The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Chronic fatigue and masculinity

Discussion in 'General ME/CFS Discussion' started by leeds_91, Jun 23, 2016.

  1. leeds_91

    leeds_91

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    Hi all,

    Firstly, let me say that I don't mean this post to be at all negative or divisive.

    I have Postural Tachycardia Syndrome (POTS), whose main symptom is chronic fatigue. I'm part of a POTS support group, but it's 95% women, and I find that one of the hardest things to deal with is the condition's effect on my sense of masculinity, which I can't really talk to women about. And I have found virtually nothing on the specific experience of men via Google.

    Fellow men:

    - Do you have similar challenges in terms of how chronic fatigue affects your sense of masculinity?
    - If I set up a forum specifically for men with chronic fatigue to support each other, would you be interested in joining?
    - Or would you be interested in just having a single thread on this forum, to the same effect?

    As I said, I don't mean this post to be at all negative or divisive - hope you understand where I'm coming from ladies, and do feel free to contribute too!
     
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  2. Skippa

    Skippa Anti-BS

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    Hi, don't worry about feeling divisive, I think you raise a very good point.

    Certainly, I can imagine a female may feel equally awkward discussing, say, her period in a room full of mostly men.

    The two sexes have much in common with these illnesses, but also inescapable differences.

    Yes I feel my masculinity is "dented".

    I like the very mixed population of PR.

    Male specific threads can and do pop up.

    I think a thread in this forum would allow you to gauge whether or not enough men are concerned about this to bother joining an entire forum. I'm not sure I would.

    :)
     
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  3. AndyPR

    AndyPR RIP PR :'(

    Hi @leeds_91 and welcome.

    Yes, and I think this will be an understandable tendency for anyone with an invisible condition.

    I'm with Skippa on this, while I may join in on a thread posted here, I would doubt I'd be engaged enough to sign up to a separate forum.
     
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  4. msf

    msf Senior Member

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    Can´t we just go to the pub? Oh, right, we can´t...I´m also all for a male issues thread or sub forum (if the ladies have one, that is).
     
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  5. panckage

    panckage Senior Member

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    @leeds_91 what effect have you noticed it's had on your masculinity?

    I've noticed that if you don't have energy a woman is not gonna be attracted at all. The flood needs that energy to start haha

    So with women, well my dating life is pretty empty. But I do have the odd good day so if there's a woman I'm attracted to I go all out. Actually I think I have a lot in common with Cinderella. When my fairy godmother gives me energy I have to make sure I go all out because I know soon it will all just disappear :rofl:

    @hvac14400 is pretty manly maybe he has something to add ;)
     
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  6. MastBCrazy

    MastBCrazy

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    There are so many aspects that get impacted, and POTS isn't even a big symptom for me. When my ataxia has me stumbling along - not sexy. When brain fog and cognitive symptoms are high - not engaging. And then, even if the stars align for a low symptom stretch (hasn't happened in years) no energy to romp with the virility of my days of yore. Long walks (can't do), candlelit dinners out (food sensitivities rule out most restaurants), and talking for hours (if I don't have fluency and word finding issues, I'm lucky to manage an hour), etc.

    Luckily, my PEMF treatments are good for NO production systems, so erections aren't the issue, just what to do with them. All in all, fatigue is too bad usually; I'd be like a dog chasing a car - what to do if I catch it...

    For self-servicing, I've even needed to become creative.;)

    And then there's the hit that one takes to the whole capable, self-sufficient, provider persona...

    Like so many things, most of the time it is most helpful to 'not think about it' (the mindfulness approach: notice the thought/emotion without engaging, pursuing or judging, and allow it to pass like a cloud in the sky).
     
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  7. Richard7

    Richard7 Senior Member

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    I am not sure exactly what you mean by masculinity. I mean I am aware of the concept and how it is used in gender policing and selling stuff and so on.

    But not sure how this really relates to CFS/ME.

    If its about libido, frustration re loneliness, life and opportunities lost etc I expect that is universal, but yeah I can imagine that some men and women might prefer to discuss such things in a space that is gendered.

    And I guess there are certain symptoms one might not want to discuss.

    Not so much guess and know

    Ok I will admit that there is one symptom that I have not discussed re POTS, due to embarrassment I guess, that I might as well mention here. When I get POTS so bad it is leading to anxiety/ a panic attack, I always feel a bit like I am about to have a spontaneous erection.

    Indeed the first few times I though this had happened, and that was the source of my anxiety (I was in public) but when I got to a place that was not public I checked and there was no erection.

    I read up enough on it to know that spontaneous erections were not well understood, hard to study when they are unpredictable, but thought to be related to hormone fluctuations. They were also usually described as things that happened in people's teens and twenties, but was still rarely (two or three times a year) happening up into my 30s.

    So maybe a sign of an autonomic issue or something?

    Thing is that for all I know this could be unique to me, or common to men and women on this forum. Men and women tumesce we just have different arrangements of erectile tissue.

    Or it might just be that I have sudden unexplained anxiety and my some internal thought process jumps to the most likely culprit. I do not know.

    If people are going to say things they would not otherwise say this makes sense. But I don't really want to join a gendered space. I would rather, as here, write the embarrassing thing (In an open forum, Oh my) and tell myself to grow up.

    (Which is a comment about me, not your need for gendered spaces. Which the autonomic forums you have been on may be for all I know. I have spent time in spaces that were gendered male and places that were gendered female. I felt just as uncomfortable in each, but can understand how one gendered female could be a bigger issue, particularly if we had a need to discuss questions that related to male biology.)
     
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  8. hvac14400

    hvac14400 fatty & acid : )

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    not much really. i got pretty busy last years anyway, "fortunately", he-he.
    i like to go balls to the wall too, so there was a choice for me at a certain moment - wimenz or the gym. then i said fokk 'em and guess what i chose to focus on? :D

    i believe regular physical strain is better/more important for your overall health (both mental and physical) than regular sex anyway, for your longevity and long term success/development in life, at least while you are in a cfs state. but that's just me :whistle:
    and to be in that state forever is not a part of my plans in any case.
     
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  9. panckage

    panckage Senior Member

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    I find they are both the same thing. Sex comes out of the exercise budget :rofl:. Happiness for me has always been about having a well rounded life. With CFS I think its hard to be a specialist in anything but I believe that even if my condition never improves I can still have a taste of everything if I balance well. So far I haven't been able to find that balance...

    Early in this illness I did manage to date a nice lady for 1 year (exactly lol). She never noticed I was sick, I think because of her ADHD. I have ADHD too so it made us a good match :heart:

    I still remember being with her before ritalin. I would be on top, face down in a pillow scrunching up my face. I didn't have enough energy, I felt like I would pass out. The things we go through to make women happy haha

    But after ritalin WOW I became animal. No more issues. Rrrrrrrrrrrrrrr! :cat:
     
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  10. Skippa

    Skippa Anti-BS

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    @panckage I'm imagining post-ritalin you are the duracell/ever ready bunny humping away non stop wrrrrrrr lightning speed! :thumbsup:
     
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  11. hvac14400

    hvac14400 fatty & acid : )

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    it's not that am not having sex anymore at all - just not focusing on it as before, its priority for me dropped down like a bomb : ) coz there is one lil problem here, at least for me personally - only the body in cfs state, while mind is not.
    before cfs i was used to have up to a 45min long non-stop sex sessions, while now i can only manage up to 15min and my brain just freaks out and being like "wtf? what's this - some sort of joke or what?". how you suppose to "balance" non-cfs brain with cfs-body, when your time is cut more than in half? the mind just gets unsatisfied and angry, on this fokken weak body. and there is nothing healthy in being angry everyday, lol.
    so fok it.
    until better times :)
     
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  12. msf

    msf Senior Member

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    Think of it this way: you can still last about 13 min longer than someone who suffers from premature ejaculation (not making fun of this disorder, just pointing out that there is always someone worse off than you).
     
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  13. msf

    msf Senior Member

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    Perhaps it´s because I haven´t had sex for a while, but I can´t work out what position you are describing - is that the ME position?
     
  14. hvac14400

    hvac14400 fatty & acid : )

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    i can't - my way of thinkin always was "there is always someone better than me, so i must progress further".
    and why think about bad (worse) things anyway? that's not fun : )
     
  15. Mrs Sowester

    Mrs Sowester BRING BACK KINA

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    Agreed. In an ungendered thread I, a woman, wouldn't be at all comfortable discussing sexual issues relating to ME. I'd worry about giving someone the wrong idea or think I was being flirtatious!

    Having said that I'd like to tell all you chaps I think it must be even more difficult re sexuality and performance with ME. Women can get away with being passive.

    Now I'll slope off to another thread and let you talk man stuff...
     
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  16. msf

    msf Senior Member

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    The part that is more daunting for me is sleeping with a woman. And by that I do not mean I am a virgin. I mean that I was always a light sleeper, and wouldn´t get much sleep when I slept with my girlfriend, and that was when I didn´t have high levels of LPS in my bloodstream disrupting my HPA (sorry for getting graphic)! That´s why I was happy to find that my new place had a guest room - I thought, I can pretend I am asleep, and then when my girlfriend falls asleep, I can go and sleep in the other room! If my girlfriend ever discovered me gone, I would just say that I must have sleep-walked. I see to have been getting ahead of myself, though - I should put more thought into first finding a girlfriend, and then think about ways I can decieve her.
     
  17. panckage

    panckage Senior Member

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    Missionary with me on top. What is the ME position?
     
  18. msf

    msf Senior Member

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    I assume you are not a heavy man then.
     
  19. panckage

    panckage Senior Member

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    210lbs... Weight goes on knees and elbows, really not an issue... I don't do the dead fish thing on top if that's what you mean. I guess maybe that is what you mean by the cfs position :rofl:
     
  20. Valentijn

    Valentijn WE ARE KINA

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    I don't think you need a complicated excuse for sleeping in a different room. It's actually gaining popularity. Or rather regaining popularity, since it used to be more of the norm. A good recent article on it is https://www.yahoo.com/news/6-reasons-why-boyfriend-love-150000870.html

    My fiance and I have been in different bedrooms for most of my illness (5 years). Mostly because I can't stay up nearly as late as he does, and I sleep too lightly so every snore is a problem. And I really need 8-10 hours of quality sleep to be at all functional the next day. We can still cuddle on the couch, or even spend time lounging in bed together before I go to sleep. So sleeping all night in the same bed really doesn't have to have much to do with emotional or physical intimacy.
     

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