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Life With Lupus

Relationships


#1

Does anyone have any advice on how to help my fiance cope with my illness, lupus. I never have enough energy to do much except exist. And I know it gets to him, but I can't get him to understand that this is the way it is. so it puts a huge strain on our relationship. I get it, I would probably be the same way. Maybe i just wish he could wear the rose-colored-lupus glasses, or walk in my the lupus shoes for one day, maybe more! What do other patients do to keep the relationship together.


#2

Hello Cannabearrx,

When i took ill my hubby ste did'nt think it was an important issue until after several appointments and i told him what had happened and what was said and after that he started attending them and he's looked up lupus like mad and read about it plus when i do see specialists now he lets them ask me questions then he starts...it's like he needs to get to the bottom before he's satisfied.

You need to try and get your fiance to attend some appointments with you so he realises what's happening....otherwise he may just carry on ignoring the fact, if he can see you ill then i can't understand what's going through his head if he loves you.

Wishing you all the best Love Terri xxx


#3

Hi Cannabearrx....

Your topic is so hard, I cannot even think how can you feel with that. I've always said that we cannot have money, health, home or whatever, but a life without love is impossible.

But as humans, we try to keep away from the pain and try to avoid it. A lot of people with Lupus have to cope with their illness alone because their relatives, partners or mates don't want to get involved in such a hard disease, because they suffer too, not with your pain or disease, buth with the sorrow and impotence to cannot do anything for your relief.

My sister has Lupus, she is 19yo and I left all my "old life" to be with her and my mother, coping her and being with her at home and the hospital.

You cannot force your fiance to act as you wish and cope with your illness, that must to born from his heart and love.

BUT, what you can do is to teach him about Lupus and open his eyes to your reality. A good idea is what Terri has told you... get your fiance to attend some appointments with you. He can learn a lot from your doctor and understand how Lupus affects you.

My advice for you is try to meet another Lupies with him so he can watch how other couples or families cope with Lupus and then, he might understand your needs and keep your relationship together.

Cheers and good luck with this!


#4

I am very sorry to hear that it is hard for the both of you. You know he can join this group and talk to us about things. Maybe that will let him understand a few things better.

I was in a relationship with a guy for 8 month. To me we seemed perfectly fine. He and I got together right after I got out of the hospital with my diagnoses. He had knowen me for 6 month befor that. He saw me when I was really bad and he knew what lupus is and does. His father even took him to the side and talked to him about it... One day I happened to be on my way to the ER he called me and told me he could not do this any longer. I am to sick for him to be able to deal with it.

The worst part of this was that I hid most of my pain and problem days from him. I would just tell him I was busy or text him I was fine when I really wasn't. He didnt know how bad I really was... So I cant really help you with this one. I am really sorry


#5

This is so hard, and kind of puts me on the otherside i guess, i am Jons wife Jude and so i live with my husband and his lupus, too say its hard for us who love someone with this disease is an understatement but i think it is just hard being a carer fullstop. I think the others here are right, you must try to help him understand more about lupus. And most of all you must let him know how much his support means to you. Stay positive even on the really bad days and when you feel like just giving up dont because he also needs to know that whatever he is doing to support you on the bad days is helping, other wise he will begin to feel there is no point standing with you in this because he cannot help and that is truly hard for anyone...... it is very much a two way thing he is there for you and needs to know that his support is what gets you thru...... also see if he would come online and maybe as carers we can chat.

much love and hugs Jude (jons wife) New Zealand


#6

Hello Cannabearrx,

Your fiance may be in love with you loads but with alot of people they can't face illness and don't like seeing those next to them ill and your partner may be one of those people.

It's such a same when a partner or family are like this because to me if anything happened to them, then they'd have to face it full on.

Hugs Terri xxx


#7

We are alone. I was alone for eight years. Until I found this group. I just would like to sit face to face and talk with those who deal with this. Hang out, take a walk, have lunch or dinner. Or the occasional cocktail!

pinkycito said:

Hi Cannabearrx....

Your topic is so hard, I cannot even think how can you feel with that. I've always said that we cannot have money, health, home or whatever, but a life without love is impossible.

But as humans, we try to keep away from the pain and try to avoid it. A lot of people with Lupus have to cope with their illness alone because their relatives, partners or mates don't want to get involved in such a hard disease, because they suffer too, not with your pain or disease, buth with the sorrow and impotence to cannot do anything for your relief.

My sister has Lupus, she is 19yo and I left all my "old life" to be with her and my mother, coping her and being with her at home and the hospital.

You cannot force your fiance to act as you wish and cope with your illness, that must to born from his heart and love.

BUT, what you can do is to teach him about Lupus and open his eyes to your reality. A good idea is what Terri has told you... get your fiance to attend some appointments with you. He can learn a lot from your doctor and understand how Lupus affects you.

My advice for you is try to meet another Lupies with him so he can watch how other couples or families cope with Lupus and then, he might understand your needs and keep your relationship together.

Cheers and good luck with this!


#8

Actually Jean,

That's a lovely comment you have made especially for meeting up with people by you or the same area but another country as myself it's a shame....so my 2nd family is through the site and in my eyes alot better than nothing at all, how you was for years alone until you joined.

Love Terri xxx


#9

I’m sure it’s difficult being in a relationship and dealing with lupus! That is what I’m scared about. I’m 23 & single. I don’t even wanna get involved with anyone, because I feel like all I would do is burden them. And thats the last thing I wanna do. It’s hard enough with family! If u have any tips please let me know. And I wish u the best of luck!


#10

Hello Tiffany, my daughter who is the same age as you was also diagnosed with Lupus a while back. We were not too happy. I was upset. She thought I mad at her. I am mad she has this. I have dealt with it probably all my life and I dont want anyone I love to have this. I barely know how to care for myself and feel awful that I cant give her the strength she needs. I am going to tell her about this site and she can join in on the discussions. It is hard with family too. They dont see the illness so they cant understand it. Stay strong as JC says and rest and eat well. Its interesting when I was your age that I used to take naps before I went out with my friends. Didnt understand why and they used to laugh at me, but now we all know why.


#11

Thank you Terri...

Tez_20 said:

Actually Jean,

That's a lovely comment you have made especially for meeting up with people by you or the same area but another country as myself it's a shame....so my 2nd family is through the site and in my eyes alot better than nothing at all, how you was for years alone until you joined.

Love Terri xxx


#12

Tiffany,

You should'nt look at life like that your only young...i felt a burden to my parents from 18 to 29 when i finally met my first hubby and that was one hell of a major mistake in life...he could'nt except my seizure's so the marraige did'nt last long, so when the divorce came through, 5mths later i met ste never told him at first what was the matter with me and when i finally did, he was'nt bothered and we've been together 12yrs.

Never look on the negative side as the saying here is "There's someone for everybody"....you day will come. xxx

Tiffany89 said:

I'm sure it's difficult being in a relationship and dealing with lupus! That is what I'm scared about. I'm 23 & single. I don't even wanna get involved with anyone, because I feel like all I would do is burden them. And thats the last thing I wanna do. It's hard enough with family! If u have any tips please let me know. And I wish u the best of luck!

#13

Hi Cannabearrx,

I can relate to your problems. I’ve dealt with this in prior relationships and also my very best friend had Lupus and her boyfriend thought she exaggerated her symptoms. Anyway try to see if your fiance will go with you to one of your appts. Have your dr. explain to him what you are dealing with and what to expect. Sometimes printing out literature can also help. My fiance is great. He knows that I am ill and that I will never be cured. He used to deal with it by secluding himself away from me He would go off into his office and play video games/fb games whatever just to not deal with it. But he’s gotten better . Try to have him share his feelings with you. If he feels uncomfortable maybe have him write them down. Is he afraid? Jack’s worst fear is that he can’t fix me…he says He’s the man and supposed to make everything right and it destroys him that he can’t fix me…I just tell him to love me and be there for me…that’s all we can ask. I know how you feel about wishing they could walk 1 day in your shoes…Just be honest. with each other :wink:


#14

Turbos mom, I couldn't of said it better. My husband and I have been together for 21.5 years. He knew going into the relationship that I had major cardiac issues. In the past 5 years, my health has declined. My heart is weakening, I was diagnosis with Crohn's and Lupus, in the last 2 years. The medicines make the symptoms of the other flare. Even though he knows I have these problems, he has told me he thinks I use them to get out of things. I wish it was just imaginary. Since he has been faced with the fact that I am no longer the person I use to be, it has made him VERY upset. I also hide most things from him, but promised him if I feel it's major, I will tell him.

You have to understand that it will take him time to adjust to the current you, just as I am sure it took you time to adjust to. Two years and I am still finding my boundaries, so it's gonna take my hubby a while. He has to get lost in his video and computer games, so he can have a chance not to think about it. Let him, do what he needs to cope.

I have asked him to just love me thru it.


#15

Cannabearrx I can relate with your situation. I was married when I was diagnosed and all the symptoms and health issues before it was given a name. I was married 5 years. My husband began to have affairs, ne never supported me and never went to doctor appt. with me. When I was transported by ambulance from work to the hospital a cowork can and sat with me. I called my husband because they where finnaly releasing me. My co-worker had to leave so I called to ask him to pick me up. He asked if there was anyone that could pick me up because he was working. I always felt lonley. I had friends and my daughters to come by and help me out. I live in a different state than my family. I spent a year in my marriage feeling very lonely and afraid to leave because of finatual reason. I had a great friend that I would talk to on the phone, he would encourage m, he enven did research on Lupus so he could understand what I was going through. I finally left my husband moved in on my own with my daughter and grandson. I finally met my friend I had been talking to and he is soooo suportive of me. We started dating and he has been here very since taking care of me, making sure I rest when I need to and he cooks healthy meals for me. I say all this to say be open the discuss your illness encourage him to do research and as other have said make sure he goes to doctor appts. I think most people ge scared because the don't really know much about Lupus and they are afraid that Lupus is a death sentence.


#16

I wish that I could tell you there is a magic answer to your issue, but I cant. Many men run away from this. Mine did too. When I asked him why he was ignoring me, instead of saying Im scared, he said well we just dont get along anymore. We split up and I was frightened. They rug was pulled out from under my feet. I had just recovered from a cardiac issue, of which he did not come to the hospital, he said he was busy and had to work. I hated him after that. I gave up my whole life to be a good wife and mother and the minute I got sick, he split. When I began to regain my strength, he decided he wanted to come back. I let him, with rules. It hasnt been easy, but I try.


#17

Ladies this is all so common. Cannabearrx don’t give up. Men handle things differently than women we have that maternal instinct. Men do not deal with things the way we do. My life is basically living out of my house lol. But then again I enjoy that, I am more of a homebody and so is Jack. It’s sad that we all can’t have the support we want or need. I know myself personally our “sex life” has almost stopped. Due to my fatigue, medications, not feeling attractive you name it… and yes it worries me greatly that he will go find it somewhere else.

JeanJeanne & Purplefav so sorry to hear of your splits (but JeanJeanne I am glad you set some rules sometimes that is what we need to do to show just because we are sick doesn’t mean you can walk all over us)

Hang in there


#18

My advice is to be honest- up front- speak from your heart-don't hide anything. He must love you - Lupus and all. If you pretend - then you will have to keep that up though out your entire marraige. Be sure you both know if you can do it TOGETHER- before walking down the isle. You do no favor to him or yourself if you don't acknolwlege that Lupus will make your life a little more challenging.

I didn't get that chance- my Lupus came years into my marriage and my husband does not love the "Lupus me". He knew me as the strong- outgoing- never say no to any challenge- girl I used to be. The old me and the new me do not come together in his mind. He thinks I just need to be my old self. He will not accept the fact that drugs can never restore me to my formor glory. We may not make it and it totally breaks my heart.

Please, be true to yourself. Be sure to surround yourself with people who will love you always. In sickness and in health.

Cassie


#19


I really like what she said! its makes sooooo much sence
JON said:

This is so hard, and kind of puts me on the otherside i guess, i am Jons wife Jude and so i live with my husband and his lupus, too say its hard for us who love someone with this disease is an understatement but i think it is just hard being a carer fullstop. I think the others here are right, you must try to help him understand more about lupus. And most of all you must let him know how much his support means to you. Stay positive even on the really bad days and when you feel like just giving up dont because he also needs to know that whatever he is doing to support you on the bad days is helping, other wise he will begin to feel there is no point standing with you in this because he cannot help and that is truly hard for anyone...... it is very much a two way thing he is there for you and needs to know that his support is what gets you thru...... also see if he would come online and maybe as carers we can chat.

much love and hugs Jude (jons wife) New Zealand


#20

Turbos Mom...I am just now seeing your comment. Well, the rules just about pushed him over the edge. He has decided to work more and to me spend less time at home. I suggested he take this overtime and look for an apartment. I would love to have a life of my own. Married woman out and about, as I have learned, are not truly accepted in social situations. They are always asked where is your husband. Why isnt he with you. The questions are annoying. He says I can go out and do what I want, but he is a man and knows that doesnt work for women. I am taking the summer off from work and I have some serious decisions that I need to make. I want to be happy too...

turbos mom said:

Ladies this is all so common. Cannabearrx don't give up. Men handle things differently than women we have that maternal instinct. Men do not deal with things the way we do. My life is basically living out of my house lol. But then again I enjoy that, I am more of a homebody and so is Jack. It's sad that we all can't have the support we want or need. I know myself personally our "sex life" has almost stopped. Due to my fatigue, medications, not feeling attractive you name it... and yes it worries me greatly that he will go find it somewhere else.

JeanJeanne & Purplefav so sorry to hear of your splits (but JeanJeanne I am glad you set some rules sometimes that is what we need to do to show just because we are sick doesn't mean you can walk all over us)

Hang in there