Why Do A lot of People not Know About Lupus Until It's to Late?

[More-Knowledge-Rules]

after I had learned I had lupus I started talking about it to people and it turns out not many people know about it. So I been thinking why don't people talk about it? I know that I more people had known about lupus i would not have been in the hospital cause my kidneys we failing. now a days things like cancer diabetes strep throat and the flu are all known so why not educate more people about the diseases we don't know yet? There are lots of things people can get that we don't know about disease and illnesses that have been pushed into the dark and no one knows about them until either them or someone they know has it I know not knowing can help people but not knowing things can also kill people to. Every time I get the chance I try to tell people about this cause you never know when this or another disease or illness will happen to you or someone you know.

[stiff19]

Docs need educating, 🙏

[Insomniacette]

I do tell my friends and family but I think for many of them it was too abstract for them to understand... I look well so if my body is attacking itself it's probably minor. Or some react a bit like they think it's a made up condition for people who have aches and pains and complain a lot. Selena Gomez helped a lot with raising my friends' awareness - when she had her kidney transplant a few of my chums contacted me and were like "whoah it's actually potentially serious sorry I didn't realise".

Covid has also bizarrely helped a bit with the unintentional dismissiveness. More of my friends and rellies understand now what an autoimmune reaction can do to a person as they have all understood that the dangerous part of covid is the autoimmune reaction that happens to some people on day 5 to 10 and devastates their lungs and/or organs.

So I've noticed a lot more of my friends and family have recently come to understand that this is no small thing I'm battling with and that I live with the fear that my body could turn on me.

Equally I don't talk about it much at work, largely because I find it to be a personal matter. My boss knows I have it just because I felt it was important she did in case I ever needed to take a sick day but otherwise I don't advertise it. I suspect it's also because I don't want to be treated differently to anyone else in the workplace so I worry if I bang on about it that it might end up happening. No one else in my work tells me their medical conditions so I feel a bit uncomfortable telling anyone mine.

Not sure if any of these thoughts are helpful but there you have it!

[More-Knowledge-Rules in reply to Insomniacette]

i totally understand what you are saying and i understand that you don't want to be treated differently when my friends learned after my family everyone started treating me like i was some china doll that could break at any minute and I know what you mean about how talking abut it to other people who don't tell you their medical problems would be embarrassing cause for me I have learned the hard way that one little different thing about you can change how everyone acts and treats you its the way that society has placed people that's causes this issue people when they see a bad thing they will tend to block it out and ignore it so us as people have been trained to be afraid of all the bad things when in reality we all need to face the dark parts rather then turning away and pretending. a lot of people will argue about this but when you truly look at it its true when u hear someone say this person has cancer you say I'm so sorry but within a bit you forget and move on cause it does not deal with you as harsh of a reality as it seems everyone thinks the world right now is bad but that's only because we focus on big issues and don't care about what's hidden after them. everyone is walking in one way or another their own little dream land and if people really want things to get better we all need to wake up and pay attention to all the issues cause yea a big problem like a war is a big deal but if u have a disease and all u focus on is the war the real winner will be the disease cause no one realized it until it became a big problem. So what im trying to say is yea cancer diabetes the flu and all that are problems but when you look at all the hidden illnesses and diseases the cause a bigger issue then just the small amount we are dealing with and yea i know that we as human beings cant go focusing on every little thing but we need to start showing everything that is happening rather then hiding it and letting people learn the hard way through getting sick not being able to get diagnosed cause doctors don't all know every disease cause they don't all go back to med school and in worse case scenario that person dieing when if the person had already known about the disease or illness instead of freaking out they would have some understanding of what could be happening and lessening the amount of damage that is done and even possibly saving their own lives. And there is a difference between advertising your issue and telling people the info that they should know so that they are prepared in case it happens to them or someone they know and it actually does help when the person telling you actually deals with the issue itself it brings more in depth information and will connect to people so they realize this is not some joke this a serious thing.

all of this is said with full respect to your opinion.

[CecilyParsley]

I do understand what you are saying. Until I had a diagnosis I had not heard of it then when I looked on Facebook so many groups of people all over the world. I think, having witnessed how people react to it, I can understand why people do not talk about it to those who do not have it. I have had friends believe it was in my head and even the year before last a Rheumatologist told me I only had Fibro and “ hysteria”. I have been diagnosed, undiagnosed, had my diagnosis reinstated then changed in the eleven years since my original diagnosis. If the medical profession struggle with it, it is no wonder the general public are clueless. Three years ago I posted an image of my legs on Facebook. The reaction was one of horror and compassion because it was tangible. People are far more likely to accept and understand what they can see. I wish it was not the case but that is just my experience. Xx

[More-Knowledge-Rules]

i honestly hate how ppl would rather have someone be crazy instead of actually take the time and realize that your not lying you are telling them something true it sucks that ppl would rather say your crazy then understand there are worse things out there i know when i was diagnosed i said i would rather have cancer then lupus cause then i at least have a chance of getting rid of it.