HELP HUSBAND UNDERSTAND MY PAIN

(((( Painful )))) I am sorry you are going through this. It is very frustrating to have a diseased like lupus, fibro, etc and have to deal with people that do not understand. It is very hard for healthy people to understand what we go through everyday. It's hard for the them to wrap their head around the debilitating fatigue we experience, they only understand what they "feel" like when they are "tired". That is why I think it's so important to have some sort of support group, whether it be online like this wonder message board or a local support group meeting in your area.

I would also suggest if possible that your husband go with you on your next doctor appt. Maybe the doctor can explain the disease to him and make him understand the pain you deal with each day.

I pray this helps you. Please keep us updated on how you are doing and feel free to ask more questions. Take care and God Bless

I wonder if perhaps he might not need to read about how others with your problems feel. If you read my dx list you will see I am lacking only OA. I am on disability (SSI) and am only 31. I take more pills than my great grandparents used to combined. I can call and tell my rheumy the pain is worse and she will call in narcotic pain pills because she knows the pain I live with daily is unmanagable despite all the meds I take which you will also see the majority of listed in my signature though a few aren't listed down there.

I will explain how today went so maybe your husband will understand. Yesterday was holloween and I have 3 kids. I went trick or treating with them. We did trunk or treat at 2 churches and went up and down both sides of 2 blocks. I also had to ride 4 hours in the car yesterday and we had a busy morning because so much had to be done in one day. We got home close to midnight. I slept until 1:30 this afternoon but by 6 tonight I fell asleep again and only woke up 10 minutes ago. I will go to sleep again around 11 and sleep until noon tomorrow. That is what it will take for me to recover from 1 day of acting like I am normal. I suffer pain so bad that I wake up crying because it hurts so much. I do not think anyone can fully understand but I told my husband that he should recall how he felt when he had his kidney stone and imagine feeling that way 24/7 365 because that was the closest he could possibly come to feeling what I feel daily. I say that because natural labor was easier than the daily living with how I feel. Considering the fact I am younger than you are and am completely disabled by this I cannot imagine working and doing things like camping. I am sorry, but camping sounds like torture given the fact you suffer the same conditions I do.

If that paragraph I just wrote doesn't help him understand then it is time for him to meet your doctor. Also maybe he needs to have how dangerous these diseases can be and the kind of damage they do made perfectly clear.

He needs to know untreated lupus kills and even treated lupus can kill depending on what organs are involved. Untreated RA will warp your joints until they are immoble, fibromyalgia makes being hugged hurt so much you shy away from affection of any kind. I can say my husband understands but he doesn't like it because he can't fix it and he has told me that repeatedly. My husband says it is like trying to fight someone he can't see who is made of smoke and mirrors and who could take the person he loves most in the world if he doesn't fight. It made it very hard for him to accept what is wrong with me but once he accepted it he educated himself using things like THE LUPUS BOOK by Dr Wallace and other reliable sources so he could be as much help as possible.

If your husband insists on you working until retirement then there is a very good chance you will be completely unable to enjoy retirement when it finally comes. He needs to consider that fact.

I understand your problem..
My husband is very much like yours...
I can't tell you the tears I've shed...and the hurt I've felt...
You have delt with the problem for a long time... I filed for Disability and was denied twice.. I didn't want to pursue it further...
I look healthy as a horse but my body is full of pain... but.... I have to say that at the moment, I'm doing much better....

I just recently started therapy to talk about my pain and feelings. It has helped me because men deal with things differently than women do. I understand him more. I think my hubby understands some of the time-but I don't need him to understand everything. It can be hard to talk about with him. I think he feels alot of anger and sadness when I'm in pain, and he's just not really good at expressing those feelings -unless he's intoxicated:) I've seen alot of good suggestions listed here. Definetly take him to your dr. appts if he hasn't been going already. It has helped my hubby to understand and also enable him to ask questions that he may be curious about. Two heads are better than one.