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This service is currently suspended due to SLE

I am glad to have found a secure space where I can vent off about my life with SLE without fear of prejudice or judgement. Perhaps they are same thing, but anyway. As much as I remain determined that SLE should not completely absorb me, I have to say, that constantly swimming against the tide can get tiresome to say the least. Of course, I am not alone in this. When the world whizzes along at a greater pace than you, then what do you do? Like other sufferesr, I have learned, (usually the hard way) an awful lot about myself, the world and how it reates to me as with someone with SLE. I was diagnosed in 1994 and am still learning.

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Yes,you are made to feel as though you are in the minority,especially as Lupus is quite a coplex(afflication/desease) illness to deal with.Advice is all well and good but,are the advisors living with Lupus.I wish you well with your learning.


I had a deep sense of knowing that something wasn't quite right for virtually all my life. I notched up quite a reputation for epic sleeps and "strange" nocturnal habits way before chronic joint pain came along, but my nearest and dearest put this down to just another of my excentricities..

Despite this knowing, I found the period around diagnosis of SLE extremely traumatic. My identity faded, friends and family were totally mistified, we'd never heard of Lupus and as you say, the medical side may have been clear enough, but emotionally, I was all at sea. I am sure the subject of, "getting to grips with diagnosis" must come up frequently here.

Thank you for your well wishes and all the best to you too.


Yes Lupus is a very lonely illness to have ,and the road is long and hard,

I think all us Lupus suffers feel that way,

That's why this site is so important, because you now know you are not alone

keep well and safe

LOve & Sunshine


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