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Clare you are a true star...thanks for posting this article!
 

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Thanks...definitely interesting. After dealing with lupus cns outbreaks for the past ten years and finally getting diagnosed three months ago, I'm thinking that there may be many men out there who are either being undiagnosed or misdiagnosed...simply because "lupus is a woman's disease."
 

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here here !

Antaeus;549763 said:
Thanks...definitely interesting. After dealing with lupus cns outbreaks for the past ten years and finally getting diagnosed three months ago, I'm thinking that there may be many men out there who are either being undiagnosed or misdiagnosed...simply because "lupus is a woman's disease."
My husband has been dianosed for 2.5 years i would love to hear about lupus from another mans perspective but having trouble getting in touch with anyone in the area! we live on the east coast of England
 

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That's a great article ClareT and thanks for posting it.

One thing I take issue with though. Many articles like this that refer to men who suffer from chronic or "women's diseases" always talk about male patients having self-esteem issues in a way that almost suggest the men are bringing pyschological problems on themselves.

As a man who has sufferred with a chronic complaint, still not completely diagnosed but probably on the Lupus spectrum, for 23 years now; I resent this suggestion.

I was quite young when I started having problems and had fairly good prospects. I was not brilliant, really good-looking or especially charming but that would not have stopped me from getting a good job and a satisfying relationship. How do I know? Because I managed both those things WHILE I was sufferring anyway. However, because the disease has kept getting worse I eventually had to let both the relationship and job go. Actually, I had to let quite a few relationships and jobs go but that's a different story.

Now I know that illness is tough, whatever your gender. I know that there are as many women, probably a lot on this thread, that have had partners walk away from them because of their ill-health as well. And for all of you, I can only hope time heals. But there are some things that are different - and worse - for guys.

In the dating game, for instance, who normally makes the first move? And believe me, it takes a lot of strength to make that move, especially if you're a plain guy like me. Yet, I accepted that that was the way things were and did "what a man's gotta do" :) Now, I'm living on benefits, fatigued, in pain and have brainfog that can make me talk gibberrish during conversations sometimes, so I simply don't have the confidence or strength to make that move. And as for the long-term financial implications of relationships (women may not want a provider anymore, but I have never met a woman that didn't want a guy who at least had the prospects to pay their way) forget it.....

And I have tried internet dating. Even sites specific to disabled people. You know what happens there? Working, healthy non-disabled guys or guys with less disabling health problems (colourblindness or webbed-foot are two examples I have seen) post pictures and profiles and raise the women's expectations beyond anything I can match.

Even allowing for the fact that my own case is probably a bit extreme (my brainfog is hard for me to live with, let alone anybody else) it's not a level playing field for men with autoimmune or chronic complaints.

I sometimes say to single female friends that even if I wasn't disabled, I'd still be single - but I only say that to make them feel better (isn't that nice of me :) ). THERE IS SIMPLY NO WAY I WOULD BE SINGLE OR JOBLESS IF IT WASN'T FOR THE CHRONIC I'M SUFFERRING FROM. So why do I feel I have to say it to these friends? Because it makes life sooooo much easier. Because the healthy world out there is just so competitive that even nice friends can't help using me as a springboard for their own egos. And that's the nice people.

As much as women get it in the neck from other competitive women, until you've got a competitive man on your case, you've got noooooooo idea. And because I've never "looked ill" and have always tried to succed despite everything, I have loads of competitive men on my case.

Well now, all those ultra-competeive guys have drifted away. it's no sport for them anymore as even they can see how ill I am now. But the blows to my self-esteem remain. My lack of confidence remains. My declining ability to handle rejection remains. I am still determined not to take out the illness on anyone else but largely, these days, that means avoiding all possible situations that may bring on negative emotions. Like trying to date :lol:

So, I'm a guy (and I'm know I'm not the only one) who has been stuck in the vicious circle of no health improvement -no job -no-money -no confidence-no partner- no prospects - no health improvement.

Now tell me how, as a man, am I not going to suffer self-esteem issues?
 

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Hi lup,

Upon re-reading the article I don't think they are insinuating that men are bringing these feeling on themselves (maybe other articles do?) . I took it that men's circumstances are different to our own and present with their own set of problems which were outlined in the article and explained very well by you also. As you say is there any wonder there are self esteem issues! It's not the fault of the patient but the circumstances the disease forces upon them.

Hope your weekend is going ok.

love
Lily
 

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I understood it in the same way as Lily but you have also written very well to express it :)
 

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Lily;552651 said:
Hi lup,

Upon re-reading the article I don't think they are insinuating that men are bringing these feeling on themselves (maybe other articles do?) . I took it that men's circumstances are different to our own and present with their own set of problems which were outlined in the article and explained very well by you also. As you say is there any wonder there are self esteem issues! It's not the fault of the patient but the circumstances the disease forces upon them.

Hope your weekend is going ok.

love
Lily
Hi Lily

I have re-read the article myself and it doesn't wholly imply men are bringing the feelings on themselves - but they do talk about men sufferring from "false feelings of loss of masculinity". As if society is suddenly going to
ignore 4000 odd years of expecting certain things from men, just because those men have Lupus.

However, having said that I apologise if my post upset anyone, and I didn't mean to imply men always have it worse. I don't suffer from skin rashes for example, but it must be hard for everyone, especially women, who do.

Katharine;552685 said:
I understood it in the same way as Lily but you have also written very well to express it :)
Thank you. Sometimes it feels like the only skill I have left that I have any confidence in is that I can still express myself fairly well in text. When I'm not too tired of course :) (And I had to have a nap after posting last time :):))

Hope both of you are having as good a day as you can.
 
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