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Duncan
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Discussion Starter · #1 ·
Guys,

I've read in a few places that men generally get lupus far worse than women. I've had some really bad times but they seem insignificant compared to the majority of the descriptions women post on this site.

Is it a myth that we get it worse or is it that only the women who are having a worse time than us post their experiences?

Food for thought. I'm not after a 'them and us' fight. I'm just questioning what I've read. I have never met another person with lupus so have nothing to compare my symptoms to. The only other person with lupus at my doctor's surgery is a lady whose lupus only affects her ankles slightly (oh heaven. If only....)

What do you think?
 

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Hi Duncan,

My rheumatologist told me the same thing. Men seem to get lupus worse than the women. My brother has lupus and I have it too. ( I am female) We have similar symptoms but then we are different too.

You have to remember that most people with lupus are living a fairly normal life. They are way to busy to post on a message board.

Take care,
Lyn
 
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Duncan I know this will sound sexist but being married gives me the licsence. I think it is not in a man's make up to share. Fella's try to handle things on there own where us girls are more likely to look for support. Just a thought. But I don't know any men with lupus.

Stacy
 

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Hi Duncan

After lurking for a while and then recently engaging on this site, I don't think women suffer any less than men with Lupus - at least physically.

Pyschologically though, I think it's a whole different ball game.

Does anyone remember airplane, the comedy spoof film? Remember that bit, just after the famous "does anyone know how to fly a plane..." where one stewardess is going around asking all the other people on the plane how they are coping? And a women says something like, "yes we're all going to die horrible deaths, but at least I'm married.."? There was a reason why the single people in the cinema didn't laugh at that.....:)

Just read the posts from women on this site. A lot of them seem to be married, in relationships or seperated from relationships that resulted in having children. It is hard having Lupus whoever you are, but if you are married or in a relationship it is likelier to be better than if you're single and if you are a woman with Lupus you are likelier to get married or be in a relationship, QED.

Even if you're a single mother, just the fact that you've managed the life-affirming joy of giving birth to a child may give you a daily boost that a single man with no kids (i.e me :p) can only get if he decides to try some "street" pharmacy :wink2:

I feel sorry for anybody with Lupus, but christ, do I feel sorry for any previously fit and healthy young man in a relationship who gets a bad case of it! Will his girlfriend be able to cope? Will she want to? Will he be able to cope with thinking she's going to leave him for one of his healthy mates any second? Will that change in his thoughts make his behaviour worse and lead to the vicious circle of her wanting to leave him anyway?

I wish I had been 25 and in a relationship when I got ill. I was eighteen and had never had a girlfriend. My body was falling apart and yet I had to man-up and do all the things, earn, compete,date that were expected of me. And as time went by, I failed at each one. Do women get put under the same pressure by society? When do you ever hear a man turn to an under-performing lady and say "come on, stand up and be a woman for god's sake"

And as for men not sharing their feelings, that's a myth that is long overdue for exposure. When I have tried to share my problems with girlfriends in the past, very few of them can cope with dealing with it. I don't really blame them, Lupus isn't a broken leg or even a serious accident, where a person can be nursed back to health, or even just nursed in a stable condition. It's often (if you have it bad) a steady, frustrating, "but-you-don't-look-sick" decline until you get the right treatment. More than that, even though it looks likely, I may not even have Lupus so for almost twenty years women had to put up with me tearing my hair out with an "undiagnosed" chronic illness.

And here's the kicker: how many women will read this post and privately think I'm a just a whiner who secretly doesn't like women anyway, regardless of ill-health? For all those of you who do, even though I have been nothing but honest, that in a nutshell is why it's mentally harder for men with Lupus than women :p

On the plus side it only took me an hour to type all that and with hardly any mistakes. Maybe the steroid shot is working......
 

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Jen
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I've been on this site for a couple years and I've found that many of us who are on somewhat regularly have lupus that is particularly complicated and can't maintain a regular job. Those who do a little better with their lupus are able to work and be more active and aren't seeking or sharing as much. So you may not be getting the full picture here, a lot of newbies looking for information and then several complicated lupus cases.

I think we've all got it pretty tought but we all try to make the best of it.

Wishing you well.
 

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Hi Duncan :)

Most of the literature I've read on Men with Lupus (and admittedly it's not extensive reading) point to the fact that they are often misdiagnosed or not diagnosed at all until they present with very serious advanced disease. I'm only guessing...... but this may be a factor in why they are perceived to have more serious disease sometimes than women. Perhaps if they were diagnosed/treated earlier then their Lupus would not have had a chance to progress to that stage. Unfortunately because of the 9:1 ratio doctors don't really consider Lupus as a possible diagnosis for most men :(

Lup there should be lots of threads showing up in the Men with Lupus Forum? They are for me.

http://www.thelupussite.com/forum/forumdisplay.php?s=&daysprune=&f=43

love
Lily
 
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Lily;556727 said:
Hi Duncan :)

Most of the literature I've read on Men with Lupus (and admittedly it's not extensive reading) point to the fact that they are often misdiagnosed or not diagnosed at all until they present with very serious advanced disease. I'm only guessing...... but this may be a factor in why they are perceived to have more serious disease sometimes than women. Perhaps if they were diagnosed/treated earlier then their Lupus would not have had a chance to progress to that stage. Unfortunately because of the 9:1 ratio doctors don't really consider Lupus as a possible diagnosis for most men :(

Lup there should be lots of threads showing up in the Men with Lupus Forum? They are for me.

http://www.thelupussite.com/forum/forumdisplay.php?s=&daysprune=&f=43

love
Lily
Lily, your guess about men not getting tested until late, and the reasons why, is an excellent one. I only had a test this year after 20 odd years of ill-health and I know of another guy who has had similar problems to mine for about ten years that has never been tested for Lupus either. (He's waiting to see what happens with me, then may go get tested himself)

I'm still not sure men get it physically worse, but it may well take longer before they are treated, for sure.

But I still can't see any other threads in the "Men with" forum???? I am dazed and confused at the best of times, but even when I clicked on your link it said "showing thread 1 of 1"???? What am I doing wrong/not clicking????
 

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Hi Lup92

You might have to adjust your settings in order to view 'All Threads'. The settings can be changed to just view from a certain cut off point or all threads.

To do this click on your UserCP on the banner line above. Then select Edit Options from the left hand menu. Then scroll about half way down til you see Thread Display Options. The last box in this section allows you to select View All Threads.

Dont forget to scroll down to the bottom and press Save Changes.

Hope that works!
Joan:rose:
 

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Duncan
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Discussion Starter · #10 ·
Some interesting thoughts here. I'd like some more input from the men lurking here....

I, too, went with sypmtoms undetected for 25 years before diagnosis. The unexplained swollen lymph nodes seen by 3 doctors should have been a hint, or the early arthirits, or the skin complaints, etc. But I saw maybe 15 doctors over the years with my lupus symptoms who hadn't a clue to think about lupus.

So maybe the thought that men get diagnosed much later in their illness (and so in a severe state) than women may hold true.

I, like lup92, cannot hold down a job. My wife can't cope with my illness. And of course everyone I talk to about it says I look great and think I'll be better next year. However, I'm sure this happens equally to both sexes. There are plenty of single females out there who are struggling like us fellas, but there are far more of them.

I think we do need some more input here to take the hypotheses further! Gentlemen?
 

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Well lets face it, the odds are very small for a man to have Lupus in the first place. Add in factors like men are tough and push through many aches and pains, and "Doctors are only for emergencies" mentality probably plays a big part. Lets not forget the fact that most men have probably never heard or had experience with Lupus before to even know what it is (I was one of those guys). Then, when you have enough symptoms to get a raised eyebrow from a doctor, there lays the key. It only takes one good doctor to begin the process. Once I found a doc that felt I had enough symptoms to begin testing for Lupus, it all went fairly quickly after that but it did take about 12 years to find him.

Do men get Lupus worse than women? Well I know a few women that have it worse than I do so it's hard for me to compare. I get the "You look fine to me" comments a lot too but I just say "I'm broken on the inside" and it usually stops there.

Someone told me once that Lupus takes your life away. For the longest time I felt that was true. I now realize that it only takes our normal life away, you still choose what you want to do with the life you have. Disabled doesn't mean dead and there are people with far worse disabilities than mine. Sure I hate the 24/7 pain and I can't do half of what I used to be able to do, but I will keep trying to set goals and enjoy life as much as possible. If one thing doesn't work, try something else. :)
 

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Joandublin;556785 said:
Hi Lup92

You might have to adjust your settings in order to view 'All Threads'. The settings can be changed to just view from a certain cut off point or all threads.

To do this click on your UserCP on the banner line above. Then select Edit Options from the left hand menu. Then scroll about half way down til you see Thread Display Options. The last box in this section allows you to select View All Threads.

Dont forget to scroll down to the bottom and press Save Changes.

Hope that works!
Joan:rose:
Thanks Joan, but I think my brain has finally gone. I did as you suggested above but I still can't see the "View All threads" option. I'll have another try
but with things like this, if I make a mistake once, my brain "locks in" I tend to keep making the same mistake. Mind you, some mistakes, like putting the iron to your ear when the phone rings, you only make once :p


And I used to have a responsible job managing people....:rolleyes:

Edit: Just tried and I only get these options in the thread display option thingy:

Visible Post Elements
Show Signatures
Show Avatars
Show Images (including attached images and images in code)

Thread Display Mode

Linear - Oldest First

Number of Posts to Show Per Page

Default Thread Age Cut Off
 

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Smile Of Life;556985 said:
Some interesting thoughts here. I'd like some more input from the men lurking here....

I, too, went with sypmtoms undetected for 25 years before diagnosis. The unexplained swollen lymph nodes seen by 3 doctors should have been a hint, or the early arthirits, or the skin complaints, etc. But I saw maybe 15 doctors over the years with my lupus symptoms who hadn't a clue to think about lupus.

So maybe the thought that men get diagnosed much later in their illness (and so in a severe state) than women may hold true.

I, like lup92, cannot hold down a job. My wife can't cope with my illness. And of course everyone I talk to about it says I look great and think I'll be better next year. However, I'm sure this happens equally to both sexes. There are plenty of single females out there who are struggling like us fellas, but there are far more of them.

I think we do need some more input here to take the hypotheses further! Gentlemen?
Sorry to hear that your jobless and it's hard for your wife to cope. And 25 years undiagnosed! Not that it's a competition, but that beats me by two years... A whole quarter century of pain... that's got to be tough.

As regards your point about single females... you wouldn't happen to know where they are would you :wink2:
 

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Tom;557015 said:
Someone told me once that Lupus takes your life away. For the longest time I felt that was true. I now realize that it only takes our normal life away, you still choose what you want to do with the life you have. Disabled doesn't mean dead and there are people with far worse disabilities than mine. Sure I hate the 24/7 pain and I can't do half of what I used to be able to do, but I will keep trying to set goals and enjoy life as much as possible. If one thing doesn't work, try something else. :)
That's an attitude and a half and I hope it is working for you. I used to be a lot more positive but lately, the no-job, no-partner, no-health, no-confidence cycle is getting me down.

But you're right, there are still choices and I musn't forget that.
 

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Hi again:)

Dont worry - when I make a mistake I sometimes get locked into it as well..

In the box titled 'Default Thread Age Cut Off' you should see on the right hand side a drop down arrow and you click on the arrow and a range of options will come up. I think the last one reads 'Show All Threads'. Select that one, scroll down to the end of the page and press 'Save Changes'

I hope that works for you! Let me know :)

Take good care
Joan:rose:
 

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Old Timer
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lup92;557324 said:
That's an attitude and a half and I hope it is working for you. I used to be a lot more positive but lately, the no-job, no-partner, no-health, no-confidence cycle is getting me down.

But you're right, there are still choices and I musn't forget that.
One thing I have always been good at is looking up. When you hit bottom there is only one way to go and that's up. :)

Make a list of everything you really want to do, cross off the impossibles and try to make the rest happen. :thumbs:
 

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Duncan
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Discussion Starter · #18 ·
lup92;557323 said:
And 25 years undiagnosed! Not that it's a competition, but that beats me by two years... A whole quarter century of pain... that's got to be tough.
Lup92, you got me counting. I can remember my first pain in the summer of 1983, which means 26 years! It was intermittent after that, so life was okay. But to have arthritis in your hip (discovered half way through a 100 metre sprint on sports day at school) when you are 13 years old isn't great! Of course doctors didn't manage to diagnose it as arthritis until 24 years later (they said it was ham string issues, back problems, muscle pains, etc.)!!

The upside is that I'll get shiny new hips in a few years time so I can grow old gracefully (and get back to skiing if the fatigue will allow me, just like my father did at 70 with his new hip)!

Tom's right - we need to be seeing the silver lining around everything. Whenever I come to this site it brings me down as I see how much people are suffering. It also reminds me what I've been through. I should be focussing on the good things coming. Today it'll be a stroll by the river in my beautiful town of Richmond-Upon-Thames, once home to Queen Elizabeth the First. My son's with my parents and my wife's at work. Blisss on my own at last!

Have a happy day everyone!

Now, back to the thread: Does that mean there are actually only three men with lupus in the world now?!
 

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Smile Of Life;557397 said:
Okay, Tom, I can't hold back any longer. I've seen it too often and wondered. What an earth is the purple box you put into your messages? I just can't figure it out!
This will explain it Duncan: http://www.thelupussite.com/forum/showthread.php?t=67307
I haven't been able to contribute much this summer for a few reasons, but when the weather gets cooler I will be up and running full time again.

I believe age 13 was my first flare too, it was the worst fever I've ever had. I remember being home alone, sweating badly and almost blind. My body felt on fire and hurt so bad, I just laid there rocking a little begging for it to stop. If that wasn't a flare, I have no idea what it else it could have been. The next day the fever was gone but I was still hurting for a few days after.

I know it can be hard to read about members having a hard time but that's when we need support the most and why this site has been very important to me. I can't respond to everyone that just needs a hug sometimes but I do what I can. I've gotten many hugs when I needed it and know how much it means. This past year or two have been tough for me so I haven't been as active as I used to be, that's just the nature of the wolf. Nobody understands a Lupie like a Lupie and that made a huge difference for me when I first came here. I think most members have experienced the same feeling of relief and understanding at a time of ignorance and worry. Don't be afraid to spread some good news though. Post some cool pics of you skiing or best days of your life type pics, that would make a good thread. :)

There are quite a few men on here, most just stop by occasionally. I would be happy to join up with any of you in chat sometime, we could even set up regular meetings if the interest is there. You can send me a PM anytime as well.

Keep up the fight guys, our life isn't over yet and I'm going to enjoy as much of it as I can. :thumbs:
 

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Thank you for explaining about the purple box, I have always wondered about that too!!!

It went a bit over my head, and my rather limited technical knowledge!

Tom, hope you see some improvement soon, it is tough when we hit a rough spot, but it does teach you to appreciate the good days and the little things. I have put a bird feeder outside my living room window, we live by a park and get a lot of rarely seen birds. On my bad days when I have to rest, it gives me great pleasure and focuses my mind on something else other than lupus. Before I got sick, I would never have had the time to do this. So I count myself fortunate.:)

I look forward to seeing more of your posts.

Deb
 
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