patient to reach diagnosis.
Please share this video to help raise awareness of this condition.
You can learn more at www.lupusuk.org.uk
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This is exactly my experience with lupus especially the fatigue. People think I'm lazy or exaggerating but I legitimately cant push myself too hard or else I'll end up in bed for a whole day trying to recover. It's not easy at all and takes alot of patience and hard work to get back to a regular schedule :(
Yea.. when people pick and choose when to be sick you know they are faking it: not saying you are
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.
We need to get this on tv man
Yyyyyyeeeessss agreed agreed
It seems no one really understands------because we look good----hardly anyone understands & most don't take time to find out what's going on.
people tend to JUDGE us by how we look. I woldn't want anyone to have to walk one day in my shoes !!!!
This was the first video I shared with my husband to help explain how I feel every single day
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!
I was just diagnosed Tuesday. After a year and a half they finally figured out what was wrong with me. June 7th I’m getting my foot ankle and Achilles’ tendon repaired. I’ve never felt so awful in my life. This is crippling I’m 39 and feel 139. I wish my family understood how I feel. I was told plantar fasciitis for the longest time. I can usually push through and power through anything but lupus is a whole new ball game.
Literally my life explained in 2minutes.
id share it on facebook looks horrible but it is 100%true
If only my body on the outside could accurately display the way we feel, how life would be easier! Every inch of the body should look black and blue and battered. There should be a giant hazy cloud surrounding the head. Our legs should look like they're two feet below the ground while trying to walk. Visible question marks should float from our ears in confusion. Not even our closest loved ones could possibly understand the psychological side effects of dealing with what appears invisible to everyone around us. Thirty years of dealing with abandonment from friends, family, and even medical professionals takes a toll. Especially for the ones who don't want anything to do with narcotics, like me. There's not much more to offer.
My partner of 3 years has started calling me a lazy freeloader. I work full time as a nurse and have SLE. I have even had a kidney transplant because of it. He thinks I'm not doing my fair share of the house work, I know I am. I've told him that I only have enough energy or 'spoons' for a limited number of things. The more house work I do, the less rest and leisure time I will have. I keep telling him rest is really important but he keeps thinking I'm lazy. I'm so depressed. I wish he would understand. When I work full time in a demanding job and spend my days off cleaning and doing chores my life becomes miserable and lack of rest leads to my symptoms flaring and getting sore throbbing joints and awful fatigue. I'm so sad. Why can't people understand.
I can totally relate to this. I too have SLE and “had” a husband that wasn’t understanding about what the situation was. I was working as a RN for over 20 yrs with the same employer. I got diagnosed after we had our 2 children. He became increasingly more awful as the symptoms became worse. If your partner isn’t understanding and supportive at some point you have to have a serious discussion about how the negativity effects you and your own health. On top of that you are a kidney transplant recipient which also comes with extra considerations. Sometimes the partners we start out with at some point no long follow us as life changes our journey.
"I can't do things I used to enjoy before I was diagnosed."
People don't suddenly became debilitated with a diagnosis- then no diagnoses would ever be made. In fact, most people with chronic illness, especially women and POC, take around a decade to get a diagnosis, meaning it takes them years to get an explanation for why they feel the way they do and to get treatment. Living in a vat of discomfort without a diagnosis is a living Hell.
especially since they keep thinking you have other conditions which are very similar to lupus. it took almost 2 years before i got diagnosed
Yes i have lupus too . So painful . My life is not happy
This is best explanation for lupus that I've seen! The UK Lupus foundation is dead on point when depicting a lupus patients daily experience. As a lupus patient here in the US I want to say thank you for the clear and concise view of our daily experience!
Thank you so much for your feedback. We're really glad that you like the video. We had a lot of help and input from patients to ensure it was as true of a representation as possible, although with lupus being different for everyone, it can be difficult to get right.
No the UK is not dead on point, i have lupus, I hve had it since i was 18 and i was misdiagnosed (on purpose) for three years before any doctors gave a shit and then it took another 14 years before i was even given disability and even then, The UK hasn't done any of this because they don't care about ethnic minorities, there's only two lupus wards i should say and one is in St. Guys hospital and a small one in St. Thomas hospital, there isn't even a charity for lupus in the UK, every lupus support i have access to is based in the US. The Uk literally don't give a shit even the GP don't know much if anything about lupus especially the white GP there is no support what so ever for lupus in the UK, they give disability but even then the moment you remotely feel better the cut you off and say there's nothing wrong with you. The Uk basically built thier land off the backs of ethnic minorities and then act as if we dont exist, then they'll tell you the UK is not racist, even there Equality Act doesn't count for jack because when you apply for jobs the employers just tell you you were not selected or they just don't bother letting you know altogether, especially when you have discoid lupus to boot and you can see it on thier faces before they start the interview that there's no way they're giving you the job, qualified or not and you can't say anything because they'll use the fact that they even bothered to give you an interview as an excuse to say they practiced the Equality act on your behalf. If anyone going to comment that am wrong then count yourself as the only lucky one not one of the lucky ones, either that or your a white person with lupus because the UK does not care about lupus one bit, am not even going to go into social workers using this condition to mess up the little piece of mind you have left, especially when you have children. Don't be fooled, the UK does not care about enthnic minority lupus patients like that.
@@qgnfs5363 As a black person I know what it is like to be misdiagnosed with this disease. The same way you're ignored we are here as well. You all at least have specific facilities for lupus. We do not. You have universal health care we don't... So guess what I ended up going into debt as a result of being hospitalized though I have medical insurance. Ma'am I was just commenting their depiction of the disease because here in the US most medical professionals are still quite ignorant about lupus. And forget about applying for disability in this country you're immediately denied especially if you're someone of color.
@@qgnfs5363 Don't be mistaken, us black people here in the US are not living in medical opulence.
How did you get a diagnosis what signs did you have as I have all the symptoms she said she had I am seeing a rheumatologist in March and hoping I don't have arthritis has I have had these symptoms aswell as severe bone and swelling pains and stiffness almost tinman like
my fatigue is really bad
Please pray for my sister she is also a patient of Lupus and also it effects on her lungs,eyes,bones 😭😭😭😭
I diagnosed lupus 8years now .. And this year 2021 its trigger .I'm in pain again now
Thank you for this. I wish people see this more so that they understand how we feel!
Great video... it explains EXACTLY how I feel. But God is faithful. We shall conquer... TOGETHER WE STAND & FIGHT THIS CHRONIC ILLNESS. 💪🏾🙏🏾🙏🏾
In the name of the JUSUS CHRIST Amen.
@@mohankumartech8396Amen!!!! Jesus is the way the truth and the life. No one comes to the Father except through Him.
A great video in plain English for everybody who want to get useful information about Lupus. :) :) :)
Thanks for the video, very simple explanation where I could get my friends & family to understand my situation....it's exactly how I feel. Fatigue, tired all the time, aching body, rashes on face....etc.
I have Lupus. I was diagnosed with it months ago. It's difficult living with it however I do my best at keeping healthy and living with it.
I was diagnosed with lupus recently too (2 months ago). It's hard having that and sickle cell as well. I hope you're doing well~
@@maiyuriiii4674 Thx. I'm doing well. I hope you are too.
Very well done...... So so true everyone thinks we look ok therefore we should be ok. Thank you for making such a educational video I can share with my family to help them understand me more
Great videos. I shared them with my friends and they understood me much better now. Thank you! :)
Good for you, am nigerian and as far as nigerians are concerned or should i say black people in general if your not at death's door theres nothing wrong with you, they just assume your lazy, selfish, ungrateful, inconsiderate and short tempered, some even go as far as calling me mad or tell me i have a personality disorder (bipolar) am not going to go into the white society ( social workers, doctors, teachers and the white society at large) because if they can use lupus to destroy the little piece of mind you have.. They will. I dont know which is worse, your own native people treating you like your worthless and unreliable or society as a whole. So again good for you an happy you got something i don't... Understanding and people who care about you in general.
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. 🐺
This video is EVERYTHING 💜🦋It describes our struggles so well🥺
This vide explains my everyday life and helps me to understand myself better , I really appreciate your efforts in making this video
Excellent presentation that is very truthful 💜🦋💜🦋
I was diagnosed with LES 8 years ago... I feel good some times, but some others I feel very tired, cannot concentrate and not enjoy things in life... 😢
We are same, I feel so depress .I dont feel happy .8years now i never be happy
this video really help me especially about (how I have to react to someone who has lupus disease)
Well I hit the jackpot.... Not only do I have ADHD, I have lupus too..
@Marian Cook like I'm going to email some random scammer..there is no cure, so cut it with the b's.
I have this rare disease... it was too hard to recognize.. I was suffering without knowing this disease for many years... if you realize any symptoms of this,pls go to a rheumatologist... otherwise you will pay for this
It's not rare at all.
@@friendlyzombie1460 rare for a male
@@HumanBeing... It's not rare in men. More women get it but it's not a rare disease. It feels like it since literally not even .00001% of research goes into lupus. We still have the same crappy drugs that were accidentally found.
Nice video .l have lupus also.so l can explain my problems now.
Jay Pal join
Very informative for those who are not swear,thank for the upload!!!
It all makes sense what I was experiencing now all the time o felt no energy and things like that it was lupus all along. Lupus has been with me for years
i would love to show this to my friends...some people are compassionate but dont really understand or try to learn about what i go through
Great Video! Exactly how I feel!
thank you very much now i know why my mum is tired
Bra info om att leva med SLE
What's weird for me is I took the blood test 3 times came back positive but I don't have symptoms
Well said I Have SLE
I’m tired of livin with this and prey for my rest.being cut off of my oxy forced me to go black market brown
They show make more video.. very informative. .
I'm glad to hear that you like the video. We do have some other videos which may be of interest to you;
What is Lupus? - ruclips.net/video/Txx2jZyJWYw/видео.html
Living with Lupus - ruclips.net/video/_B6c6k3Ktqk/видео.html
Join The Fight Against Lupus - ruclips.net/video/CDyGSoGZ01o/видео.html
Can you open CC this video too? I want to add Korean subtitles :)
Hi Mia. I have now opened CC on this video for you. Thank you so much.
I was diagnosed with this shit show the beginning of 2020. My occupation as a tire technician really doesn't help a healthy person as far as damage to the body but changing tires on the side of the highway or in a farmers field or a city odot garage and having lupus. Well to sum it all up its a steel hauling train wreck waiting to cause havoc. Not currently taking treatments. Not really much of a fan of doctors and pills now with the bs going on with Rona and vaccines and hojjy bobba bull dank I just wake up everyday the best I can and go at it the best of my abilities. Iv worked hard to get where I'm at in life. And I'm not gonna let something even as complex as lupus slow or shut me down. It sucks it really does and some days I can't get up. But I rest and I try again or I fight through it all and go at it. Lupus can suck all our asses
Hi team I shared this on my channel for Urdu speaking community . Is that okay?
That is great, thank you for sharing it.
💜
Boy is that a wolf 😮
Lupus means Wolf in Latin!
It’s never lupus
Until it is lupus
Very informative for those who are not swear,thank for the upload!!!