This service is currently suspended due to SLE - LUPUS UK

LUPUS UK

32,212 members28,556 posts

This service is currently suspended due to SLE

3 Replies

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.

3 Replies
Binkey profile image
Binkey

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.

janiceray profile image
janiceray

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

Not what you're looking for?

You may also like...

Is the shingles vaccine suitable for people diagnosed with sle

I have a case of shingle and was wondering if anyone has any first hand experience if the shingles...
Hopey profile image

Is it possible to be diagnosed with SLE and chronic fatigue syndrom (CFS)?

How does one distinguish between fatigue associated with SLE and SLE and chronic fatigue syndrom?...
Tripitaka profile image

Can you get diagnosed with sle then again to be not diagnosed l am very dissapionted in the rheumy doctor

hi guys not been on for a few days, I went for my hospital app today it got brought forward due the...
kgreig profile image

if my diagnosis & treatment for SLE took years to arrive, is the prior progression of my condition at all reversible?

I'm following on sort of sideways from a ? Uzi41 just asked in the forum blogs section about having...
EOLHPC profile image

What is my partners role in this situation

Hi, I have recently been diagnosed with sle, my partner and i are finding it both strange and...
Tiggers1 profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.