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just wondering if anyone else finds it difficult with family members.. I am extremely sun sensitive. went on holiday not well at all only went wales rained all week. Just feels like I only one knows what its like. husband nearly lost his job on a warning now. Thinking he's slightly depressed over work.

he hasn't got a clue thinks its me.. If he knew he'd be extremely upset makes me so angry? cant do anything normal anymore... all he's doing blaming me.. just wish I had something normal what people could understand like. cancer. not right thing to say really people know your very seriously poorly and look after you then?.

9 Replies

Hi Tracy

I think this is a difficulty many people face ( I think I am really fortunate with my husband.) I know there are leaflets that Lupus Uk produce to explain the difficulties to relatives

Try this site :

it has some really good information.

All the best


My husband suffers with depression and I often try and play down my health issues to save him some of the pressure that comes with having a loved one with Lupus. But being the kind sensitive man he is, he always catches me out and feels guilty because I've tried to protect him from it.


I totally understand how you are feeling as ive had lupus and fm for years, my hubby understands to an extent but then says " you cant possibly feel poorly EVERYDAY!"

my children say the same and I often get left out of days out now. it didn't upset me at first but I realise they don't want to avoid the sun or walk at a slower pace just because of me.

hugs x


Tracyxx: I've had 2 relationships. One was a marriage that lasted 13 years and the other common-law (engagement ring) which lasted 7 years. Twice, it was suggested that the men familiarize themselves with the disease by attending Lupus Support groups. Twice the men determined it was in their best interest to end the relationship.

Support groups are not for everyone but might help. One thought I have is to see if there is a way to put in a date night, a DVD you would watch together. I would also wonder if there might be some activity to share with your children, on a porch or in a shaded park or yard.

I keep saying I've sworn off relationships. Then I find someone attractive. I'm glad that I learned from someone else that long time divorced man is quite the ladies' man and uses people. I will not proceed. I do not need more grief. Broken relationships are hard. Please try to work with yours.


Tracy, most of us have been misunderstood or not believed at times... Still, you do not wish you had "cancer." My husbnd and I went through this trauma. I had dermatomyositis, Lupus, Sjogtens,.and AVN, but people wouldn't take me seriously. Then my husband got cancer. Not only was he not taken very seriously, but he was not diagnosed right because he was "too young" to have esophagus cancer??! He wound up living nearly 10 years, but if it had been diagnosed he would still be here! Cancer was a horrible gut-wrenching experience (though I admire the way he went through it!) No other disease gets treated very "special" because the medical system is not working well. I recall towards the end when my husband was dying I was feeling too ill do take care of everything myself (with my own autoimmune mess). My husband's cancer doctor didn't lift one finger to get him a hospital room for respite care! Even after knowing him 11 years??! He died at home with me as the real regular nurse...

One thing you could try--If you have one doctor or nurse who is sympathetic, have them write a letter "to the fanily of" yourself, explaining the serious difficulties involved in this disease--such as use of chemotherapy, steroids, and the like. That did me a lot if good.

Here's praying you get the attention nd care you need!


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sorry for the cancer mention... just feels ike im banging my head on a brick wall sometimes because I look well no one gets it?... everyday is frustrating because so tired. they think its me moaning but I am not.. if have something unsure of I go the doctors. wait for outpatients appointment might be my thyroid as im not on enough thyroid tablets. I know there are lot worse illness no one I know heard of this so annoying..


Oh Tracy, no need to.apologize! We had thought like that too. It's just that the reality is bad for cancer in many of the same ways, and there can be a worse prognosis. Because my husband walked a lot, and "looked healthy" a few didn't believe him. Even a minister who saw him walking at the state fair questioned why he "looked so good." We are simply in a bad time for medical ethics and it affects us all. I still feel getting a letter from a sympathetic doctor can help with family and others however-- ifob you have such a person




Sorry for so many typos! My nook is acting up..


feels so hard to work even a couple of hours then im tired all of the week. nagging me on holiday extra pressure on me.


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