A question from a girlfriend whose boyfriend was diagnosed with Lupus

[staunchsupporter]

Hi guys. I hope you don't mind my posting in your "area," but I really need to hear from the men out there who are dealing with this disease. My boyfriend was recently diagnosed with SLE, though it's been taking a toll on him for a while now and has, until recently, gone misdiagnosed. I've done alot of research and reading and understand the physical pain, symptoms, fatigue, etc., that he has to deal with. I want to be here for him but I feel like he's pulling away and I don't know what to do. I understand the prognosis and what the future looks like right now, but I love him and I would stand by him through this and anything else that may come his or our way. But I'm not sure if he wants me in his life. He says he does but then he also says that it's not fair to me and he wants me to be happy. I don't want to leave him, i want to be here for him, but if he would do better if I weren't with him, giving him one less thing/person to worry about, is that what I should do? I'm confused. I love him, I want to be here for him I want to be here with him, but I don't want to make it worse. I'd really appreciate any advice those of you men going through this could give. I want to do whatever I can to support him and to not add any stress or worry to what he's already having to deal with.

Thank you!

[Tom]

Hi staunchsupporter,

You're fine posting here since it's man related. :hehe: Just kidding. :)

It's great you have taken the time to learn about this disease, for both of you. I can only give you my thoughts about what your boyfriend is going through based on my own experiences. Being recently diagnosed, he most likely has a lot of phases to go through yet. Shock, anger, worry, understanding and accepting what this disease is and how to deal with it. It can take quite a while and I'm sure that varies for everyone, but we all go through it.

I'm guessing that he has began treatment (Usually Plaquenil at least) which should help him out quite a bit. As far as your relationship, I bet most people after finding out they have a disease give their partners a chance to bail out. I think it's natural to want someone you care about to have a better life, thinking the worst of course. Lupus is not a disease with a time line. You really don't even know how Lupus will effect the rest of your life and it effects everyone differently. I would get him time to figure a few things out, I'm pretty sure he doesn't really want you to go.

I don't think there is much about Lupus that is gender specific, so you can post anywhere really. Of course if you need a mans point of view, this is the place. :) This is a great place for support and you can always join us in chat anytime someone is in there. Good luck!

[staunchsupporter]

Thanks for your response Tom. It's definately a help and I appreciate it. That's pretty much where I am right now. I'm going to give him the time and space he needs to get things as worked out as is possible with this diesease and just let him know I'm not planning on going anywhere:) Can I ask about your situation? Were you with your current spouse/significant other when you were diagnosed?

Thank you again:)

[Nutty]

Okay this story isn't really related to what you are asking, but I think there may be something in it.

When my husband and I were first dating, he had a huge sweating problem. Basically he had felt rejected his whole life (his Mom died when he was 3, his Dad left the 6 kids to be raised by his grandparents, etc.). So, he told me one day that we weren't going to survive because he had this sweating problem and everybody left him because of it. He was trying to reject me before I rejected him, and I said "so, I guess it stops here because I'm not going anywhere. You can't get rid of me like that". I can't remember my exact words, but he said he immediately quit sweating. Then 17 years later, I am diagnosed with Lupus and he has taken the best care of me. And he still goes back to that moment. He said I gave him his whole life back when I didn't reject him at that moment. He has been the most wonderful care giver to me and we have been through a lot in the past 2 1/2 years. It hasn't been easy at times, but we are committed, no matter what.

Hope there is something useful for you in this story. I know I am grateful to have him through this.

Good luck.
Nutty

P.S. Your user name says it all.

[staunchsupporter]

Thanks for your response. I appreciate it. It makes me that much more determined to stand by him--even if he tries to push me away, which he has done from time to time. But it's all fairly new and still being figured out so it's okay. Thanks for that story:)

[Tom]

Let's see, I had been married about 15 years when I was diagnosed. Sadly my symptoms began before we were married but who knew? I'm not sure I had ever heard the word Lupus until my doctor said he wanted to test me for it.

In the undiagnosed years I went through a few heart attacks and bypass surgery. I had classic DLE prior to that but had an older dermy who didn't recognize it. I continued to work until I just couldn't do it anymore and had to quit. Over 4 years later I'm still fighting to get on SSDI. It just floors me how our government can take and take until you need help, then turn around and just ignore you. Sorry for the little rant there. :blush:

My wife and I have always supported each other through thick and thin. She is disable herself for other reasons and has asked me if I wanted to find someone else. I just told her it was too late now and she was stuck with me till the end. :goodvibes:

We've had a lot of great years together. They may not be as great now but really there isn't much I would do differently if I could start over. We will always do the best we can to help and support each other as we always have. Nobody lives forever but we have years of good memories to look back at.

Hopefully your BF figures out soon that Lupus isn't a death sentence. There will be ups and downs but that's just life in general for anyone. I do know that without the treatments we have today, I wouldn't be writing this now. Remember there is always the possibility a cure could be found in our future, we can always hope for that. :)

[staunchsupporter]

Wow, you hit it on the head with your comment about thinking it's a death sentence. Is that a pretty common reaction when you're trying to sort it all out? If you had that reaction, how long did it take you to work through it? Right now it seems like it's basically all negative, the pain, fatigue and everything else have seemed to get worse and are unrelenting--does it ever get any better? I hate to see him in such pain and dealing with not being able to do all the things he loves to do but it just doesn't seem to be getting any better or even stay the same, it seems, as time goes on, that it's only getting worse. I'm still hopeful, I always will be, but I'm not the one having to deal with all of this the way he is and I just want it to stop for him--or at the very least not keep getting worse.

[Tom]

I think that anyone who finds out they have a serious disease thinks the worst at first. A lot of the things you read are worse case scenarios too which doesn't help the average patient trying to get a handle on things. There are many people with mild Lupus symptoms who lead a pretty normal life. I did very well for many years and may be still if I'd been diagnosed a decade earlier.

Your BF needs to get Lupus under control to start feeling better. His rhuemy should be his best friend right now until that happens. He needs to write everything down to tell his doctors. Lupus can mimic a lot of other things and secondary diseases are common with us. Pain control will be first on his list I'm sure. That by itself will help a great deal, maybe even a personality changing effect for him. You don't really want to be around me when I'm in pain. :mad: Being in a bad mood lets me know I need to take my pain meds.

I hope this helps. Take care and good luck. :)

[staunchsupporter]

Thank you!

[LolaLola]

Dear Staunch Supporter, I found the pain etc. came under control most of the time when I got on the right mix of medication. It can take a little while to find the right combination but there is certainly good reason to be hopeful of an improvement.
x Lola

[staunchsupporter]

Thanks everyone for the information and advice. I hope people keep leaving information but I can tell that from what you've all written already, I feel much more hopeful about this than I did just a few days ago. Everything's being worked out little by little and, hopefully soon, things will be better for him. I still won't give up, but that's so much easier to do in a positive way with all of your input.

Thank you all:)

[Surferboy]

Staunch supporter, like your boyfriend I'm also a newly diagnosed male.

You've been given some good advice.

But I just want to add how I felt when i was diagnosed. As someone else mentioned, it feels like being given a death sentence. You read so much bad stuff and it all gathers in your head. And this may be what also happened to your boyfriend. And the way he is thinking is that he does not want to put you through the pain and heart ache as he loves you so much.

My heart broke with the thought of my wife and mum having to suffer because of my sle. I even thought about giving my wife a get out clause. But then I tried to think positively and things started to clear up in my mind.

I don't know what else to say other than to speak to your boyfriend. Maybe talk to him about attending some Rhumy appointments with him. BUT be careful as I know how men thing (seeing as I am one) and they may be embarassed to have what is commonly know as a "womans illness"!!!

I'm hoping he is doing some research on here to prove that it may not be all that bad :)

Good luck :)

[staunchsupporter]

Thank you. I appreciate your input and advice. I've let him know that I'd like to be there with him for some of his doctor's appointments but he doesn't want me to go. I think less because it's considered a "woman's disease" than because he is and always has been very strong and, when it comes to being sick, he's very independent--definiately not the type to be babied:)

I do have a question for you and anyone else who might be in this boat, are you dealing with any organ involvement? As it is, the things you read do make the disease seem bleek and even treatment seems fraught with problems. But when you add organ involvement into the equation--I'm not even going there. So I was just wondering about that.

How have things been going since, I'm assuming, you say the rhumy and have been on meds? Does it take a while to get that all worked out or, with the meds available, did you experience some immediate and, hopefully, strong relief?

Thanks:)

[SoCalEric]

I'll give ya some of my story. Started dating my now wife when I was a perfectly healthy guy..or it seemed that way. Various problems started creeping up now and then. My Doc. treated me like a hypochondriac much of the time, although I did have a few troubles that he couldn't figure out. Hospitalized with phlebitis and pulmonary emboli he said I just must've been unlucky. MANY other troubles kinda slowed me down and made life more painful. Me being me I just kinda delt with it as best I could. My wife stuck with me through this and was a rock for me to lean on....and helped my keep my mind off some of the pain. By the time I got a diagnosis things were VERY bad. Nephritis had set in and I was miserable. Started chemo not long after diagnosis which totally turned things around....I felt human again! We got married not too long after I had finished chemo.
It's tough to learn you have a disease, and it scared me, but a big part of me was relieved that that Doc. finally agreed I had something. It's scary at first (still is I guess!), but you learn to live with this. Be patient, there's pain with this, moodyness (is that a word?), plenty of ups and downs. My wife's been there through it all...and it hasn't always been easy or her either. But hey, we just cellebrated our 10 year anniversary, and I'm VERY glad she's been along for the ride!

Best Wishes,
Eric

[keebler]

Hi,

I just want to add that lupus affects us all differently. What goes on with one person might not affect another one with lupus.

No one with lupus or a healthy person off the street can predict their health. It is such a roller coaster ride of emotions when we are first diagnosed. It takes awhile to adjust to the fact our lives have changed forever.

When I found out I had lupus, I told my husband if he wanted out of our marriage, I wouldn't blame him. This is what he said to that statement. "In our wedding vows it says till death do we part. For better or worse."
We will be married 34 yrs. this Oct.

Hang in there with him. Give him his space when he needs it and comfort. I know it is a tough road to follow but with love helps the travel a bit smoother.

Please tell him hi and he is welcome to join this site too.

Take care,
Lyn

[cad]

Hi staunch supporter,
Just wanted to say welcome and its really great that you care so much about your partner.

Good luck with everything, i hope things get better for you both soon.

Take Care

Cassie :)

[staunchsupporter]

So, what happens when you feel so exhausted physically, mentally, emotionally, that you can't even imagine it ever getting better? Have any of you gone through that? What did you do? What helped? How did you handle it?

Thanks

[SoCalEric]

You talking about yourself or your BF?:).
The "just diagnosed" time can be very difficult....on both of you. Don't know where you are but there are support groups in many areas, sometimes it's nice to be able to talk face to face with others, but it is a bit more difficult for men. When I was diagnosed there was no internet, so no message boards, and I went to a support group meeting in my area. All women of course, very nice people and they made me feel welcome, but I felt a bit outta place and didn't return. With me it got easier as time moved on. I got used to the changes lupus had forced me to make in my life, learned to live with it. I tend to deal with things myself, drives my wife nuts somtimes, but she can also tell when I need my space. I NEED time to myself now and then.
Of course if you feel the need, talking with a counselor can be an option also. Never tried it myself, it's just not ME, but if you think it'd help you give it a try.
I think I had more problems, emotionally, BEFORE my diagnosis. Had a Doc. that treated my like a Hypochondriac, when I KNEW there was more to it. Being told I had Lupus was a relief...."Yay, I HAVE SOMETHING". He let me know by leaving a message on my answering machine when I was on vacation. When I got home on a Sunday I called my Mom who I knew had a medical dictionary so she could look up Lupus. At least these days it's pretty easy to get information. I remember going to the Library to look for a book and found one that was very out of date that made it sound like I had 10 years to live....if I was lucky. Scary stuff!

Eric

[cad]

I still feel like that!!

I guess you just have to keep going.
I am a mum so thats what keeps me going.

I just look at it in the way that i am really glad that its me and not them and if i have to deal with all of this for them to be ok then thats ok with me.

And i also think that there is always someone else out there with a lot worse to deal with than me.

Sorry you are finding things so hard.

Things will get easier

The only way to deal with things is just take things as they come and deal with those things one step at a time.
And try to make time for the normal things and let your boyfriend decide what he can do and what he can't. It can be difficult to feel that people around you are trying to restrict what you do because you are sick.

I know it must be very hard for you because you must fee so powerless, but try to stay calm and not allow the disease to spoil the good things or drive a wedge between the two of you.

Your boyfriend will probably only realise that you are not going to bolt for the door over time passing and you still being there.
Things will cradually change for the better, but it is a lot to take in for both of you and things take time.

I hope things get better for you.

Take Care

Cassie :)

[staunchsupporter]

SoCalEric - I'm talking about my BF. I would gladly take away his fatigue if I could. He seems to be resigned to the fact that things, which are already really, really bad, will only get worse and that the future is bleak. There is serious organ involvment so, though I hate to even think it, from what I've read, he may be right. I'm still here for him but I want to do something to help him with the pain and fagitue--yet I know there's nothing I can do, not in that way at least. So, do the meds the rhumy will give really make any kind of a difference in the fatigue and the pain? I'm frustrated because he's had to wait so long to get in and, with the organ involvement, I think they should have fit him in right away. I know, I'm coming from a selfish point of view, but I just don't understand why the appointments are so far out for this. It just seems messed up. I'm still hopeful but I wish that I could give him even just a little hope. I know he's the one dealing with it all but I'm worried that his resignation as to where things are going to go from here on out, just doesn't seem to be helpful. I understand being realistic, but how can you know how things are going to go until you start on the meds that a rhumy will prescribe? Sorry, I'm rambling. I'm just scared and, as I've already said, I wish I could take even some of his pain away--it's just not right and I just don't get it.

[LolaLola]

Staunch Supporter, It is very hard on you to be seeing all this.
Please make sure you look after yourself, and get yourself a treat!
You need to pace yourself, you are finding out what you can about the disease, and doing all you can.
IF it helps, I was very seriously ill with brain involvement five years ago. It did get a lot better!!!!
x Lola

[staunchsupporter]

Thank you! Wow, that must have been really tough. I can't even imagine. Were there times where you got down and didn't think that you'd pull through? I hope that doesn't sound like a stupid question but I just feel so helpless watching my BF going through this and I'll be positive for a little while and then things just seem to get even worse for him. I'm just hoping that this is not a death sentence--but, at the same time, I don't want him to suffer.

Thanks again.

[staunchsupporter]

Thanks CAD. I appreciate it. I've learned to just be here for him and, at his request, I have worked and continue to work on keeping things as "normal" as possible and on not even trying to baby or restrict him. I trust him and he knows himself and his abillities and limits more than anyone. I'm just here to support and love him. It just makes me so sad when things are so difficult for him--with him, I know they're bad first when I can see it, then when he actually talks about it because normally he's very stoic and doesn't like to let people know how he feels. At this point, his kids are just about the only thing that's keeping him going. I guess from all my fear that is coming out in these last few posts, what I'd like to know is, when you see the rheumatologist, do the meds and things they put you on really work--not just for the pain and, hopefully also the fatigue, but do the actually make you feel even a little bit better?

[cad]

Hi Staunchsupporter,
Everyone is different obviously. I think that is the frustrating bit, sometimes its a bit trial and error to find a combination that works best for the individual.
They do say that plaq should give improvement, i have been taking it for just over 4 mths and i really didn't think i was getting any benefit from it until last week when one of the gps at the surgery told me to stop it because of my stomach. I had alos been taking steroids at the same time. Was told to stop the plaq and stay on 20 mgs of the steroids.
Well the following day i could hardly walk around, hardly breath, basicly i was in a right state. And my stomach was really awful, i could hardly get and food to go down, and had burning right upto my throat. As i get reflux oesopahgitus, the steroids had made it really bad.
Anyway what i'm trying to say is that for me now i know that the plaq has actully help me stop getting worse and has improved the fatigue.
The plaq just takes quite a while to work (3 - 6 mths) and also i think it has helped with some of my pain.
I suffer with chronic pain so take strong pain kilers every day.
My doc and i mean my gp not rheumy, tries to treat me symptomatically and then the plaq is there in the background to modify the effects of the disease.
I am also about to take start methotrexate as this is supposed to be effective for my disease and i have still been having more bad days than good.

I would strongly advise that if not already then your boyfriend seeks some decent pain relief, lots us take different thigns for pain but a few of us take tramadol like me, i take this every day with paracetamol and it does stop the pain from being unbearable most of the time, then i have liquid morphine to take in emergencies when i can't cope.

No one should have to go through everyday in pain and pain is actually exhausting in itself. Its very hard to try and have a positive attitude to the illness when pain dominates every waking minute. Your boyfriend definately needs to get something to bring that under control.

Some docs are reluctant to prescribed strong pain meds though so he might have to be prepared to stick to his guns.

I wish you all the best with everything :there:

Take Care

Cassie :)

[lupyman]

Hi Staunchsupporter, My wife has expressed many of the same things you have. I keep her completly informed of my Drs. visits. My approach has been to concentrate on battling the fatigue, knowing that there are many folks out there a lot worse off than me. I have come to terms with my daily pain (although the new headaches I'm having are testing me). The Drs. tell me my CNS is being attacked by my SLE. Your boyfriend is lucky to have you to help him adjust to his new life with lupus. He needs to know he is not alone out there. Many good folks on this forum can help answer questions. As for me I refuse to let lupus stop me from living life to the fullest. I am only 45. I have some very bad days and some good days too. The trick is to learn to cherish ALL the days. And to cherish the loved ones around you. You be sure and not forget to take care of yourself through all this!

[joflower]

I was really touched by your post since I am going through a similar experience. My friend has Lupus and he was diagnosed about 4 years ago. Ours is an odd story in that we dated many years ago and had not seen or spoken in almost 18 years. We reconnected via the internet (thank goodness for MySpace!) and have re-established our relationship. We have spoken about a future together but he is very hesitant because of the lupus. Like you, I am willing to commit for the long haul and feel I am prepared (as best anyone can be) for what I am taking on in this relationship. He, however, is very hesitant because he feels it is unfair to me and worries about what I will have to "give up" (his words. not mine) to be with him. I think it is important to put things in perspective; noone has a guarantee how long or what quality of life he/she will have. Every day is a gift and if you can share that gift with someone you love and who loves you, then it is a worthwhile endeavor. Continue to be patient with your boyfriend as we cannot truly understand what the person is experiencing but I find that remaining open minded and re-assuring him that I am here for him has been a positive experience for both of us (note that I said positive and not easy!). It gets very trying sometimes but to make the most out of each and every day is the reason we are here! Good luck to you both. I will be interested in hearing how things are going for you.

[staunchsupporter]

Thanks. Wow, I hope that they figure this disease (and all the other diseases attached to and like it) out soon. It's amazing that it's been around for so long, yet they seem to know so little about treating it. I understand that everyone reacts differently both to the disease and the meds, but it's got to be horribly frustrating for those of you who are having to deal with this personally day in and day out. It's frustrating to me, and I don't have the additional stress, problems, etc., of dealing personally with the disease, so I can only imagine how you must feel.

I do appreciate your letting me know about the meds and what you're on and how they're working for you. I just hope that the rheumatologist will be able to get him going on something that will at least help immediately until they can get things figured out over the longer term.

Thanks again. I admire your strength and appreciate your willingness to share your own experiences.

:)

Hi Staunchsupporter,
Everyone is different obviously. I think that is the frustrating bit, sometimes its a bit trial and error to find a combination that works best for the individual.
They do say that plaq should give improvement, i have been taking it for just over 4 mths and i really didn't think i was getting any benefit from it until last week when one of the gps at the surgery told me to stop it because of my stomach. I had alos been taking steroids at the same time. Was told to stop the plaq and stay on 20 mgs of the steroids.
Well the following day i could hardly walk around, hardly breath, basicly i was in a right state. And my stomach was really awful, i could hardly get and food to go down, and had burning right upto my throat. As i get reflux oesopahgitus, the steroids had made it really bad.
Anyway what i'm trying to say is that for me now i know that the plaq has actully help me stop getting worse and has improved the fatigue.
The plaq just takes quite a while to work (3 - 6 mths) and also i think it has helped with some of my pain.
I suffer with chronic pain so take strong pain kilers every day.
My doc and i mean my gp not rheumy, tries to treat me symptomatically and then the plaq is there in the background to modify the effects of the disease.
I am also about to take start methotrexate as this is supposed to be effective for my disease and i have still been having more bad days than good.

I would strongly advise that if not already then your boyfriend seeks some decent pain relief, lots us take different thigns for pain but a few of us take tramadol like me, i take this every day with paracetamol and it does stop the pain from being unbearable most of the time, then i have liquid morphine to take in emergencies when i can't cope.

No one should have to go through everyday in pain and pain is actually exhausting in itself. Its very hard to try and have a positive attitude to the illness when pain dominates every waking minute. Your boyfriend definately needs to get something to bring that under control.

Some docs are reluctant to prescribed strong pain meds though so he might have to be prepared to stick to his guns.

I wish you all the best with everything :there:

Take Care

Cassie :)

[staunchsupporter]

Hi lupyman. Thanks for your response. It's good to know I'm not alone on either side:) He's been more open with me since the diagnosis but I wonder if he's really letting me see and know about how he's really feeling on a regular basis. I understand that he doesn't want to burden or scare me. I just keep letting him know I'm here and I plan to stay here. How long have you been dealing with Lupus? How long from when you started feeling not quite right did it take for them to finally diagnose you?

Thanks again:)

[staunchsupporter]

Hi joflower. Thanks for your message:) Your bf(?) sounds very much like mine. Sometimes, though, I wonder if my being there is more of a burden on him than a support. I'm probably just worrying too much. I have learned to just be here for him and let him lead the way with our relationship based on how he's feeling and how much he feels like sharing with me. Though I'm a natural caretaker, I've learned to back off, because he does not like to be taken care of in that way and I'm learning as things happen what he needs from me. I just sometimes feel that maybe when he talks about it being unfair to me, or the fact that someday he'll be gone and I'll be broken hearted now or later and that he wants me to be happy, etc., etc., etc., that maybe that's what he really wants--for me to leave. He's also said he doesn't want me to leave and his actions back that up. But I want so much to help--in any way I can and in whatever way he needs--that sometimes I feel as if that in and of itself is an added stressor on him. I know he hates when I worry, so I try to be realistic and try not to worry so much or to keep my worry to myself, but he's smart enough that he always sees through that. I don't know. I'm rambling here. I just don't know and I think that's the bottom line. Though I believe in my heart it's not true, I sometimes wonder if he really would be better off without me, if it would mean less stress for him, etc. Anyway, it's good to hear about your experience. He is very lucky to have you:)

[InTheLup]

First, let me applaud your loyalty to your boyfriend. Chronic disease can be hard on all involved.

Based on my own experience, your boyfriend may well be dealing with his own fears and suffering depression. Lupus is a scary diagnosis. It took me a very long time to accept the reality and, even now, I still struggle with keeping a positive outlook. I agree with everyone else that he really doesn't want you to go. He's just ovewhelmed. Mentally, Lupus is very hard for men. We are raised to be hard workers, to ignore pain and fatigue. Women of course, do the same but for men we are measured almost exclusively by those two things. Facing the possibility of being unable to live up to those self imposed demands is soul crushing.

Keep doing what you are doing. He needs you. Given time he will learn he can live a good life with proper care and he'll appreciate that you didn't let him foolishly push you away.

You have my utmost respect. This kind of thing can dissolve a marriage, even strong ones, yet here you are refusing to let it conquer your relationship. He's a lucky guy.

[staunchsupporter]

Thank you for your wonderful words of wisdom. Things are still being figured out as far as this disease goes but I'm still working hard to stay strong for him and I'm here for him.

I really appreciate your insight. I think you're right on. It can be difficult at times because I sometimes feel as if I'm maybe an afterthought as far as us spending time together. I know and understand that he has alot going on on top of the affects of the disease and I keep trying to remind myself of that but sometimes it's hard. I don't want him to know that I feel that way, though, because the last thing I want to do is add to his stress and I definately don't want him to have to worry about me. Your post was/is helpful for me as far as that goes.

Thanks again:)

[LolaLola]

Dear Staunch Supporter, You asked if I got down when I was seriously ill some years ago. The answer is that I realistically thought that I should put some provision and support in place for my children. They were youngish, 15 and 12 at the time. It did make me re evaluate things but I always knew that I wanted to stay alive. (I hope that doesn't sound too wet, I am not good at talking about myself) Hopefully you will know what I mean. The other thing is that Prednisolone can certainly in high doses really intensify certain emotions. I wonder if this may be a factor for your Boyfriend.

I can still remember how I felt mentally and it wasn't good. There are gaps in what I remember,but the feelings remain.For some of us Lupus can be bizarre illness, like fighting an enemy who can change tactics regularly.

I am making a bad job of this but I am always here if you want to share your thoughts.
My Husband and Children have suffered too watching me and my Daughter has Lupus. I do know how hard it must be from your viewpoint.
x Lola

[onetay]

staunchsupporter,
I am not a male but i can tell you I have sle. I pushed everyone away I didn't want them to have to deal with or handle the fact that I may die. Like Tom said I seen on the net what was posted and to be honest it scared me, so my thought was if it scared me what was it doing to people I cared so much for?

There are ups and downs. Hold on to the times that you have that are good and reflect on them to get you thru the downs. As for your bf he may need an antidepressant to help get him up in emotion, it has helped me have more positive days.
As for pain ask the doctor about ultram. It is a pain pill that is non-addictive and can be taken only when needed. It is not something he will have to take forever but it has helped me. I did not want to admit that I emotionally was down in the dumps, it took a general doctor to see it.

There are a lot of things you both will have to learn and handle but the first step is to let him know you are there and have no plans of going anywhere so it's time to move on to getting comfortable. That is what it comes down to for us comfort because at this point there is no cure. That is not to say one won't be found that is what we all hold out for a cure.
You have learned a great deal already time is a gift and one we never know will end or how so we need to make the best of what we have no matter what that maybe. I have known for 15 years about my lupus and still everyday struggle with the fact that my life is forever changing. I put on a smile and say okay what is it today and find away handle it.

I think he just wants the best for you and if he knows that is him (he may need reminded from time to time) he can focus on getting things under control and you can help him in may ways. He may not be able to do the things he once loved but he can find new things and start loving them. Remind him when we were born no one got a life will be easy for you pass. This is no different than raising children(it's not easy ask anyone that is a parent),having a house forclosure happen, well you get the picture. I don't mean to sound harsh,or be little the disease(far be it from me to do that).

I am sure he is a strong person he just needs remind of that too. He can use carts to shop with you if the pain is too much, a temp parking plate may help with the walking distances,and he may not want to do this at first but it helps to make as normal as possible for those of us in pain and it can be temp that is the good thing. I hope you do go to the chat room it might help you also. I hope that things get better for you but don't give up on him and it don't sound like you are so just work on comfort.
Tammy

[mum86]

Dear Staunch Stopper

My son was diagnosed with SLE, properly this year, he had had symptoms previously but docs said he was on borderline - he had pericarditis, and this came back 3 times - flaring up everytime he was due to go back to university. This year he had a real bad attack which affected his bowels - inflammed, diaroherra, vomitting, weight loss - we felt so helpless as he was literally wasting away in front of our eyes - he is 23yrs old and his weight was 11st and he went down to 8st. As a parent, seeing your child like this is so upsetting - I just didn't know were to turn to for help. He was in hospital for 3 weeks and this was when they actually confirmed that he has SLE. We were in shock at first and felt so alone, no details no help from docs. After being diagnosed, my son's life just fell apart - he lost his confidence, didn't want to go out as he was worried how other people would react once they found out he had lupus. It took us a while to get through this and it actually bought us so much closer - talking about it, discussing ways of helping each other. I am happy to say he is much better now - he was fortnightly blood tests, sees his consultant every 6 weeks and is on medication steroids and azathiropine - have really helped - intially he had hair loss and excessivel weight gain - this has calmed down now as the docs have lowered the dosage.. on the whole he is getting the meds he needs and all is looking good for now.. althought it is always there we have learnt it is better to face it and live with it.. rather than sit and work yourself up to a state and make yourself worse... I hope this helps..

[mjd13076]

Dear Staunchsupporter,

I saw that you originally posted your post back in August. Hopefully you're still around this forum and most importantly, still with your boyfriend.

I'm currently 32 and was diagnosed with SLE when I was 24/25. I was single at the time but then entered a relationship shortly thereafter. I was, at first having a rough time with dealing with having Lupus and all and felt EXACTLY the same way your boyfriend feels. I was thinking that "this is a really great girl... why does she want 'damaged goods'? She deserves better..." and so forth. I eventually told her and she was very supportive and very sweet about it all. Things didn't work out between us for different reasons but then a year later I met my wife and she, too has been extremely supportive-- almost motherly in that she tries to keep on top of me taking my meds (plaquenil).

The thing is, your boyfriend CAN lead a normal life. Yeah, it sucks extremely bad when you find out that lupus is considered a "woman's" disease and that it's rare for men to get it and all. But he needs to plug away. It can be painful during flare-ups but it just becomes a part of you and who you are after a while but you certainly don't let it DEFINE you. You learn to accept it even though you know that it sucks to have! It sure as heck hasn't stopped me from doing anything-- I still go biking, hiking, play sports, etc. In fact, knowing that I have it makes me push myself even more because I refuse to let it get the best of me.

Give him time. Perhaps give him a little space. Let him find out how to deal with it and learn to live with it. As long as that can happen, he'll be okay. And so will you. And if you both don't make it as a couple, then at least you now you've gone down trying to give a damn.

--MJ

[bundy]

hi iam male 43 had lupus 29 years also renal failure and kidney transplant al be blunt naw tell him to get on with life becouse your only hear the one life so get on with it theare alwayes some one worse off yours bundy if he needs to talk to me i am willing to talk