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Thread: Significant Other with Lupus needs time alone.

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    Default Significant Other with Lupus needs time alone.

    Been dating/living with my significant other for about 8 months. We were planning future things together. Trips, grandkids, projects. He was diagnosed with lupus about 1 1/2 years ago and had a flare up about 4 months ago that has not gotten any better. Very difficult time controlling the pain due to his profession - cannot take narcotics. Just a couple of days ago he received information from his doctor that he has two other very rare diseases. Poor prognosis. I asked if I could do anything for him and his reply was "I need to be alone. I have to deal with these illnesses and figure out what is going on." I respected his wishes and left. I did not want to. I would have been willing to stay and help him thru whatever happened and I told him that.
    I just wondered if this is a common reaction. Do I keep in touch with him or wait for him to contact me.

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    Welcome to WHL!

    I am so sorry your SO was diagnosed with lupus and now two other illnesses. I would speculate (not an expert by any means, just what I've experienced) that maybe he needs some "space" to grieve the new diagnosis and to come to terms with it (them). I imagine he's worried about being a burden to you and is concerned about what kind of future you two would have if you would remain together.

    I would continue to call or email him every couple of days just to see how he's doing and if he needs anything. Take his lead-if he's wanting to talk about it, be a good listener. If he doesn't seem to want to talk much, keep the conversation light. If he seems to be depressed, suggest a counselor (either jointly or just for him).

    Do your research so you are readily familiar with his conditions. Nothing says I Love You like a partner who does some research, reads the information and asks him questions. Be interested.

    My DH has only accompanied me to the doctor once and to say I was disappointed when he declined my request that he go with me to the rheumy when I was to obtain my test results, is a major understatement.

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    I am so overwhelmed to have replies to my situation so quickly. I had hoped to get advise and suggestions from people that know how truly devastating lupus can be. So many friends have told me just to cut off all communications with him and get on with a normal life. I just couldn't see how that would be of any help! I want to be there for my SO in whatever way that he will allow me.

    He told me last night that he has started taking methotextrate. I think this is for his diagnosis of retroperitoneal fibrosis. Is this disease brought on by the lupus?

    I'm wondering if he possibly needs to be on an anti depressant? I worry about him just giving up.

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    Wow...very tough situation...I totally agree with Rob..and I too retreat when something is wrong. I am sure deep down inside he does want you there and you are a good person for doing so. Watching someone suffer is not an easy task. He probably does want you to get on with your life, and you can, but that doesn't mean you have to turn your back on him...I am sure he would love the friendship/companionship.Best of luck to you in a most difficult situation.
    Andrea

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    Well, right or wrong, I called my SO this morning to tell him Happy Thanksgiving and to see how he was doing since he started his new medication. He's trying to spend time with his 8 yr old grand daughter and this evening with his 11 yr old son that he hasn't seen very much over the last few months. He seemed happy to hear from me and we talked about his new medication and I told him about some positive results that I had read about online. I also told him about this web site and that I had met some friends that were trying to help me understand the reason for him wanting to be alone. I told that I would always be here for him and I hoped that I could share some time with him soon. He said that he was hoping that the new med would help relieve some of his pain and that we would figure out something as far as spending some time together soon. Of course, when I got off the phone I broke down and cried. I, so much, want to be a part of his life. I would do anything to help make him feel better.

    So now I will sit and wait and stare at my phone hoping for a call.................from him.

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    I think most of us would want a caring person to understand what we go through and be willing to be buy our side. But some do not realize how we struggle with these dieases and how we feel because a lot is not seen outwardly. Please just hang in there and let him know that you care and am still are there. I really do not like being onmmethotrexate and having the dosage increased but i have to trust my doctor and hope that soon it will relieve some of the pain. Love and prayers Bonita

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    Quote Originally Posted by CAR0072 View Post
    Been dating/living with my significant other for about 8 months. We were planning future things together. Trips, grandkids, projects. He was diagnosed with lupus about 1 1/2 years ago and had a flare up about 4 months ago that has not gotten any better. Very difficult time controlling the pain due to his profession - cannot take narcotics. Just a couple of days ago he received information from his doctor that he has two other very rare diseases. Poor prognosis. I asked if I could do anything for him and his reply was "I need to be alone. I have to deal with these illnesses and figure out what is going on." I respected his wishes and left. I did not want to. I would have been willing to stay and help him thru whatever happened and I told him that.
    I just wondered if this is a common reaction. Do I keep in touch with him or wait for him to contact me.
    Hi CAR0072,

    I was diagnosed with SLE in 04, and then MS last year. From a man's point of view, I can understand his reaction. But, from a man's point of view, and from a person who also has two autoimmune illnesses, I'll tell you that I would want to have your support, and companionship.

    Without knowing the details, I can only surmise that he thought Lupus was no longer a problem, and did not expect it to come back anytime soon, or in any significant way that would affect his life, and by extension, your life too. Lupus is very unpredictable. And then, he has more health problems on top of that.

    After reading your post, and comparing it to what I think, and know, my advice would be to keep in touch with him, and do not simply wait for him to contact you. If I were in his shoes, I could easily tell a woman I care about to leave me alone and let me deal with it, while I actually wished that she could be there for me. I guess I'm saying that, in the same situation, I would want someone there who cares and loves me, even if I could not say it. Sometimes it's hard for us guys to ask for help, but that does not mean that we do not want, or need it.

    Rob
    Last edited by rob; 11-24-2009 at 09:22 PM.

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    I would send a card, still keep in touch. I would also say I need space but wouldn't mean it. A good shoulder to cry on is always great.

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