View Full Version : ? Urgently need advice

04-05-2009, 05:59 AM
Along with my own nervousness about SLE I also have a boyfriend whom I think just doesnt get it at all. He doesnt understand that somedays I just dont feel good and often looks at me like . . . What the H***?! I dont know how to make him understand that there are somedays that I just cannot get out of bed!! Anyone with advice it would be greatly appreciated. :unsure:

sick n tired
04-05-2009, 07:48 AM
Hey Froggal,

It appears that your boyfriend doesn't understand your illness...for a while that is what I got from my husband...he would say or have the look like what is wrong with you? You don't look ill.....perhaps he should go with you to a doctor's appt. It does take time..My hubby wanted to pretend it was all in my head, so he didn't have to think I could be seriously ill...he as told me that lately.

04-05-2009, 08:33 AM
There is a very popular document that has been suggested for friends and family on this forum for quite some time. It is called "The Spoon Theory" and it gives the reader a pretty good understanding of what we deal with, on a daily basis, as Lupus patients. It was once very easy to copy this document, but because of its popularity, they've now made it an adobe document (read only) and placed a price on it for sale:skeptical:
At any rate, here is the website: www.butyoudontlooksick.com

Let your boyfriend read this and hopefully it will help him gain a better understanding of your Lupus.

Peace and Blessings

04-05-2009, 08:36 AM
hi froggal,

when i became so ill in 1996, it cost me my marriage in 2006. i used to be so vibrant, active, lifted weights, hiked, camped, drove my little mustang in drag races (legal ones of course). etc...

by 2006, i was so different that it caused extreme problems in my marriage, and my husband filed for divorce in oct. 2006. since then, he has learned how debilitating my disease is, has re-entered my life with sincere remorse, and has stood by my side every since. I will add, he is 10 younger than me, and still has a full life....he has CHOSEN to be with me through this nasty life that i have been handed even though i strongly encouraged him to go on. Jim and i are now "bes friends" without the legality of marriage. I want him to be able to walk whenever he just can't walk with me anymore....i truly believe that the day will come. for now, when i feel like it, we take gentle hikes, and rides in the country.

so, there is hope. however, i know your pain....i tried so very hard to stay "like i used to be" but, eventually, the lupus just would not allow me to pretend any more. i endured his disgusted glares, his hurtful comments, his threats of leaving me, etc. it was "hell in life". My advice to you, that i gained from my experience, is to give him responsibility for his actions. If he wants to cop an attitude at you because you can't get out of bed, then that is his choice....not your fault or responsibility.

once i accepted reality, let Jim deal with his issues, (and this is the same for all family and friends) then i was able to get the peaceful rest that enabled me to feel better and actually have a good day. this "letting go" removed an incredible amount of stress from my shoulders.

i agree with sick n tired, you need to talk, let him read some of the symptoms for himself, offer to let him accompany you to the dr., and maybe even read some of the posts on this forum. My girls did this, it terribly upset them, but now they have a better understanding of what is going on, and they know that there are times when there is nothing that they can do to help me.

there is nothing that your husband can do to "fix this", which is a natural reaction from anyone who cares about us, especially a husband. often when they can't fix what is wrong, then their frustration leads to mistreating those close to them....not an excuse, but it happens so often.

this is a time in your life where you must do what is right for your disease. it is a reality, it is a life-altering and controlling disease, and all you can do is reduce the symptoms by rest, meds, and less stress.

whereas SLE is difficult because "we don't look sick", however, on good days i enjoy going out and not getting the "what's wrong with her stares."

i apologize for this being so long, but i really want to help you through this, because i KNOW how harmful this is on your efforts to manage your life with SLE

please know that we are always here and help each other on a daily basis.

04-06-2009, 12:48 AM
Thank you all for your encouraging words. I cant believe that I am meeting and talking to people that understand! I love my husband, but he is not very supportive and is the type of person that doesnt think that being sick should hold a person back from anything. He spent alot of years in the Marine Corps and I think that it really made him insensitive and robbed him of any compassion that he ever possesed! I do not want him to feel sorry for me, but I do want him to understand that I am not the same person that I used to be. I am getting ready to go thru surgery to hopefully improve my lupus and I still dont think that he gets the fact that I need his support. Thanks for all your suggestions, and also your personal feelings. . . you do not know how much it is appreciated!!

04-06-2009, 05:25 AM
Hi froggal,

Phyllis brought up a very important point that I can verify from a man's point of view. We are fixers, and as such, we don't react well when confronted with a wife/girlfriend who is sick, and we are unable to be the fixer. We feel protective of the lady in our life and it can feel like we've failed in that task. And, like Phyllis said, it's no excuse for bad behaviour, but it happens unfortunately.

I agree with the other advice too. Your husband needs to learn about your disease. He needs to learn to aim his contempt at the disease, not you. One thing you could say to him, is that his attitude causes terrible stress, which can cause you to go into a flare, and become even more ill. He can't fix you, but he can can help protect you by not doing things that will just aggravate your symptoms. I would tell him that. If he can see Lupus as the enemy, and learn that there are things he can do that will help keep that enemy at bay, then he'll be well on his way to understanding what is happening to you. Tell him you need him on your side. Anyway, those are some of my ideas on the situation.


04-06-2009, 07:39 AM
When Lisa and I first got together I didn't know she has asthma. When she had an attack I got mad because I couldn't do anything to help her. This was the wrong thing for me to do an I since learned that.

Us men look at thing with logic not emotion. Knowing this I took the logic end of me then figured out what would cause an attack. We eliminated what every it was from our lives. We moved to different parts of the country where she was better.

My point is that when your husband learns what Lupus is and does to you he will do everything in his power to help you. Your husband understands the enemy and once he knows that Lupus is your enemy he will fight to keep you healthy.

04-06-2009, 07:57 AM
you should have him go with you to docs office so he can hear first hand about what is going on with you and what will be going on with you.
my sickness broke up my marriage of 20years cause he just didn't get it or wanted to go with me to the doctors or read the info i gave him. don't let that happen to you if you are seriousl about him and he the same, make sure he has all the information you do. the more people understand about lupus the easier you life will be. and you should tell your family members and friends also. the more support you have the better you will feel and that helps out alot.

04-06-2009, 07:59 AM
There's definitely a learning curve of acceptance and support for a loved one with lupus.

I have been very frustrated with DH, who pretends this isn't happening. Finally, when I was at the absolute end of my rope, he told me that he doesn't know what to do since he can't fix me.

As long as I pretend that everything's fine, we are fine. Otherwise, he gets the "woe is me, I can't fix you" syndrome. It drives me nuts! So I don't have to deal with that, I just go ahead-living in my make believe world that I am "fine" and all is right. Perhaps that's why I vacilate between acceptance and denial as well?

Thank God for this Forum, otherwise I'd be institutionalized!

04-06-2009, 11:49 AM
you need to really just sit down and talk to him about the disease and let him know how it makes you feel. also tell him, that for your own health, its necessary to get proper rest, and your going to not feel up to doing some things at times. you need to make sure he understands what your going through, otherwise it could cause problems in your relationship.
also have him research SLE a little...soo he can have information on his own about it too.
im sure though he'll understand : ) just be positive!

04-06-2009, 04:01 PM
Hi Froggal! So sorry for what you're going through. You got some reallly good advice from some of the many great people on this site. I too believe you should HAVE him go to your drs. appts. Its from the horses mouth and hopefully he wont deny that. My husband became very upset because he saw me in turmoil and pain and could do nothing. It hurt him to see me deteriorating right before him. Like Phyllis, i have always been a very active get things done kind of person. He saw this slowly go away, he KNEW something WAS wrong because he KNOWS ME. He said what can i DO, i feel so helpless, I told him im very overwhelmed by my symptoms and finding new drs. that it would be great if he could help in the search and go with me to appts, not only for support but for an extra voice and an extra pair of ears. Hes there always at every turn i take, he even found a local support group and goes to it with me. He feels better for this and it has helped me with this terrible illness. I wish the BEST for you and i hope you can get him to a point of understanding. Just remember, he wants to fell NEEDED and WANTED through this. GOOD LUCK:fingersx:

04-06-2009, 04:18 PM
Thank you. He has been to to doctor with me. In his mind this is something that I should be able to "shake off" and just go on with life. I am such a strong, independant person that I think that he thinks it is something that I am just blowing out of proportion. I am getting ready to have a surgery at the end of the month and the surgeon has even talked to him. I often wonder if denial is sometimes more of an issue for those that have to deal with the lupus patient than the patient themselves? Maybe I am crazy . . . Who knows!!??

04-06-2009, 04:30 PM
Hopefully its just time that he needs to come around. He also might be so scared for you ( another emotion men dont deal with well) that hes acting out in this way. This is a life-altering disease for you AND the people who love you. You will CHANGE in many ways and it will be hard for YOU and THEM as well. Its definately an adjustment that will take time for everyone. You will truely find out who really CARES for you,friends and family as well. When people are showing anger and/or denial its usually because they are SCARED. He loves you and hes scared, just like you. Im so sorry,i wish i could push through this fresh part of it all for you. Its a herdle, but it will be gotten over. HUGSXXXXXXXXXXX:hug:

04-06-2009, 05:29 PM
hi froggal,

as you can tell, we all wish that we could make this additional stress go away, but no one has the answers....time is what will answer this question.

I am reading a really good book (it is a thread in Laurie's Lounge) and the author talks about the extremely different ways people initially deal with a diagnosis of a chronic illness. the end result is that no matter how a person initially deals, we all have to eventually come around to the acceptance point....time is what will get you and your support team to acceptance.

i am pulling for you and your husband,

i am so glad you found us,