View Full Version : No support from hubby

10-31-2005, 03:46 PM
I am having a bad flare - first one in a year and a half - and lack of support from my husband makes things harder to handle. One minute he's supportive but then a minute later acts like he doesn't understand why I've spent two weeks on the couch. It's as though he thinks I can control what I'm going through. Am going to the rheumy in a week and hope she'll give me something. Help! I hate this. Thanks for any suggestions.

10-31-2005, 05:28 PM
:( So sorry to hear he's being a putz! It is probably hard for him to understand, you've been doing good for quite a while, and all the sudden you're having problems.

Have you ever shared the Spoon Theory with him? www.butyoudontlooksick.com. It is about a young college student, but really says a lot. Also, I think it was Catlady or SoleSinger who posted a writing a bit ago about how it is for us - look for a heading something like "You have to read this - it is just how we feel."

All I can suggest other than that is to talk honestly and without anger. He doesn't understand, can anyone truly understand a person's pain when they haven't experienced it directly? Has he ever had a bad flu? Could you gently remind him of how that was for him?

When he is being supportive, thank him, tell him how grateful you are and how loved it makes you feel. Support his supportiveness, I guess you could say.

Sending many gentle hugs your way dear, you know you have all of our support, we all understand. May your flare end quickly!

10-31-2005, 06:01 PM
I think spouses go through flares of dealing with Lupus, kind of like we go through the actual flares.

I'll be thinking of you,

10-31-2005, 07:33 PM
Thanks for your messages - the suggestions about giving him the site to read, as well as how to talk to him bring me back to earth. I have been feeling sorry for myself - no one to talk to - and you've reminded me what I need to do. This site is going to be helpful for me. Thanks for the prompt replies.

11-05-2005, 11:24 PM
I'm so sorry to hear your husband doesn't always support you during your flare. Fortunately my husband has diabetes so he understands what it means to have a chronic disease. I posted an article that was sent to me by Solesinger a few weeks ago and says exactly what lupus patients feel like. Our problem is, our pain and fatigue isn't always evident so others don't understand what we're going through and take it as laziness. Also it's hard for partners/spouses sometimes because they are scared they will lose you and don't always know how to deal with these feelings. Is there a local lupus support group you can both attend? My husband urged me to call one of our hospitals to see if there is a local group that we can attend meetings together. I'll see if I can find that article again to send to you. Keep your chin up...your flare will eventually pass.

11-05-2005, 11:30 PM
Here's that article I found a few weeks ago- hope this helps

A letter to be shared with friends and family
by Theresa Stoops in Florida

My pain - My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness - Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.

My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness - Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,

I have shared these thoughts with many "Lupies", as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine -- Do not judge them as you may Not know their Inner pain.

==== And always remember I LOVE YOU! ====

11-14-2005, 11:48 PM
Catlady, the letter you posted was absolutely wonderful, and said what I have been feeling but was not able to verbalize. Thank you for sending your love. :wink: Know that you are appreciated.

11-21-2005, 04:22 PM
Thank you, Cat Lady . . . you said what I have been feeling for so long. I am so glad that I found you fellow "lupies," now I really DO know that I am not alone!

Thank you and everyone else who is going through this nightmare and cares enough to share. May God bless all of you!