when you hope it's Lupus... | Lupus Forums at The Lupus Site
  1. As you can see we have transferred to new forum software which is much more stable and will eliminate problems that we had with the old software.
    *** To login you will all need to reset your passwords. To do this simply click login (top right) then click the forgot password link. You will receive an email with a link to reset your password. You can then use the forums as normal.
    Dismiss Notice

when you hope it's Lupus...

Discussion in 'Chit Chat' started by Amanda F., May 21, 2016.

  1. Amanda F.

    Amanda F. Member

    Has anyone else dealt with this before getting diagnosed? I have had so much anxiety and fear of dying from this...whatever it is...that I actually find myself hoping for a Lupus diagnosis. And wow...that's a huge 180 from how I felt just 5 days ago.

    When it first dawned on me that I may have Lupus, I cried for hours. Thinking about my kids (they're young). Thinking, if my symptoms continue to progress as they have and all of my "tests" continue to be normal as they have, I will never get diagnosed and "they're just going to let me decline". These moments don't consume me. I am able to snap out of it and go to work. But, they do get to me for just a little bit every day.

    And it occurred to me, how sad. I mean, it's come to this? To the point of hoping for a disease like Lupus? Really? 20 years ago, I was in complete denial about the headaches that I suspected were more than just "normal headaches". Then, when I was 33 and got a diagnosis of Chiari Malformation, I was relieved it wasn't something worse (even though this condition is known to severely debilitate some over time). Here I am now, with symptoms much worse than they were then and I find myself hoping it's Lupus.

    So is that how this roller coaster goes? The worse we get, the more we're willing to settle? This makes me angry. Really, it does. THAT's how something like this takes your life from you. It takes your hope away.

    I am grateful that I'm still able to hide it. But I am falling apart. I know if someone can't figure it out, I will become disabled, lose my job, lose the house. And that's what scares me. I'm tough. I can take a lot. But we all have a limit. And I have no way of knowing if I'll hit mine before getting a diagnosis. Or IF I'll get a diagnosis. And if I do get a diagnosis, maybe it'll be something far worse than Lupus. Or, if it is Lupus, whether the meds will help.

  2. x_claire_x

    x_claire_x Moderator

    It truly is a rollercoaster ride and yes that is how it rolls.. you will flit through all of the emotions.... I think the hoping it is Lupus may be partly because you want some answers...and if they tell you Lupus you can move forward and get on with it !..... Nobody wants any chronic disease, of course, but there are many worse ones out there. You probably feel more familiar with Lupus now having done a lot of research on it.

    Let us hope you get some definitive answers soon......Claire
  3. lazylegs

    lazylegs Moderator

    Amanda does your doctor know you feel this way? Sometimes it take the doctor seeing it from your eyes to wake them up so they notice your complaints aren't just the run of the mill.

    Take care,

Share This Page