Hi there, my name is Nuria and I have Lupus
I could have chosen a thousand different ways to start this blog, but I wanted it to be this way. Let me tell you why.
I was diagnosed with Lupus at the age of 15, but it didn’t really upset me as I was told it all would go away when I turned 21… As silly as it sounds, I believed such nonsense and didn’t bother looking up to check what Lupus really was and the impact it would have in my life. My only symptoms where the butterfly rash and a little hair loss, so why bother? And so I decided to stay into the shade of the utter ignorance, where I was happy with a normal life.
My mum told me to not tell anyone about my Lupus and say instead that it was an allergy to the sun. Didn’t really understand why, but I did as I was told…
The place where I grew up is a small city in the South of Spain called Granada. And in tiny places news spread all over really quick. People start talking rubbish and I guess my mom only wanted to protect me. Either that or, why lie, she only wanted people to think she had the perfect family.
I don’t really blame her, even though now I start to realize that that behaviour really had a very negative impact on me, my relationships and my health.
Anyway. Years passed by, I turned 21 and, of course, Lupus was still there (oh, surprise! :p). Obviously I wish it had been different, but I still had a normal life, so it was ok.
I am now a 32-year-old woman who would love to get pregnant, but I can’t because I am not ok at all. I cannot work; I cannot do much (cannot even go to the store some days!) and have been into hospital more times that I can remember. Also, you know, I am up to my eyes in drugs! So that’s a big NO NO to have a baby…
I have been, and probably still am, in the very deep of the depression hole. I think it’s only fair that I say that if I didn’t jump out of the window it is because of my cat. She has saved me so many times and is there whenever I need support or feel down. She is the only one that can sense those little things that I try so hard to hide from the people around me. There’s no scape from my cat! 🙂
This stupid flare showed up like 6 years ago and it has had its uphills and downhills, but has always been there. Bye bye normal life!
Never told anyone about my condition, nor my pain, worries and fear or my day-to-day struggle in the “normal” life that I intended so hard to show I had.
Nope, never asked for help. Not even my partner, who has been there all the time dying for me to share my fears, worries and pain with him. But instead of that I have behaved like a complete and selfish bitch. Great thing to do, I know I know… Always thought:
– If I act like if Lupus is not there, it will all go away eventually- that positive thinking kinda rubbish, yeh- didn’t work…
– People don’t like seeing sad people. And sad people don’t get anywhere- if you go out, just keep the sadness to yourself and don’t you ever dare talk about what worries you. If you are limping because of the pain, suck it up and walk like if nothing happens!
I could carry on with a whole bunch of the silly things that has got me in the hole where I am now, but I don’t see the point at the moment. Plus I feel so stupid when I think about it that I feel quite ashamed of myself.
As a result, this lupie remained hidden in her cave… Save, thinking she would get out of that rough patch because she was strong enough.
Silly me, after 17 years with Lupus and 6 years of flare up it is now when I realize that I will never be able to do it on my own.
And that is why today I decide to stop hiding. That is why I start this blog saying I am Nuria and I am a lupie.
As for my little cave, of course I am keeping it. Not to hide anymore but so that it can be a place to share and be with whoever feels like being with me and getting to see what this crazy (stupid) mind hides.
Also… Well, I am pretty scared because of doing all this and opening up after so many years, so I have to admit that I am keeping my cave in case I need to hide again (sorry, but the fear of rejection is stronger than me!)
Excuse me for the poor writing. I used to write a lot when I was younger and now it seems I have to get to grips with it again. Plus this is the most difficult thing I have ever done in my life!
I only hope I am strong enough to not back up and that you are there to see this lupie get out of her cave more often!