[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 Tom

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]

Your post

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]

Thanks Tom

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. 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]

You're all wonderful

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]

Surferboy

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]

Heavy Question

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

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.