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Thread: New member - need help supporting a loved one

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    Default New member - need help supporting a loved one

    My boyfriend who lives in Boston (I'm in Ontario, Canada - about 12 hours away) was recently diagnosed with Lupus. Unfortunately, they think he has had it for quite awhile (the only indication we have of possible time line puts it at about 6 years ago), and has pretty extensive organ damage - most significantly his kidneys, but also the spleen and possibly the liver.

    He has been put on immunosuppresants to try to halt the organ damage. He has just started taking them, and of course feels absolutely awful as a result.

    When he was initially going through testing, they thought the kidney damage was actually a tumor. It's been about 8 weeks total from his initial suspicion that something was wrong (he had a seizure while shopping). He only got the diagnosis last Tuesday.

    We've been together for about a year, and had planned to move to Toronto next summer to be together. All plans are on hold at this point, obviously. He's afraid to see me because he "doesn't want me to see him sick". I've told him that I will stay with him through this (and he says he wants me to), but explained that though I can give him some time to come to terms with what is happening, there will come a time when I insist upon going to see him.

    I just don't know what to do for him. He's very private about everything - he only told me he was sick (when he thought it was a tumor) about 2 weeks ago, after weeks of me knowing something was wrong, but not knowing what. He's opened up a bit since the diagnosis, but I try not to ask too many questions, since I know he hates talking about it. I just feel so helpless. Not to mention a million other emotions - angry, ripped off since we were forced to wait to start our lives together, and now we both know it can never be what we envisioned, scared, lonely. I'm just a wreck. I desperately want to do whatever I can to help him deal with this, but he doesn't know what he needs and either do I.

    Any suggestions people may have would be welcome.

    Sharon

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    Sharon, I am so sorry that you and your boyfriend are going through this. It is terrible how lupus can change lives so much and take so much away from people, especially your future dreams.

    I don't know how much I can help you, all I can do is tell you what it is like to be a person with lupus. I am not as sick as your boyfriend because mine was caught earlier. I think sometimes they don't look for lupus in men because it's usually women who get the disease. Anyway, here's what my experience is like. As a person with lupus I deal with a lot of guilt that my husband, kids, family have to suffer through this disease too. I cannot do the things I used to do, can't be as active and have days where I am bedridden. It is especially hard for me because I have always been very independent, active, and self sufficient. Over time I have begun to realize that those around me love me for who I am, not how much I can do. However, I still have the underlying fear that they will all eventually get sick of this and leave me.

    I don't know how much of this is going on with your boyfriend. He may feel like he's cheating you out of a good future. I'm trying to change my thinking and think that this is not the future I wanted, but hopefully it doesn't have to be bad, just different from my original plans. I know you have verbally reassured him that you will be there for him, but the most helpful thing might be for him to actually see that you are there for him over time through the worst of everything. I would think all of this fear and uncertanty might be even harder for a man to cope with. Hopefully he will be ready for you to visit him soon and you can try to make new plans together.

    I hope some others come along with other thoughts and ideas. There is at least one man who posts here and I hope he responds to your post. There are also family members and friends of those who have lupus who post here and ask questions, so please feel welcome to continue to post here. Let us know what happens. Take care.

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    dolmansaxlil:

    Hi. I am vey sorry to hear about the scene with you and your boyfriend.

    I am a guy with lupus. I've had it for about 14 years. I'm married to an awesome woman. I've been going through a fairly hefty flare-up lately. I just got home from a kidney biopsy as I have kidney involvement as well.

    So, I think I understand what you and your boyfriend are going through, not only as a lupus patient but a guy who has lupus.

    First of all, when I first had a problem and with any flare-up I've had since, I can tell you that I felt very bad physically. So, your boyfriend feeling as bad as he does could very well just be going through the beginning stages of getting things more under control. I certainly hope that's the case. It will take a little time.

    Did they give an indication as to the extensiveness of the damage? Is he seeing a nephrologist (kidney doctor)? How about a Rheumatologist (they treat lupus)? Is he on anything else besides the immunosuppresents?

    As far as what to do to help your boyfriend, here's what I would ask him. I would ask him what he would do if the roles were reversed and you were the one that was really sick. How would he handle it? What would he do? I'd ask him to really look at that aspect of it. Hopefully, he will get that you are there for him and that it's okay to communicate.

    I can tell you, and I think anyone on this site will agree, that one of the biggest things with this disease is understanding and support from others. It makes all the difference in the world. He is very lucky to have you.

    As far as your future, it doesn't have to be the end of the world. Get as much data on lupus as you can. The more you know the more you can do about it, particulary with diet etc. You can always post questions on this site. There are some really awesome people on it that are more than willing to help.

    I hope this helps. Feel free to communicate. Your boyfriend should get on this site too. If he has backoff on that he can always e-mail a private message with the "PM" button on the bottom of the text box.

    I hope things go better for you both.

    Andyman

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    Thanks, both of you, for your replies.

    The only med he's on right now is the immunosuppresants. He just started them last Friday, so I would imagine they wanted to get those working before they figured out if he needed anything else. That's just guesswork on my part. I've read a few of the posts here, and noticed a lot of people are monitoring different levels related to kidney involvement. As far as I know, they don't have him doing that - but it may just be something he isn't telling me.

    From what he's told me, his kidney damage, at least on one side, is fairly extensive. When they initially thought it was cancer, they debated removing the "tumor" and decided against it, since it would involve taking about 40% of his kidney and chances are it leave too much damage to function at all. I'm not sure what the word on that is since they diagnosed it as lupus - whether that's the extent of the damage or if it's more or less. They haven't really investigated the other kidney as of yet, though apparently it's in the plans. They were so focused on figuring out the initial problem that investigating the extent of the damage through his organs hasn't happened yet. He has both a nephrologist and a Rheumatologist out of Boston Medical Centre and from what I understand, the level of care to this point has been excellent, so at least I know he's in good hands.

    In his case, I don't think it was a matter of not thinking about lupus as a possibility because he's a man (though I have read things saying that happens a lot). His first problem was about 2 months ago, and they only realized it was a major problem the last week of July. So they didn't waste a whole lot of time diagnosing it - he just either hasn't had a lot of problems or hasn't bothered to investigate them (option 2 might be more likely with him).

    As far as what he wants for "support" - he would like me to just pretend it isn't happening and not mention it. He knows that I can't do that - he doesn't understand why (and I'm afraid to really try to explain it to him), but he realizes that I AM trying and that I'm not asking him all the questions I'd like to. I recognize that he's trying to keep me in the loop about it - more than he's comfortable with - so we've kind of worked out an unspoken compromise about it.

    I'm a data person - I like to know as much about things as I can - so I spent the week following the diagnosis pouring over different websites reading as much as I could. It's interesting how quickly I started to relate to some of the stories I read. A few friends who were very concerned and supportive when we thought it was cancer, upon hearing the lupus diagnosis basically breathed a sigh of relief and said, "Well thank goodness it's not cancer" not understanding that his diagnosis was far from a relief. But I think that all comes down to cancer being something everyone has experienced in a loved one and lupus being relatively unknown in comparison. I'm considering getting involved in the local Lupus foundation, simply because I think it would help me to deal with it knowing I was at least doing SOMETHING.

    As far as posting here - he would be upset if he knew I was posting. As I said, he wants me to just not worry and pretend it isn't happening. I mentioned to him that I was going to see a counsellor about how I'm feeling about this whole complicated situation, because I don't want to take the anger I'm feeling at the situation out on him. I'm just lonely and feel so powerless. Even before he got sick, I had a hard time dealing with the long-distance nature of our relationship because I didn't like being apart from him. Obviously, this increases some of those problems, and I feel like I need some support in dealing with that so I can be more supportive for him. Even that he wasn't thrilled about, but understands that it's what I need so he was okay with it.

    Ugh. I'm babbling. :roll: Thanks for reading, and thanks again for the responses.

    Sharon

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    dolmansaxlil:
    My thoughts are with you. I can understand your feeling of helplessness.

    I am a mother with a 13 year old daughter with SLE. Although she is the one with lupus, I want to help her in everyway!!! When she was diagnosed on June 1, 2005, I went into information overload. PLEASE, please, be carefull about information on the web and in books. (I only mention this, because of what I did this summer!!)

    There is a lot of good information, but there is a lot of crap too. Some sites are a gimick to sell you something, some books may be old, and contain outdated information. The latter may get you upset, and I would hate for that to happen to you. There are great sites, such as WeHaveLupus.com, as well as pinto.org.

    Seeing as you live in Canada too, Lupus Canada has a lot of information and can guide you where to find info. The caring, informative people on this site have great suggestions about books and the like.

    EVERYTHING GOOD IS POSSIBLE !!! :angel:

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    Thanks for the warning, mommymc. I've had a couple relatives diagnosed with rare disorders over the past few years, and have become VERY aware of the awful quality of some sites. I stuck with major sites - Lupus Canada was one of them, and I also had a friend of mine who is a doctor send me a couple of medical journal articles on the topic.

    The biggest problem I've run into is that well the articles on Lupus Canada try to be encouraging (the 90% survival rate at 10 years, etc), none of the "encouraging" things seem to fit his case. He was diagnosed after a long period of having it, he already has pretty extensive organ damage, etc.

    I think the worst thing for him is the exhaustion coupled by not being able to sleep. He hasn't had a good night's sleep in a couple months, and he's a narcoleptic, so insomnia is a TOTALLY new occurance for him. I've seen him fall asleep during a conversation while standing up in line at a store, so the tossing and turning all night is really taking a toll on him mentally.

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    Sharon:

    I agree with mommymc. Get data but be careful of "cures" etc.

    I hope your boyfriend comes around. I do understand. It took me months to go to see the doctor. I went and then ended up in the hospital for 2 weeks. I've gone through periods of taking myself off of medication, not following doctor's instructions etc. I finally got it through my thick head that I need to use all of the tools to keep things under control, i.e., medical, nutrition etc. It may take him a bit of time.

    Stay hooked up here. You can always get some good wishes, understanding and some good viewpoints to help you along.

    Andyman

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    Sharon, I'm gad you are going to a counselor so that you can have someone to really be able to talk to you feelings about. This must all be really scary for you. Hang in there and let us know how you and your boyfriend are doing.

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    Sharon~

    I understand how your boyfriend feels not wanting to talk about it... I was diagnosed in July too, and didn't want to talk about it at all... In fact, I am still surprised at how active I have been on this board. Aside from whining in my livejournal about all of this stuff and the people in this forum, I really only talk to my best friend, and drive him absolutely nuts... Even my family, who I see everyday and work with doesn't know most of what is happening to me physically or mentally.

    Something my best friend told me, that made an impact was, he knew it was happening to me, but, I wasn't the only one going through it. It was all new and scary to everyone around me, too. I wonder if he understands that aspect of it? And maybe, if he did he'd change his perception.

    Part of the reason I don't like to talk about it, is because (believe it or not) I really am not the type that talks about myself. And never have been. I typically solve everyone else's problems and deal with mine on my own. So, I flash my trademark smile, and everything is fine, and everyone is none the wiser. Sometimes, it's easier that way...

    I really hope that he will open up to you... Can only imagine how you must be feeling.

    I hope your boyfriend starts feeling better soon!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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