Lupus Forum - Honest Feedback

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Q: Honest Feedback

asked by: Jen779 on November 11th, 2004

New User

I had posted some questions a few days back in regards to my boyfriend being diagnosed with lupus. Thank you for the reply. I would like to ask you all, especially those in a relationship, how the lupus effects that relationship. I not questioning whether to stay with him at all. I love him very much, but am also very scared and I don't know what to expect. If there are any males out there who can tell me how it affects them, it would be appreciated! I know it seems to be different with each person. Specifically, he was diagnose with sle and nephritis. He just came off of being diagnosed a few months ago, and a nasty flare that landed him in the hospital for a few weeks after catching pneumonia. He seems to be getting better and his vitals are stabling off as well, but he is also on a lot of medication. I have done a lot of reading, but I think hearing responses from the people who have to live with this every day would be the most helpful. Thank you to anyone who takes the time to read this and respond, I truly appreciate it!

Replies(3)

patricia142

replied on November 18th, 2004

New User

Hi jen,
I think it is really great that you are helping out your boyfriend like this. As far as relationships go, I have been with my boyfriend for 2 1/2 years, and we have never had to go through one of my flare ups together, so I don't really know if and how it affects the relationship. However, he does know all about my past flare ups. I honestly think that if you truly care about each other, everything will be fine and work itself out! Things may seem confusing now, but once he is on medication for awhile and learns to watch out for certain symptoms that may trigger his lupus, things will get easier for the both of you. Lupus is a hard disease because no one knows that much about it, but all you need to get through it is a good doctor and some love from others Smile

patty

Heathergirl

replied on November 18th, 2004

Active User, very eHealthy

Hi jen!
First, you are a strong woman, and I thank you for searching out answers to all of your questions...Your boyfriend is lucky. Secondly, every person is different when they have lupus......Some people will never have a flare.........Other people will have many a year. My mother has lupus, and I started to research this disease at a young age, for my mother and bc the doctors watch me really close for the disease as well. I know that lupus affected my own mother severely.......She has one of the worst cases heard of, however, again, that isn't normal, so don't worry! But I will be honest.....Her husband left her bc she got really really really sick and couldn't work.......Could barely get off the couch. She had to have a in home nurse come out three days a week to take care of her, but this is not normal! There are many many many many people who live a healthy life with lupus! But you asked for an honest answer. P.S.. Her husband was a dick anyway! Lol good luck with your boyfriend!

Jen779

replied on November 22nd, 2004

New User

Thanks For the Answers!

Thank you both so much for your responses! The last couple of months have been really scary, but I am trying to take it one day at a time. I really appreciate being able to talk to people who understand this disease (or at least what there is to understand about it!). I am also trying to keep him positive, and help him to see that he can still have a good life! Right now he feels pretty yucky too, since he has gained some weight, but you see most of it in his face (i know I read about the "moon face"). This is mostly due to the steroids, correct? He is hoping that will start to subside when they can reduce his prednisone (currently on 40mg). Are there any tips you can give about lifestyle or diet that may be good? I appreciate any and all information! Again, thank you so much, it is good to know that forums like this exist!

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