View Full Version : Diagnosis question

03-02-2010, 12:09 PM
Hi all,

I was just wondering how you felt when you were first diagnosed with lupus. This is to do with my project but I am interested in other people's experience as well. It makes me feel like I'm not alone.

Thank you,

Harriet xxx

03-02-2010, 02:04 PM
Sort of vindicated...then scared. I had been symptomatic for a very long time before my test came back positive, but when it did..although I felt like...wow,finally an answer. It went to holy crap. Now my daughter has been diagnosed as well, so it's double holy crap!!!

03-02-2010, 02:27 PM
Honestly, at first, I felt relieved. I finally had an answer, and thus, an enemy I could now fight. Then, I felt fear, and shock that I was one of the 10% or so of men with SLE. There was alot of angry "why me's" and sleepless nights wondering what my formerly clear, well planned future now held in store for me. There was despair, loneliness, just about every bad emotion you can experience.


PS-As a side note, I was also diagnosed with MS about 1.5 years ago. It was also a shock, and scary, but overall it was not the devastating blow I thought it would be, even though many people consider MS to be a disease worse than Lupus. The original SLE diagnosis has had the positive effect of allowing me to deal with bad news and stressful situations in a more calm, rational state of mind, and living with two autoimmune disorders isn't much more difficult than living with one.

03-02-2010, 02:53 PM
i felt a sense of relief after fighting so long for someone to believe it was not in my head i was glad to have a name for my illness then the fear of the unknown set in and i was extremely scared and overwhelmed until i joined my friends at this site it helped me deal with my situation and know i was not alone now it is just 1 day at a time. hope this helps kim l

03-02-2010, 10:37 PM
It was an AHA moment. Suddenly, all the aggravating little symptoms that I've had for so long made perfect sense. I also understood what my mother and my aunt had dealt with, as well as others in the family. They were never correctly diagnosed, but my mother and my aunt had many of the same symptoms that I'm having. It also made sense that my uncle had Parkinson's and his daughter had MS - all AI issues.
My next emotion was worry that I might have passed this on to the next generation, since I have five grown children and now three grandchildren.
Getting all of this stuff figured out has been like putting together a very large and very frustrating jigsaw puzzle.

03-03-2010, 05:08 AM
Same here! At first there was vindication after years of being sick with no answers. Then I was UN-diagnosed (frustration, depression, hopeless) - then RE-diagnosed(unbelief, fear of getting comfortable w Dx, denial) then - again - relief. Then - fear of the meds, prognosis, still some denial left. NOW - acceptance.
So sad that so far each person that has responded had feelings of RELIEF first....shows the enormous difficulty in getting diagnosed!! Good luck with your project!

03-03-2010, 01:47 PM
I was devastated and thought it was a death sentence. I went into denial for a long time. I realized later that it wasn't a death sentence and eventually I got used to the idea that I had lupus.

03-03-2010, 03:52 PM
I just wanted someone to tell me this was not all IN MY HEAD. Bonita

03-03-2010, 07:15 PM
I just wanted someone to tell me this was not all IN MY HEAD. Bonita

Hey Bonita, it's not all in your head! (it's still good to hear that from time to time)

03-03-2010, 07:57 PM
i had tested positive for lupus for over 10 years, but did not have enough symptoms to complete the diagnosis criteria, so i learned to live with fibromyalgia. Then, when the lupus symptoms were so extreme, the lupus diagnosis was given, and i left the drs. office feeling terribly alone and terrified of the future. I knew the diagnosis was eminent, but the words were a blow. My kids were devastated because they were not prepared, so we all went through some very difficult times of education, adaptation, and acceptance. I looked into alternative living arrangements - maybe a condo with consiere service....i even feared assisted living. But, i have learned how to live with lupus, i am in my own home, i enjoy the good days, and accept the bad ones.

the benefit of this whole process is my new attitude....i have learned to stand up for me.

03-04-2010, 08:26 AM

I just want to say that you always have such a positive and encouraging outlook on things. Its always nice to read and it inspires me as well..thank you :)....Of course, you are one of many here and it makes me wonder, "Why do all the nice people get lupus?" LOL
Thankyou again