If no one believes in it but you, your pain is (presumed to be) madness or hysteria." by Naomi Wolf, The Beauty Myth.
Believe in yourselves fellow lupies, you're not alone, you have this site and therefore each other. Your pain IS real. Sending out warm hugs, strength and well wishes to you all. <3<3<3
Thanks Guildford. Much needed today. Bed bound with pains in hands wrists and legs along with nausea when all i want to do is enjoy the good weather xx
Ahh, sorry to hear that, there'll be other sunny days, just take care. Xx
My sentiments exactly! I used to think it was all in my head, until I started keeping other people awake at night by screaming in agony with severe pain in my hips! NOW I'm taken seriously!
Would nice to be heard without needing to scream though wouldn't it? Hope you've got the pain under control. All the best xx
ive always tried to battle on and my hubby (and family) thought i was ok and coping well with my daily pain until one evening i curled up in bed and sobbed and sobbed and said, " this isnt living,its exsisting,i just wana close my eyes and never wake up"
my hubby was shocked and cried with me (he wont thank me for telling you that) then he believed how lupus is hurting me x
Aah bless you, hun. I think many of us have been through it and continue to go thro it, some days are better than others. I find I'm more emotional when the pain has lessened funnily enough or when I have space/time to think. The crying only made my husband and everyone else think I was depressed and just needed to pull myself together so it's good your husband showed his emotions. It's ok to cry and to ask for help tho. I believe in your pain. Xxxx
I have lived with pain for 15 years as my S.L.E. won't go to sleep, and I don't think many people believe me any more. Even my Consultants and GP just blame everything on S.L.E., I would just like one day pain free so I could remember what it is like. My shoulders, hips, knees,neck and jaw, always one of them. oh to be pain free.
So sorry to hear that. I empathise along with so many others, I'm sure. Tens helps me when I want to distract from the pain. I set it on the sort of acupuncture setting, creating new pain that's easier to cope with than the intense ache. Can't find any med that helps - hate taking tablets anyway. Xxxx
Thanks Guildford. I can cope with the pain, its people close to you don't understand and sometimes don't believe you. xx
I know, the emotions you feel when not believed sometimes hurt more than the pain itself. Xxx
thats SO true guilford xx
Hi, I did reply to your other comment above, I hope you saw it. Xx
If my sister tells me once more to go swimming with her becaus in her mind that's what will fix everything I'll scream. I can't even get myself into a bath have to stand under the shower and only for a very large back scrub I swear they would be parts of me left unwashed. As for my hair all I can say is thank God for hairdressers.
Lol, ahh bless her, she just wants to help I'm sure. A bit of fresh air will do you good, you should get out and walk more, you've given up, why don't you blah blah blah blah. Have you had your family talk across you like you're not even there highlighting that your childrens lack of discipline re doing chores etc is all your fault "I blame my daughter, I know its her fault" that was from my mum who is my strongest ally would you believe. I don't get applauded for what I do just criticised for what I don't They'll never fully understand. I get angry, I cry when I'm alone but most of the time I try to laugh. Exercise is supposed to do wonders you know, ha ha ha xxxx
I often reminisce about the days when i was full of energy, youth and pain free, oh how i wish i could be that person again, i pass joggers, walkers on the road and i feel so robbed of my youth because of this horrible life changing lupus. I feel like an old granny (im 35) best i can hope for is to make it through the day without needing a couple of naps! oh how i resent this disease.
You speak for most of us. My mum at 76 is more active and capable than me, she's got a darn sight better social life too, lol. Xxx
It is a very lonely illness. Without this site I would be uttterly lost. I am not sure to what extent people believe me and friends often brush it off so have stopped mentioning it to them. My partner is nice but just buries his head in the sand. Xxx
Yes, hun. I feel for you. I think men esp. don't cope well and at times you end up nursing them for your illness but that's because it affects everyone in your life. Communication is the key, we have to learn to tell people what we want or need from them as they can feel at a loss to help. Lupus was the last straw in my marriage so I'm no expert, lol. But always remember you're not alone and use the site to express yourself. All the best xxx
It is true that communication is the key but when I do tell him how I feel I can see the helpless look in his eyes and I know it hurts him to know the pain I am in. He has told me many a time how he wishes he could take it from me, and that he would rathe it was him than me. But that isn't going to happen and all I want is someone to be able to talk to about it and be able to break down and be hugged when I feel low but I end up doing it alone so as not to make him feel bad about not being able to do anything!! 
xxxx
An Everything But The Girl song lyric:
"Don't tell me to stop crying, please just hold me while I do.
Soothe me with your silence and just craddle me to you.
Don't ask me for a reason or expect me to explain,
How can I in 5 mins tell a lifetime full of pain."
Find the words through songs, books or write him a letter, so he can read it again and again and gather his thoughts before replying - it's also very cathartic to unload your feelings in a letter instead of carrying them around with you. He needs a break from your illness too so I hope you both get some time a part, you to do girly stuff and him to do his manly thing, lol. He sounds like a good man. Xxx
Wow, amazing how lyrics can match with what you want to say! Yeh think your right, writing a letter is usually a good way to say what needs to be said. I am not very good at talking about my feelings so tends to end up in a letter anyway. That way I can get everything down without being interupted and of course with a terrible memory means I can take my time writing it! We do have our own space, him with his friends and me with mind and this certainly helps. Thanks for the advice xxx
My pain is a very nasty ghost that only I can see and feel.we all have nasty ghosts on this site x
Ooooo that gives me the creeps but I can understand the metaphor though. I don't feel the same way. My pain just is and it's a part of me, love me, pain and all, haven't got any warts yet, lol. Take care xxx
Shame you have to pay to get answers!
Pain when my skin is touched 
Can you get diagnosed with sle then again to be not diagnosed l am very dissapionted in the rheumy doctor
In the Cotswolds glamping with my trio. Gosh I can’t believe how tired I get from driving 🙁My foot aid. Cannot believe how common this foot pain is. I was starting to believe it’s because I’m obese until this recent flare. 
