How to help a husband with Lupus

I have looked and looked and can not find any support systems for spouses of those who have Lupus.
2 years ago, when our twin boys were only 6 months old, my husband was diagnosed with Lupus. His world was turned upside down. So was mine. Everything has just spiraled down since that day. He has honestly become a whole different person. I know he can't do all the things he used to since hands and wrists hurt so bad all the time and that bothers him. There is obviously so much more to this than I am going to type.. There is two years of stories to tell. I just don't know how to help him. I am just as angry, scared, and upset as he is. I have told him that even though physically he is the only one dealing with it we are all going through it emotionally. He always says he feels like less of a man since this disease is more common with women. I know he's depressed, we both see therapists alone and together but I feel like he can't get out of this funk.. There is also more I want to learn and know about this disease so I can help him anyway that I can.
I am so sorry to just ramble my point is as much as I am willing to help him and give and get him support I need some also.... I have no one to talk to. So hopefully being here will help me learn more to help him.

Glad you found us! Although the site is designed more with the Lupus patient in mind, we are all friendly folks and are happy to help you as much as we can.

Also, I think almost any support group for spouses of (any) chronic illness would welcome you. Even if their spouses disease isn't exactly like your husbands there are still many things in common.

Cheers,

The fluorescent lights are just as bad as the sun for us. Does he wear sunscreen and a hat at work?
I used to get tiny red dots all over my legs from standing on my feet for long hours. Doctor called it peticutia (?) Tiny broken capillary vessels from blood pooling in my legs.
Is his skin peeling On his legs? You can get a secondary opinion on the rash if you don't agree.

Dee,

Lupus is NOT a woman,s disease but it is much more common with women in their child bearing years. I am an old guy and got lupus along with polymyositis when I was in my 60s. Lupus was very severe: arthritis everywhere, hit my kidneys and GI tract, and cognitive impairment. Polymyositis hit a few months later and almost did me in....I lost 40 lbs of muscle in a week and when everything was finally brought under control I was quadriplegic with a feeding tube. Many months in hospitals and I was able to recover physically and continued on my own. Within 3 years I was able to return to my active life again of skiing, golfing and more.

Lupus is a treatable disease but every case is different and presents, responds to treatment and progresses uniquely. What treatment works for one does not for another so more severe, chronic cases become a 1 patient medical experiment to find the best treatment. It is important to have a doctor experienced treating lupus and also a good idea to get a 2nd or even 3rd opinion for treatment. There are many treatment options for lupus beyond Imuran and plaquinel.

both my diseases were in remission for almost 9 years but lupus has crept back and went after my liver and blood again. Fortunately, I have felt ok but I am on a short lease with my team of doctors and might have to start taking controlling meds again. Have been off all of them for the past 4+ years. No big deal if it keeps me going. In the meantime even though I am in my mid 70s I still ski, golf and hike. Life is different but good.

If you husband wants to contact me directly let me know and I will provide my email address. Lupus is not fun but for most of us, even with severe cases, life can go on. Polymyositis is little less complicated but more devastating because it can completely disable you and actually destroy muscles cells. Not fun and I was lucky to have both survived and made a physical recovery.

Best of luck,

Bill

Thank you. I will let my husband know and reach out to you.