Advised not to Research Lupus

I was just wondering if anyone else was advised not to research lupus because family or counselors thought you would diagnose your own symptons???

Yes I was advised against researching by my family.. they thought the more I researched the more depressed I would become.. But I had to know what I was going to be facing and what the treatments were. My doctors never told me not to and I tell them all the time what I've found and they never have anything negative to say about it.

Me!! my whole family says im a hypercondriac and that i want lupus..how unreal is that? I would never want ANY DISEASE!!

Actually there is some wisdom to not researching as without the sophisticated knowledge of a physician you can have a tendency to misinterpret the significance of your symptoms. Although it is important to be well informed it is also very easy to fall into the trap of diagnosing yourself

No one ever told me not, but wile I was researching I had several panic attacs because I read all this horrible stuff. I started to think I would have all of that happen to me…

It scares me too so I just stopped reading and googling things…

sunshinespraypaint said:

No one ever told me not, but wile I was researching I had several panic attacs because I read all this horrible stuff. I started to think I would have all of that happen to me…

I believe that it is important to know your disorder!!! And to know your body. But instread of reading all the things that can happen, why don’t u read up on diet and nutrition, and on things to avoid. How to help yourself get better. Keep a log of things! Read about new drugs! Just inform yourself about lupus and not just what it does, but what u can so to fight your lupus!

godsgirl said:

It scares me too so I just stopped reading and googling things…

sunshinespraypaint said:
No one ever told me not, but wile I was researching I had several panic attacs because I read all this horrible stuff. I started to think I would have all of that happen to me…

My doctor only gave me trusted websites to visit to learn about lupus. She didn't want a hysterical patient on her hands! At this point, I've visited many sites and have read some horror tales. It's frightening, but feel it important to know this isn't something to be taken lightly.

U hit the nail on the head! It is important to know what u are up against.

Kadeeeee said:

My doctor only gave me trusted websites to visit to learn about lupus. She didn’t want a hysterical patient on her hands! At this point, I’ve visited many sites and have read some horror tales. It’s frightening, but feel it important to know this isn’t something to be taken lightly.

I feel its important to know also. I was so surprised when I was diagnosed - but I didn't know I had anything this serious. I am the type of person to shrug it off, and I can handle a great deal of pain on a daily basis. I've learned that dizziness, and the foot pain is all from the lupus.

Hi sunrisetrisha,

I was given a Lupus site to join by the hospital sister and when i viewed it totally boring looking so that was a no go...THEN i was offered councilling because of everying i have...yes it gets me down at times but i don't need councilling.

I think studying up on proper medical sites of issues you've been diagnosed with is the best possible way of advancing your knowledge to Lupus as you definitely won't get that from the hospital's they cut corners on info to keep you in the dark more....plus family can be against it incase you just start discussing what your suffering, as the saying goes "Ignorance is bliss"...which we can't afford to be.

I'm getting ready for my first visit with the rheumatologist and I have been reading a lot. Some of the members here pointed me in the direction of reputable sites on lupus. In fact, I printed off some of the issues and highlighted questions I want to ask the doctor in the context of which it was written. Being a former teacher, I have to be informed. Yes, obviously we must read and realize not everything will happen to us. Each day I am thankful though having lupus, I have today.. My appreciation for the small things bring joy. - a cool breeze, green grass, blue skies, birds, singing, etc. And I'm learning to be content at each "stage" of the disease.. Yes, Carmen's passing reminds me ofmy mortality, so I am living today with God's strength...and continuing to learn what I need to know to improve the quality that I have left. God bless.

Hello Faye,

Such a lovely comment and out look to pass onto anyone....plus i hope your appointment goes well i'll be intouch later because of time difference to see how things went.

Love to you as always Terri xxx

Dear Ann A,

Thanks again for the great resources which you have made available to us who are new. I find them extremely helpful and you definitely wrote words of wisdom. I am constantly holding out for hope that we may be the generation that finds the "answers" we so desperately want and need! Thank you! Faye

Ann

Thank you for this information! This was very helpful and answered alot of questions that I had. I bookmarked the site so I can go back and read this again. This site notes that patients who are well -informed better manage their disease.



Ann A. said:

I am by nature and profession a researcher. If anyone ever told me not to do it, their "suggestion" fell on deaf ears. In order to deal with lupus it is necessary to understand what is known about it. One of the best sources of information is the National Library of Medicine.

http://www.nlm.nih.gov/

There are great tutorials for the newly diagnosed and their families (which help to explain why sticking heads in the sand is not a good approach to lupus).

http://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htm

If you can read research literature then it is all available through Pubmed

http://www.ncbi.nlm.nih.gov/pubmed/

As far as I am concerned, the quicker you learn, the longer you live. But you have to really learn and not just skim the surface. On the surface there are plenty of things that will lead to worry or anxiety (http://dictionary.reference.com/browse/anxiety). You must use every study skill you have and develop the study skills that you don't have.

Learn and live. Learn more and live better. Faye is definitely right about knowledge increasing the quality of life.