HELP!! I am at the end of my rope! I have had SLE for over 4 years now! I live in the USA. I have lost so many friends and family members.

[krisdy]

Because I act different! I dont know HOW to act my brain does not work the same. And right now because of a bad flare up I am on high doses of steroids. and that makes me crazy!! I am so so sick and of this illness there is no awareness so I feel like everyone looks and me like a FREAK!!

[purple-lou]

You aren't alone.

I feel the same as you do at the moment.

Even family members have distanced themselves from me.

It hurts, but embrace the people who are there for you.

We know how we feel, but when we put it into words, it doesn't sound so drastic.

This site is a huge help. Everyone on here knows how you feel.

Lots of hugs,

louise xx

[krisdy in reply to purple-lou]

Thank you, But the only thing is my husband who has been my main and always support is seeming to back away! Its just so many people! And why?? If I had breast cancer this would not be happening! I dont understand why there is not more awareness!! thanks again! love, Krisdy

[caz59]

Hi Krisdy it is difficult for our loved ones sometimes. I was diagnosed with SLE 31 years ago just after i had our son. It has been hard at times through the years for me and for my family. No one can understand what we Lupies can go through unless they see it 24/7. I used to think my hubbie was distancing himself from me but then i realised what alot i was asking of him and how awful it must be to see someone you love in so much pain and suffering all the time. Many years ago we talked about this and he explained the fear of losing me and the stress he was under was enormous, what with working long hours away from home to keep a roof over our heads. It was difficult for me to as we both didn't have relatives near us and i had a new baby to look after. We decided that we both needed me time, so if i am well enough i will go into town and window shop and have a coffee or take the laptop to the bedroom and have a nice quiet evening or read, likewise for hubby. As for other people i have learnt not to tell them about my illness it is easier and most people dont understand, according to them i look so well pft! what do they know. I hope this has helped you Krisdy a little bit of insight into how people might cope. Sending gentle hugs. Take care.

Caz59 x

[purple-lou]

I agree with caz.

I thought my partner was very distant and got so worried.

When we talked about it, he was so upset. He was angry with my illness and felt bad because he couldn't make me better.

It is a huge change for them too. My children are really struggling to cope too.

Communication is the key, I think.

Hugs, louise xx

[helentad]

Hi go to the website. But you don't look sick.com Go to the spoon theory. Print a page off and keep it with you underling the website address or making sure people you show know the name of the site. Explain how Lupus and some other illnesses can give you a warm glow to the face and can make you look healthy when actually you are feeling awful on the inside. Explain that that it is actually the worse thing they can say to a sufferer. Did you know that somebody has found out that many lupus people have few rinkles and look younger than the actual age. This is one of the foybals of lupus

I am the same we have lost many friends and I my career. Our lives have been turned upside down. But those that have staid close we keep close.

Good luck to you and god bless. Helen

[lemonface]

Hi Krisdy

When you get to the end of your rope tie a BIG KNOT AND HANG ON TIGHT girl

I was dxd with sle at 32 I was on drugs for 6 yrs. where i was a zombie so i took myself in hand changed my diet and lifestyle and managed to come off all medication where i stayed off for 14 yrs. Last yr Oct 2011 i was dxd with another auto immune Lamber Eaton Myasthenic syndrome. Hospitalized for 6 wks, 2 monthe physio i lost 1 1/2 stone NG tube for 2 monthe i couldnt swallow. But with alot of hard work i got myself back to health and fitness and last saturday Oct 27th i completed my `13th marathon So dont give up hope my friend it takes time to get to grips with disease but it can be done. In fact i hav just written a book about how i did it and am now going to try to get it published to help others Wich me luck