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I have had enough!

376 Views 11 Replies 8 Participants Last post by  onetay
Hi all
Sorry but this going to be a rant.:mad: Had major argument with my hubby last night as he thinks i should stay away from websites about Lupus because i havnt been diagnosed yet. I said it helps me be a bit less scared and that i know they might turn around and say its not Lupus at all but something else. As Lupus is the only thing that has been mentioned (RF was elliminated), i wanted to find out as much as could . Do partners tend to behave this way he is usualy understanding but now he seems to be in more denial than i am . This row has made me feel really bad and now my chest hurts again, i dont think i can cope if he keeps on at me for this , is this normal .:sad:
sorry to rant he is alovely hubby really and dont know where this has come from.
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Hi Angie,
I am sorry that you had a big row about sle and this board. Could you be talking about it more than he wants to hear? Is he prone to denial about problems? SLE with all its negative behaviors can cause loved ones to fear it horribly. The one good thing to know is that now our survival rate of 5 years is around 98%. Given that in 1960 the 5 year survival rate was about 30%.....the odds are stacked in our favor. Treatments and management of the disease are so improved in the last couple decades, than has ever been for us, that we are living better and longer.

Perhaps if he understood that until you are diagnosed it is hard to get proper treatment and you are medically mismanaged and untreated. Getting proper treatment means that you will have better care and able to get back into a healthier you all that faster.

Good luck,
Hello Angie, My Husband is usually okay but when he first heard it could be Lupus, his first words were "That's fatal"! He also couldn't understand me going on a Message Board, but I did , and I needed support from people who had been through it. They helped me to get to Dr. D'Cruz, even giving me the little bits of information like Tube stops, level access etc. which healthy people would not always think of. One even told me of a little park the kids could play in while they waited.
There is a lack of GOOD ACCURATE information about Lupus even among Doctors and I have never regretted learning all I could. Obviously, you may like to be a little bit tactful and perhaps go online when Hubby is happily doing something himelf.
My Husband's other annoying form of denial was to constantly dream about undiscovered plants in the Rainforest which were going to immediately cure me.
I think many of us have found that Husbands react differently to us over this.
Will be thinking of you,
x Lola
thanx guys.
my dr rang me today and said test results are back and he needs to see me asap. i will be going on tuesday as i am doing 2 nights and cant go til then. i will let you know what happens .
thanx again sooo glad i found this place.
sorry i meant wednesday lol
Hi Angie,

I think that partners can sometimes react in this way through fear and concern for us. On the one hand, he may be quite afraid of lupus. Let's face it, so few people know much about it.

On the note about survival, the vast majority of people with lupus now stand as much chance of living a normal life span as the rest of the population. Some would argue more as we do learn to look after ourselves more, pace ourselves better and also possibly spend less time on busy motorways (I do anyway :lol:).

I remember that, when I first came here it caused by husband some concern. Thankfully he was tactful about it (I have a redhead's bad temper - that may be why!). He was concerned that I was getting myself too involved with people that were ill and spending time in a depressing environment. I mean, let's look at it from the outside - what else could a site about lupus be about other than moaning and groaning with a good dose of general depression? How wrong people can be!

He actually kept silent about this for a while but brought it up when a close friend I made here was extremely ill. She could have died (not from lupus) and he was concerned about the effect that would have on me. Of course, it could have a bad effect if ever that were to happen but I tend to take things from day to day and although I am very close to that friend and although I would be extremely sad if anything happened to her, I am mainly very happy and priviledged to know such a person and if someone told me I could only know her for a short time then I'd accept that just for that priviledge. Having that friendship has been so so important to me and got me through many a bad day and many a battle.

It's silly really as any friend, next door neighbour, relative (including him)...could, potentially have an accident and die but that's how he reacted.

Partners need a lot of time to get used to someone possibly being diagnosed with a chronic illness. It is as much, perhaps more, of a shock to them as it is to us. We do, afterall, feel ill for ages. In some ways we welcome and crave diagnosis. For them, it is far easier to put their heads in the sand.

Give him time, be gentle and, as someone else suggested, maybe talk about it a bit less (that's why here is so great, it unburdens relatives).

love and hugs :hug:
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P.S. My husband no longer has any concerns of that sort and finds that that friend is a truly wonderful person.

He is also a very very supportive partner who never judges or criticises and takes on so so much so that life is fun and painfree.

Hello Angie

Good about the test results and seeing the doctor.
About your husband's attitude, all I would say is that the man has spoken about his needs and concerns even if he did express them in a belligerent manner. By now you probably know as much as you need to know at this stage about lupus. If you do have lupus or similar you need him on your side!
Also you will have to start learning to live with it yourself and as a couple. It takes time for family to become educated and understand the needs of their sick relative, sometimes a very long time as they adapt to the whole idea.
Men typically get angry when they are frightened and can't express their emotions - maybe women do too!, so tempers are running high and nerves are fraught.
So graciously give him your time and attention right now. It costs you nothing but will make a big difference to the relationship.
By the way it seems you have a very demanding job and sick people need as much rest as they can get. It's very easy to spend hours on line without getting much benefit which could be better spent sleeping and recovering one's strength for the next round of challenges.

Take good care of yourself ! Good Luck on Wednesday- I hope you start getting some answers.

Bye for now
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Dear Angie, It sounds like something may be moving for you with the blood tests etc. Best of Luck for Wednesday. Try not to worry. We will be eager to hear how it goes.
x Lola
Hi Angie

I wanted to wish you well for Wednesday and hope that you get some answers.

My husband found it very difficult to deal with me becoming ill, he was frustated because he could do nothing about it, and he found that hard. Also he had fear, men dont always have such a good support network as women.

Maybe he could come with you to a doctors appt, so he can ask if he has any questiions. Knowledge is power!!

Good luck for Wednesday Angie :)

Men like to 'fix'things and when they can't they become very unsettled and frustrated. Do your best to keep the lines of communication open but also make sure you have time with each other that you don't talk about your illness and just go and do stuff that couples do. It will all work out ok, it's not uncommon for partners to react like this, but over time you will both learn to adjust and sort things out between you.

I agree with sally and would like to add that have you showed him the site and offered to have him be active with you here. Sometimes family and partners don't understand the things that people with lupus go through, they can't see most of it and it does scare them also. Have you asked him what is upsetting him the most that you may have lupus or that you may not have it. If you have it and he has seen most information about it, it would scare most people. If you don't have lupus than that means it is something else and that it could be worse, which would also scare the normal person. Please let him know there is a place for him to talk to people about what is going on with him and your disease. I hope it all works out for you both.
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