Living as a Male with Multiple Sclerosis

Let’s start this off with a relatively well known Multiple Sclerosis fact; MS affects women more than it affects men. Anyone who has ever searched online for other MS patients to talk to can tell you this because most the people they find are women! According to the National MS Society, Multiple Sclerosis is at least two to three times more common in women than in men. This means that most information out there (such as simple advice) is unintentionally leaving men out of the loop. But guess what? My name is Matt; I am in fact a male with Multiple Sclerosis! We may be few but we are out there! So what kinds of obstacles do men with MS face? What types of considerations must be taken when addressing males with MS? Ultimately, what is it like being a man with Multiple Sclerosis?

Let us look back to when I was first diagnosed with MS just after turning 20 years of age. I noticed this very quickly; every picture of an MS patient I saw in the various pieces of MS literature and websites was that of a woman in her thirties. This struck me as odd as I had not yet learned that MS affects woman more than it does men. After I learned this unusual fact, I started looking around online for other men with Multiple Sclerosis who I could relate to, which at first, was not such an easy endeavor. Over the years I have met many men (both online and in person all over the world) with Multiple Sclerosis and I quickly started noticing something; it was not just me who was struggling to find answers to some of my many questions that only a man with MS could have.


Now of coarse I mostly found out about this through private Facebook groups for men with MS and other various online forums. Most of these online groups however, did not survive very long as most guys slowly stopped posting, replying, or would even just leave the group. Why is this? Well, if you ask me, the majority of men (including myself) are very prideful and we do not like to talk about certain aspects of our lives that we would consider private and/or embarrassing to talk about. It takes a certain type of strength for a man to be open about his feelings or “personal” symptoms. We men do not like to show weakness but what I have learned is that it takes more strength to show weakness than to hide it.

So with that being said, let me bring up a few issues that I feel are affecting most men with MS despite them not bringing it up or wanting to admit it when confronted of the matter.

Feelings of inadequacy; agree with them or not, our society has certain gender roles that typically place the man in charge of taking care of his family, being the bread winner of the house, and protecting his loved ones from danger. The problem is, when a man becomes ill with MS, these roles become challenging or even impossible requiring someone else (often his spouse) to take the lead. Again, I don’t agree with this, but it is something that growing up in this society has instilled into my mind; I feel I should be the bread winner between my significant other and I. Maybe it’s because making more money creates the feeling (or illusion) that you can take care of the ones you love better? Regardless, after MS has run its course, a lot of people can no longer work (or at least not as much or as hard as they could before) putting the financial responsibility on their spouse. Thanks to the gender roles of our society, (and again I can’t emphasize this enough, this is not a reflection of my beliefs on gender roles) this tends to be OK for woman as it’s “the man’s job” (looking at the stereotypical nuclear family and not the modern family of the 21st century) to take care of his wife. Flip it the other way around and a man may feel like a failure, or, inadequate.

Of course these feelings do not only arise when it comes to financial matters. I am going to go out on a limb here and say that most men want to be able to protect their loved ones from danger. If someone attacks my family or breaks into my home, I want to make sure that my family walks away unharmed. If I see a child chasing a ball into the street, I want to be able to get to them in time to prevent an accident from occurring. If a heavy piece of furniture needs moving, I want to be able to take care of it myself! I am a do-it-yourself kind of guy but there are lots of things that I just can’t do anymore because I now lack the strength, speed, coordination, and even the balance to do a lot of this stuff. I am not in the physical shape that most guys my age are in and I can no longer achieve the physical feats that I once could. I may be rather intelligent but there is still that primal desire to be stronger than the next guy but now I can’t even run and a lot of us can barely walk without assistance or are confined to a wheelchair (I have been there). I can honestly say that one of the worst feelings I have ever felt is the feeling of being helpless or unable to do something on my own which is hard for woman as well but I think when it comes to the mindset of a man, of what he feels he should be able to do, it’s a slightly different kind of mental difficulty. Being independent has become more and more difficult since my diagnosis and asking for help is typically not something that comes easy to a lot of guys regardless of age. Asking for help requires a skill (and I deliberately say skill and not characteristic) called humility, which is most often learned over much time or experience.

Now let’s move on to the next issue men are faced with when dealing with Multiple Sclerosis; feeling too embarrassed or prideful to talk about something. Now we all know that most guys have a hard time talking about their feelings, so I am not even going to get into that. What I do want to bring up is how men with MS may experience certain symptoms that they find too embarrassing to talk about or that make them feel like less of a man. First of all, let’s knock out bladder and bowel symptoms because both men and women with MS experience those. This leaves us with sexual problems; something that both men and women with MS experience but in slightly different ways (for obvious reasons). Again, going back to the National MS Society, it is reported on their website that in one study 63% of MS patients reported some sort of sexual dysfunction and in other surveys as much as 91% of men and 72% of woman reported sexual dysfunction. Now, you don’t have to be a mathematical genius to figure out that when most the people with MS you talk to don’t admit to having sexual issues, most of them are lying… An issue of this sort is enough to make anyone feel inadequate! “Why would they want to stick around when I am never in the mood or unable to perform?” I have heard countless stories of relationships destroyed over this and most the time it is do to a lack in communication! Guys in particular do not like to talk about this and if you look at the numbers, guys are the ones who should probably be talking about this the most. But I get it, it’s embarrassing, going back to the gender role thing, it’s almost a mutual feeling among men; “If I can’t perform I am not a real man”.

So when you think about everything I just talked about (which is only the tip of the iceberg) it may seem obvious to conclude that the most difficult part of being a man with MS is simply being a man. We don’t all find it so easy to talk about all of these things, especially when we have such a hard time finding others to relate to. If no one starts the conversation than there is no conversation to join and no advice to be given/found. Starting the conversation would enable us to find other men with MS to relate to which would help us realize “hey, everyone seems to be having this issue, everyone seems to be feeling this way, I guess it’s not all that embarrassing after all!”

So my advice? Talk!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (19)
  • 3 years ago

    thanks, matt. i feel all this stuff. i was a homedad for 13 years when my kids were little, had to figure out how value my work without a paycheck or boss or client, etc. now out of work with ms disability, it’s sort of the same thing, except i’m not doing anything of value. i’m fast approaching complete disability (men tend to be dx later and progress faster than women), and my ability to do anything – wash dishes, clean the bathroom – is very limited. loss of independence is the hardest. thanks for starting this conversation.

  • Matt Allen G author
    3 years ago

    it really is, I sometimes feel like a child asking for help with something I used to be better at doing than anyone in the house. It’s a common issue that no one wants to really talk about

  • Acase
    4 years ago

    Its not a pride thing for me its being worried that i will lose my job wont be able to drive loose my house and not be able to provide for my kids..although mri is not till tomorrow im thinking the worst…

  • Kick
    4 years ago

    How bout if you’ve lived a certain way your whole life?Followed a certain code or way of looking at the world? Then add to that you were next in line to run that way of life. it is a ruthless one,No Quarter given no quarter asked.Add to that you worked in construction For twenty years.
    Now you can’t do either yet you continue to live the life. In fact you’re the leader of that way of life. You hide your MS from those you lead,choosing to lean heavily on your firearms and your ablity to make others carry as well. Because your speed and strength are poor to say the least. What then?

  • Matt Allen G author
    4 years ago

    I am not sure I fully understand. What I do know is not everyone can hide it (like myself) and those who CAN should still join some sort of support group on Facebook or something just so you can get stuff off your chest and be heard by people who understand what other people without MS probably don’t get.

  • 5 years ago

    Matt,good letter. Please be aware that, even though women with MS outnumber men with it by a factor of 3 or 4 to 1, you’re not alone, pal. I am a 50something who was first diagnosed officially in 1997, but, knowing what I do about it, I know my first MS “event”, attack, exacerbation, or whatever you wish to call it, was way back in 1982. which put me closer to your present age, so I’ve been living with MS for years now. One of the things that gets me through it is attitude, attitude, attitude! Rarely does a day pass that I don’t think about just how fortunate I am. I know you might be thinking “fortunate”?, but, when I stop and look around, I realize there are people that I’ve known that have died, some after suffering tremendous, constant pain and agony, like a friend, who died last year (mercifully) after a year of terribly painful bone cancer. And there are so many other terrible diseases, syndromes, illnesses, etc. that can occur to any of us, that make MS look like a walk in the park. Now, don’t get me wrong. I know MS sucks, but there can be things much worse. Try to keep that in mind and I hope that helps you.

  • Matt Allen G author
    5 years ago

    Oh trust me, I figured that out a long time ago. Just in rehab alone I realized how “lucky” I was compared to other people there with other types of ailments. The things I have seen on TV and the internet? Yeah, comparatively speaking, this can be considered a walk in the park BUT, as I have learned, pain/suffering are relative to the individual.

    I also know lots of men and people my age (even younger) with MS, some of which I have met in person, even over seas. So I do not feel alone at all. I was just saying other people usually feel that way but they really shouldn’t.

  • rmdanielsom
    5 years ago

    Matt,

    Nice article. As someone who has a foot in each camp (male and female)I really enjoyed hearing from the other side of the aisle.

    I was born a girl but grew up hunting and fishing with my dad and his friends, so my perspective on things is more guy-like than girl-like. You are a refreshing read.

    While women make up roughly three quarters of the MS population, that is three quarters of the RRMS population. I have PPMS, which strikes more men than women.

    My husband and I had the “provide and protect” discussion when he lost his job. While “society” does put a lot pressure on men to financially provide for and to protect their families (and there is a lot of biological pressure as well), society is now at a point where you and your spouse/so/partner are able to define what “Provide and Protect” means for you and your family more so than at any other time in history.

    I would be very interested in seeing what your definition is, and becomes.

  • Matt Allen G author
    5 years ago

    Oh I definitely agree, as I mentioned, I do not agree with that old fashioned sentiment. My last relationship was with a girl/woman 12 years older than me so… Yeah, I find it really hard to conform to “society’s rules” haha. BUT, the majority of people (I think) are still living by their parents standards for the most part and it will take a while (unfortunately and again, I think) for it to become a norm.

  • dwg
    5 years ago

    MS I like having the rug pulled from beneath your nuts for us boys. We endure, all of us MS’rs have to. There is that feeling of loss which we can’t recover but, endure we must. The plans I once had for my life are a bleep of a thought. Hope, life is filled with discomforts, find your joy reguardless how simple it may be. Find that joy

  • Matt Allen G author
    5 years ago

    Well if I have learned one thing it’s that fate doesn’t care about plans. You make them, life takes a turn, plans don’t work out, and you re-plan accordingly. I had a plan A,B, and C when I cam out to Colorado but life through a factor at me that made all those equations fail so once again, I am re-planning. Thanks to MS – that is pretty much a regular thing now haha…

  • Devin Garlit moderator
    5 years ago

    Well said. Probably not enough of these type articles out there. Being unable to work and be the main source of income really brings on some feelings of shame, obviously it shouldn’t, but it does regardless. Probably the biggest thing that gets me is not being able to do stuff like carrying the heavier objects or getting ahead to open doors. Again, things that we’ve just been brought up with as the things you do to be a man. It’s tough.

  • Matt Allen G author
    5 years ago

    I agree. When you have to ask your girlfriend to carry the heavy stuff so you can carry the lighter stuff, that hurts the pride especially when she is struggling with something you could have easily done before MS.

  • Jorge Castillo
    5 years ago

    I read the article and it’s probably true in some cases, I wonder what is the statistical breakup.I probably fall into the exception category; you know with a nursing, and counseling background. I think this article is imperative because regardless of our challenge, you gotta deal with your feelings to really understand, accept it, own it, become empowered and continue the journey. I too always 2 try 2 help and here is my Youtube channel address
    Respectfully, a fellow MSER
    https://www.youtube.com/channel/UCw0ZG6Bm8-vh91PnFgjgwkw

  • Matt Allen G author
    5 years ago

    Yes, there are always exceptions to every rule or statement, if there wasn’t, I would not have wrote this right haha? But yeah I think you hit an important point; Dealing with your own emotions in life is hard enough as it is but then adding an MS diagnosis to the mix? It’s very difficult, for ALL, but stereotypically speaking, us guys are not as good about talking of our emotions haha…

  • Kim Dolce moderator
    5 years ago

    Is it okay if I enter the man cave, Darrell and Matt? You’ve got such a good thing goin’ on I didn’t want to spoil it 🙂

    Just wanted to say bravo, Matt, for all that you touched on and especially the manner in which you did it. I’ll light a sparkler just outside the cave entrance in honor of the occasion. The talking thing deserves so much more illumination, I’m grateful that you have addressed it in your premiere MS.net blog.

    Here’s to many more. –Kim

  • Matt Allen G author
    5 years ago

    Hey no restrictions here haha! Thank you, maybe the fact that I have spent most my teen and adult life in some sort of relationship with a female actually taught me a thing or two about the importance of communication haha :p But seriously, no one can help you if they don’t know you need help and since telepathy is not so common these days, verbal communication seems to be the best way of letting them know!

  • Darrell
    5 years ago

    Nice post, Matt. I’m a guy and your right…I don’t talk much. I was diagnosed at 30, right in the middle of my engineering career with Exxon. I stopped driving in ’04 and full time work in ’93 and part time work in ’06. I volunteer 1 day/week at a medical library at the hospital where my wife works. My short career at least provided a good financial foundation. My wife is the bread winner now as a physical therapist. My job now is to take care of the home front,cook meals and provide as much support as I can to my wife. The 2 kids are all grown and married. I stopped taking Avonex shots 2 years ago and am off all ms drugs. I go to an MS clinic 1/year for any rehab. Where I am at the SPMS stage, rehab, if any, is probably what my story will be. I can’t complain. The last time I was treated for a “flare-up” was back in ’03. Oh, things are harder, but manageable. My wife bought me some forearm crutches, which are great on “shopping” trips! Well, I guess I’m all talked out! See ya.

  • Matt Allen G author
    5 years ago

    Hi Darrell, sorry to hear about your career’s short length but if your like me, life is all about QUALITY not QUANTITY. And hey, your giving back to society more than the MAJORITY of this country so for that alone I would feel proud. It’s amazing what a simple smile towards someone can do for their life! Seriously, as someone who has lived with depression most of my life, I can honestly say the kindness of a stranger goes a long ways! Good to hear from yah! Keep on keepin’ on!

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