Where Are All The Guys?

[Racer]

On all the different facebook pages, blogs, etc... it seems to be 99% ladies? It seems the ladies join together, find support in each other, become friends, advocate, blog... every now and then I see a picture from a conference, with 100 women, and one guy standing off to the side feeling awkward? Maybe someplace out there, two guys with dysautonomia are sitting in a garage working on a car drinking non-alcoholic beers! (okay, maybe that would be awkward also)

[MomtoGiuliana]

Women are 5X more likely to develop POTS than are men. That must explain some of the disparity. But perhaps men are less likely to seek support from a group.

[Christy_D]

I think men are less likely to seek help on these forums. I am on here for my 18 year old son, who never discusses his illness with friends and is not interested in the things I find from researching. I tried to encourage him a couple of years ago to join dynakids.org for kids with POTS, but he had absolutely no interest. So, I think part of it is a 'guy thing'.

[Zap]

I'm here - I do think there are at least a few of us guys who tend to post, but in the greater scheme of things there are a lot more women. Don't get me started on how that seems to insinuate at least SOME gender bias not unlike that of autoimmune disorders.... The doctors sure as heck don't see it, but it seems pretty obvious from being around here for any length of time.

There definitely have to be more of us than are represented here on the forums. I wonder, though, how many swear off all treatment due to the abusive nature in which some of us are treated by the medical profession. Especially if they tend to see mostly/all male doctors, many of them are very dismissive, and if there is no physical marker from testing or as a symptom, the problem simply doesn't exist to them. It makes me think about reading how MS patients were told they had psychiatric disorders in the past. That tends to be a no-fly-zone for a lot of guys. Due to these socially imposed concerns, I wonder if the misdiagnosis rate for guys is even WORSE than it is for women.

At any rate, it is frustrating to be in a position where society expects you to be the bread-winner and to feel so crippled and worthless by all of this that maybe it deters most guys from admitting anything is wrong with them at all to save face. I've sadly noticed this ego problem with other social concerns amongst guys. Not only does it stand in the way of self-honesty, but it then just perpetuates injustice because of the silence. Come on, guys, we're better than this. Really.

Sorry for the rant - I've been having a few REALLY BAD weeks and I'm getting very tired of the inaction on the part of all doctors involved.

[looneymom]

I agree with Christy. I have a 13 year old son that does not care to discuss his illness. He just wants this nightmare to go away.

[PackersFan]

I'm here. Definitely been a struggle to talk about it. Often times on my crappy days I say nothing, my wife doesn't even know. Guess it's pride and our innate nature to not express our feelings and what we're going through. Definitely a challenge. I know I don't talk about it because you feel like your burdening the people around you. You hunker down and do what needs to be done (total dude philosophy right there).

[green]

I'm a guy. I have POTS. I don't talk about it with anyone anymore. When I went to see a specialist, I told my friends I was participating in a study because of a "childhood ailement that I grew out of years ago." No one asked any follow-up questions, because men are not supposed to have illnesses or complain about sickness. If they do, that's a bad sign that you should get away from them. Or... at least that's what I've learned from having POTS.

So, I think that explains why you don't know of any men who have POTS.

Where are these conferences full of ladies held? Sounds like something I'd be interested in.

[thegron]

Last time I checked.. I'm a guy too! lol

[Racer]

I guess I have never really fit into the tough guy type. I have always been a bit nerdy, pencil thin arm muscles... the type who was routinely bent into a pretzel and shoved into a locker in school.

I compensated by being a good listener, someone who is very open, that you can trust to tell your most personal secrets. I am open with friends, and have had very deep conversations with most of them. I try not to go rambling on about my own problems, but try to relate to them at any opportunity I can.

At the end of the day, I guess it all comes down to self image. The type of guy who puts priority in building muscle mass in order to impress others and appear as the alpha male... that is not me and never will be. I proved strength to myself as a elite athlete. When I couldn't compete anymore because of dysautonomia I decided to express myself and the feelings this brought on, threw art.

I do understand it, but I guess I just dont get why it so strongly holds guys back. I would love to show up at those events and fit in to the community more, but it just seems like it would be way to awkward (and a bit creepy) if your the only guy!

[docradmd]

I'm here. Never the supreme athlete but smart as a whip, geeky, and type A driven. Now with an excellent job which fortunately I can do sitting down. Still wrestling with POTS which came up 9 mo ago followed by gastroparesis. My family and wife dismiss it. My father dismisses the EDS that he passed on to me. He fortunately doesn't have POTS. My life really does **** now with POTS---I miss my old health.

[Tachy Phlegming]

I think of my social circle/people related by family I've known and know some people I'd think personally have autonomic problems,including some men. The men generally seem to have bogus but somewhat serious diagnoses of different organs for which they receive heavy-hitting meds which eventually work.

The blood pressure and pulse problems of the men are often totally ignored or put down to something else and the presentation isn't POTS. You try to have a discussion about the autonomic nervous system with them and they're generally pretty uninterested.

"Where are these conferences full of ladies held? Sounds like something I'd be interested in" --that's about the right attitude. I prefer talking to men so if I'd had a choice of a patient group, I might have chosen a condition from which mostly men suffered.

[Racer]

You try to have a discussion about the autonomic nervous system with them and they're generally pretty uninterested.

Lessons I have learned that work for me... I could ramble on all day about anything I am interested in, but I have found people dont want to listen to me? This is stereotypical for a person with asperger syndrome like myself. I have found people want to share and have a two sided conversation. If I wanted to talk about pots, and I know the person I am talking to has a relatable disorder like diabetes, then I would start off the conversation asking them how they are doing, and lead on to asking them about there diabetes. At some point if I could relate to them about pots problems, and the conversation becomes two sided, then they would be more likely to ask questions and talk and relate to me about pots. To me, the conversation would be much deeper then simply reading each other lines from a text book. It would be more about the experience then the label. People are unwilling to fully learn the level of knowledge that we do, so I think the best we can do is hope they can relate to what we are going threw, and show a little compassion.

[Tachy Phlegming]

I never have wanted to discuss my condition with these people really. Yes, I have enough in common with them, having received some of the same wrong diagnoses and yes, they suffer plenty, so it's not as if you're talking to someone who doesn't have a lot of what you have.

I'm just very curious as to whether their doctors have discussed the autonomic nervous system with them, the organs it affects, why some of their serious conitions are "atypical" and why they have so many of them. Or why their doctors haven't had that discussion with them.

Spinner posted today "I dont consider myself to have POTS because i rarely go into the classic symptoms, but ive got everything else associated with dysautonomia." I think we'd have more men here and more reasonable treatments if more men could get to the intellectual realization he has.

[spinner]

I use this forum as a tool----to help myself learn from the threads, and to help others by sharing what ive learned.

Its really not to make friends even though i try to be friendly in general, etc.

For some reason, theres more of a friendship emphasis over at the sleep apnea board for guys, which IS dominated

by males.

[MarkA]

I talk about it freely but mostly to educate people or to warn nurses prior to blood draws like yesterday. My wife is pretty well in tune to it now and can see when I get up and get lightheaded. I know what it is like not to fit the mold guys.

[statesof]

Here also, i tend to feel like women are much better at understanding the day to day struggles with this disorder and actually want to engage in understanding, while most of my guy friends i tend to loose after i start explaining what POTS stands for, end of conversation, but yes i'm very aware are of the fact that both with POTS and migraine there tend to be statistically more women than men who are affected by these conditions, i just happen to be one of those lucky ones.

[davecom]

We're here and we're naturally underrepresented since we're only ~10-20% of the POTS population. It's an odd position to be in, but I have found doctors to be fairly sympathetic (in comparison to some of the horror stories I've heard about female patients).

[andybonse]

Male here also,

I couldn't believe it when I read its almost always females who get it, my luck I thought, not that id wish it on male or females.

I think its important for anyone who has POTS to learn as much as they can, that way you can try different things, learn how to cope and how to feel better etc.

We HAVE to keep up with the research and new treatments ourselves as no doctors truly understand and only small studies are being carried out so we have to keep tabs.

Oh the potsy world we hate you, youve taken a lot of our lives.

[davecom]

I agree with Andy 100%. It's a disorder where you need to do your own research to explore treatments and underlying causes. You may even need to gently lead your doctor in directions you want to go... especially if he has never seen it before, or only a couple times.