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MS: Some “Manly” Issues

When you endeavor to research more about Multiple Sclerosis, one interesting piece of information that you learn is that it affects women more than men – by a lot too. The National MS Society estimates that women are two to three times more likely to be diagnosed with MS than men. As a man with MS who also had a grandfather with the disease, that number seems staggering. As I’ve lived with the disease for a few decades now, I can tell you that this statistic certainly feels accurate to me. The ratio of women to men who acquire the disease coupled with the societal pressures that many men feel can leave males with the disease at a distinct disadvantage. Not only are there certain issues that men deal with that women don’t, but there are fewer outlets for talking about them and providing discussion for them. So, I’m going to talk about some of these issues here. As always, I encourage discussion in the comments section.

The pressure for men to suffer in silence

While attitudes are certainly changing, a great many men have grown up with a society that expects us to be the “strong, silent” type. I’ve discussed this before, but societal norms throughout the world make us feel like we need to be the providers, that we need to “man up”, and that if we are to suffer, it should be in silence. The invisible nature of many of the disease’s symptoms make this even more difficult. I still worry about what my neighbors think when I am not mowing my own lawn or shoveling my own walks. After all, if they see me, I’m sure I look fine.

Shame, guilt, and “manning up”

When I was married, my wife would have to mow the lawn and do things that, in this area, are typically done by men. Despite knowing I had a good reason for not doing those activities, I still felt tremendous shame and guilt for not being able to do them. That’s an issue that most women don’t have to deal with (though they certainly have issues that only affect them, too). These feelings of guilt and shame aren’t logical, but nevertheless, they persist. Not being able to work anymore caused me some severe issues as well. That feeling that I should be the main or at least a competent breadwinner has had a big impact on my past relationships. While we’ve made tremendous strides towards equality, we’re still not where we need to be.

Penis problems & sexual dysfunction

As Elaine once said on Seinfeld, “I don’t know how you guys walk around with those things”. I’m sure many of us can sympathize with that statement. Men can experience a number of problems with their male only members. Talking about those issues can also be difficult (how many people still giggle a little at the word “penis”? I’m willing to bet more than would like to admit). Sexual dysfunction is a massive issue for men with MS, with the MS Society noting studies that say 63% of all people with MS experience a sexual decline after diagnosis, and up to 91% of men are affected by sexual problems. 

Many MS symptoms can impact sexual function

These issues aren’t all directly related to the penis though; fatigue, numbness, pain, and mood changes can have a massive impact on our ability to have sex. Even without those symptoms, the ability to achieve an erection or orgasm can also be common issues for men with MS. Not only are these issues difficult to deal with on their own, but mentally they can also have a massively detrimental effect on us. Men are supposed to be virile and sexual, that’s what society says anyway; when we aren’t, that messes with your head.

Trouble achieving orgasm and lack of desire

It’s been a pretty long time since I’ve had sex (my MS potentially causing me issues finding a potential partner is a whole different article I should write); however, back in the good old days, I had my fair share. I’ve personally never had trouble getting an erection, but I have most certainly had trouble achieving orgasm (and still do at times, when I um, “practice” alone). I also suffered from a lack of desire to have sex, which definitely messed with my head a bit and had a pretty negative effect on my relationship at the time.

Bathroom-related problems

While men and women both experience bladder and bowel issues because of MS, these are difficult issues for men to talk about. The same spasms we can get in our arms, legs, or just about anywhere can become an issue when it comes to our bowel and bladder as well. Sometimes we can’t empty completely, or control when something comes out. At times, we can also experience a sudden urgency to vacate our bladder or bowels, whether we legitimately need to or not. I’m not immune to these issues either: while it’s not super common for me, I’ve certainly urinated myself, in public, on a few occasions (when will I learn to stop wearing khakis?!), many times not even realizing I’d done it until someone pointed it out. Not the most pleasant of situations for anyone, especially someone as young as me.

Getting help

Whether it’s the pressure we feel because of societal norms, sexual problems, or having bathroom issues, you can get help. These types of issues are embarrassing though, so I know a lot of men won’t even talk about them, let alone seek proper help. There are men out there that could be leading much better and happier lives with MS, if only they’d talk to their doctor or even their loved ones. It’s difficult, trust me, I know. But there is nothing unmanly about having MS; there is no reason to be embarrassed. You’re dealing with difficult issues and being willing to talk about them and seek help is important. If that’s not being “manly,” I don’t know what is.

Breaking down stereotypes and stigma

There are more male-specific issues out there, this was a pretty broad stroke at just a few of them. I hope to tackle more of these topics (and am always open to suggestions) in the future because it’s time to break the stereotypes and the stigma.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • MargieF50
    2 months ago

    Great article! I always enjoy your writing, but this is especially good and so needed.
    One thing that I and likely many other women wish that men understood: There. is more than one way to skin a cat! (folk wisdom)
    By taking the emphasis off that erection, or lack of one, partners can feel close, have fun and find satisfaction. It takes some bravery to broach the topic. Try other things! Be brave and adapt! You might be surprised…

  • Shelby Comito moderator
    2 months ago

    It does take bravey to broach this topic, and I commend you for your courage and for sharing your advice, @margief50!! – Shelby, MulitpleSclerosis.net Team Member

  • MargieF50
    2 months ago

    Thanks, Shelby! My husband and I are into our ’70’s and married for 30 years. It’s still a bit difficult at times! Very worth the effort to make it happen, though!

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @MargieF50, appreciate you chiming in!

  • CTLH
    2 months ago

    Devin – great article – again – thanks.

  • Devin Garlit moderator author
    2 months ago

    Thanks so much @CTLH!

  • joshremus
    2 months ago

    All of the above? All of the above.

    I will say that since I went to intermittent catherization that a lot of my urinary issues were greatly helped.

    I still love that false sense that you have some liquid running down your leg. Hurry! NOTHING.

    I’d say we should have some forum re: just men with MS, but most probably wouldn’t participate. MEN, lol

    Thank you for your article!

  • Devin Garlit moderator author
    2 months ago

    Thank you @joshremus! Yea, it can be hard to get men to participate in forums about some of this. I used to be that way too. I did have a lot of private messages when this one was released, so I’m glad folks are at least seeing that they aren’t alone, even if they don’t feel comfortable discussing it a somewhat public setting. I definitely understand.

  • Yoshitail9
    2 months ago

    Devin
    Only one word…DITTO !

  • Devin Garlit moderator author
    2 months ago

    Thanks @Yoshitail9!

  • markt
    2 months ago

    Devin
    And again your right on with your article
    im extremly stoic
    that is according to the dictionary
    a person who can endure pain or hardship without showing their feelings or complaining.

    When I was a kid I would always build things or do things and I would in my head put a time limit on almost everything I was doing and I would say (to myself) ok 10 seconds I have to do this or else the mission will fail and the other astronauts would not make it (I would always be an astronaut working on the ship in my head) well I still do that and do things that I should not be doing . Boy do I suffer later for that but I still have that kids voice in my head driving me to push push push
    and my first 4 years of MS I even lied down to my doctors I “was fine” that’s what I said but wow was that ever far from the truth
    the more personal things like Bladder issues I suffer everyday and funny thing my bladder muscle I have no power over I can’t make it contract or whatever so that’s a gravity flow thing for me (fun right)
    your right about us men who just don’t ask for help and don’t even tell others how they are feeling
    for me even the less private things I have an issue sharing you can forget about the more private things and I must say its your articles that have helped me the most of anything to share what’s going on with me
    I thank you for that

    keep up the great work

  • Devin Garlit moderator author
    2 months ago

    Thank you @markt!

  • Legsonstrike
    2 months ago

    This was an awesome article as well Devin, my husband has been reading them, even though I’m the one wITH MS. He says you really know how to put things into perspective!!

  • Devin Garlit moderator author
    2 months ago

    Thank you @Legsonstrike! Happy to hear he has been reading as well!

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