Why do so many people suffer from Systemic Lupus yet doctors / insurance companies dont consider it serious?

Question

I was diagnosed with SLE Systemic Lupus at age 18, I am 23 now, but it is a constant struggle for me to deal with this disease. I am constantly humiliated by people, and doctors, and I have to constantly proove to them that I am sick, and that I have a real problem. Lupus has taken my abilities from me, at times it is so painful that I wish I were dead. This is serious and it is my reality, yet doctors act like its a walk in the park. Why is cancer or lukiemia (cousin to Lupus) or other blood disorders taken so seriously, and Lupus is treated like its no big deal? I am sick of being treated like a second rate person, humiliated, discriminated against, due to societies ignorance on my painful life altering disease. Lupus is real it hurts, it changes lives, I think it is everyones responsibility to know what it is. It is amazing that if u ask any random person what Lupus is, they dont quite know, but they know someone who has it. Come on people look it up on the net. Inform yourself!

Answer 1

i feel the same way!..i have chronic fatigue immune syndrome, and fibromyalgia..."but you look great!"...duh!..i spent 6 years in bed, life still isn't much better with exhaustion and pain 24/7(on morphine, sleeping pills, hormones,etc)...
I think some people are trying to help, or be kind, but don't know what to say..some are judgmental, if you don't look sick(jaundiced, emaciated or bleeding!) then your great, everybody is tired and stressed,etc.
The only one's who really know how you are, are the homemakers, dr.'s or family/friends(if there's any left!)..that see you day to day, and KNOW how you are...even then, unless you have the same illness, or have truly experienced suffering, it is hard for the naive or the ignorant, to be compassionate, or feel anything...it isn't within there capacity..when it comes to dr's, yes you would think they would care more..but again, they too are human, and even armed with the facts, are judgmental...you know..and you know who you can call when you need affirmation after being minimized, or devalued..it's a hard, harsh reality, and very unfortunate for both of us, and all the other disabled people, that people just aren't educated, and don't know how to help or respond...i am so sorry...it hurt's less after 16 years of dealing with it, but it depends on who it is coming from..yesterday it was a neurologist... creep!
pinkrainbow

Answer 2

Well, there's good and bad news here. When I was diagnosed with SLE 30+ years ago, my doc told me I could be dead in a couple of weeks. Now, most doctors and insurance companies consider Lupus a chronic illness rather than a terminal one. That does not, however, make it an easy disease to live with. Sounds like you need a good rheumatologist who can really manage your flares and get them under control. Ask about taking Plaquenil, an anti-Malarial drug that has done wonders for me. Sure beats Prednisone, which makes you psychotic and eats away at your muscles and bones. Also, my rheumatologist told me that SLE does tend to get better over time, as you get older. It's true for me. I was REALLY sick (kidney involvement) when I was diagnosed at 19. I had flares on and off for about ten years, and now my SLE is in remission, pretty much. Hang in there, kid, and demand good treatment for what ails you!

Answer 3

Well it seems you want the world to understand you and they don't. I know lupus is a serious disease and a big problem for your life. You should try to educate people to change the world. There are not any good known treatments, so medical people feel pretty helpless. There is a lot of ignorance. So go to work educating people. And in the meantime forgive them for their ignorance and don't let the world's problems add to your stress.
And take yoga. That is the best treatment.

Answer 4

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