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The Silent Minority: Men with MS

The results of our most recent “MS In America” survey highlighted some of the differences between men and women that suffer from Multiple Sclerosis. As a man who’s lived with MS for nearly two decades, it’s actually a bit refreshing to see the gender differences highlighted. While it’s never really pleasant to think that we have some different issues than women, it is comforting to see it recognized. Being the minority group of the disease, we don’t typically see a lot of information pertaining specifically to us. Along with that, recently, our Facebook page asked our followers what they’d like to read/hear more about and I was happy to see that there were a number of men saying they’d like to see more regarding issues that are specific to our gender. So, with all of that in mind, I’m hoping to begin talking more about our disease’s effect on us, specifically because of our gender. While a number of men did comment on that question and did take the anonymous survey, I’m pretty confident, from my own life experiences, that there were many men that remained silent as well. It’s that silence I want to discuss today.

The strong, silent type

If you have been around these parts for a bit, you know that I am far from silent and will pretty much discuss anything and everything regarding my life with Multiple Sclerosis. I haven’t always been that way though. I was raised in a time where being the “strong, silent type” was the preferred way that a man should act. You’re supposed to be quietly strong and confident, not show weakness, and not complain. Times are certainly changing though, and men are opening up more than ever. While there is progress there, that progress is slow. It’s going to take considerable time for men, particularly in my age range (early 40’s), to feel like they can be completely out in the open, particularly when it comes to an area that highlights our greatest vulnerability, our illness.

Vulnerability

That’s really the key here, right? Our illness makes us vulnerable. Our survey results even hinted that men don’t have as good an outlook on life when diagnosed. I admit, when I was young, even around the time I was diagnosed, I certainly considered myself a bit of tough guy, always ready to “go”, and got into more than my share of stupid scraps trying to prove it. When you’re always the tough guy, getting hit with an MS diagnosis is a bit of a blow. It was a punch I never saw coming and it laid me out. It became apparent that I was in for a different kind of fight. That didn’t stop the way I acted though.

I started to act even tougher after my MS diagnosis

In many ways, I think I started to act even tougher, like everything was fine and that my disease was “nothing”. Inside though, I was scared sh*tless. I grew up with a grandfather who’d had the disease, I’d seen what it could do. With my grandfather in their minds, my family was devastated, which really made me double down on that “everything is fine” facade. Vulnerability was not something I was going to display, particularly to those close to me. I didn’t want anyone to worry about me. Even if it was fake at first, in those early years, I eventually began to believe that toughness. In some ways, being the strong, silent type was helpful for me back then. At least, it was helpful to me early in my diagnosis and I’m confident it was helpful to my family too, again, only at the beginning.

The effects of silence

While being that tough, strong, silent type may have been helpful at first, particularly to those around me, it was not a sustainable long term strategy. I have no doubt, that trying to gut things out and not discuss them properly had adverse effects on my relationships and my health. Not properly reporting symptoms, skipping medication, thinking I didn’t need various therapies, not explaining why I’m irritable (and in men, depression often presents itself as irritability when it first comes on) or why I didn’t or couldn’t have sex, etc. There are so many problems that occur when you keep aspects of this disease to yourself. I’ve learned a lot of that, the hard way. I’m in my early 40s, single, disabled, and I’ve left a long trail of relationships (family, friends, and romantic partners) in my wake.

Stop suffering in silence

It’s frustrating to think about how my life might have been different, if only I had been more open about my illness both with those I loved and my doctors. It took me a long time to realize that showing some vulnerability doesn’t make you any less of a tough guy, it makes you more so. I often felt like I was protecting those I cared about by not being more open about my illness; years later, I realize that was foolish. You don’t have to put your disease on display, but you should understand that you can talk to your loved ones, you should talk to your doctor, and there are groups and websites (like this one) where you can “get it out” and get advice from people who have been in your shoes.

Other topics around men and MS?

As always, I’d love to hear your thoughts. This isn’t every man’s experience, but it’s mine, and I know from others I’ve talked to, that I’m not alone. Are there other male-specific topics you want to hear or talk about? Please let me know! If you don’t want to comment here, feel free to message me.

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

Devin

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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

  • Rodger
    1 month ago

    I like your article Devin it reads like you are a good man. I’m sorry you have lost your wife. I still have mine and we have been together since 1980 and been through hell and back,
    She has been through a bad start to her life. Her farther and friends abused her from birth to 22 years. He (her farther) was a lead of a coven and used her as prostate, and when she was old enough as a means as a baby production and she was raped almost regulate and that has caused her bad memories.
    I found this out in 1990 and didn’t know much about this. In 1999 I was diagnosed with MS and that was another scale to meet. But we had a good life up to then and I tried to deal with this mess to keep with her and this mess and am still trying but it’s more than a challenge for me.
    I still love her and she knows that and tries to help me when she can. I have got help from a company called Florence Knightage and they have people that help with disable people. I have a couple to help me shower and get dressed ad at night get in my night ware. This has helped us well and I can start to work on getting us more closer.

  • Devin Garlit moderator author
    1 month ago

    Thank you for sharing @Rodger

  • joshremus
    1 month ago

    Great article, I had a lot of struggles with wanting to be self-reliant (probably the German in me) until I got incredibly sick with an unrelated disease that almost finished me off.

    Months in the hospital, months in “rehabilitation” (I.E. nursing home) taught me humble fast.

    In the hospital I was hallucinating for the first half but after that it was all aides cleaning, wiping, etc… humiliating at first, but gratitude in the end.

    Now that I’ve totally moved past that (almost 10 years ago) – I’ve reinvented my life. But the humble stayed with me.

    I still like to do things myself but have learned that asking for help is not terrible. And when someone offers to help you, think about it twice before you say no.

    You may be stealing THEIR blessing from them. Their desire to help is an offer from them to bless you.

    So accept it graciously when you can. They bless you & they feel blessed by helping.

  • Evergrain
    1 month ago

    joshremus , Your absolutely right. Ms is an odd desease, it’s literally all in your head ( well your spine as well). You can have it and never know it unless you get a brain mri. Have no symptoms at all. Or . . ; be whealchair bound and have speach problems like Selma Blair who I admire. It has nothing to do with stardom but that even with her struggles she still continues to work. I do not know her but her article makes me believe that she will not let Ms define her.

    joshremus, I am a caregiver and there are 3 people who have Ms in my house. At first it was a in your face reminder that this is where I am headed. I Know what they are thinking. Your limbs are numb as if your paralyzed yet you can feel everything. But you can’t tell your body to move.

    I tell you the truth. I say to my residents that I only pray that someone honest will take care of me when the time comes. I take joy in being there for them.

  • Devin Garlit moderator author
    1 month ago

    Thank you @joshremus, and I think you nailed it about accepting help, learning how to accept help and not let it make you feel bad is such an important, but incredibly hard, thing to learn!

  • Kickmsbutt
    1 month ago

    This story is like reading my life’s story since 2008. These feelings that were mentioned are oh so true!
    I too was under the wrong impression that being the “strong, silent guy” was helping me or those that I love. Today I talk about MS to anyone and everyone that asks about my major limp or why I choose not to go out and drink with the fellas.
    My wife and kids are my support, but I’m also theirs.
    I work in a very macho field, and used to be the “macho” guy, but have grown in so many ways over the last 11 years. I’m a much better, stronger man than I ever was before MS came along.

  • Devin Garlit moderator author
    1 month ago

    Thanks so much @Kickmsbutt, when you have this illness a long time, like you and I have, after a while, you really do learn what toughness is, and surviving with this disease is the perfect example of toughness!

  • Doug0461
    1 month ago

    Dx 2003, stuck inside a glass bubble and sitting quietly in the corner where they put me I was beating on the inside screaming don’t throw me away yet not a word came out. Lost my class 1 licence, my career, and via anger and attitude my marriage faded away. Arragance and attitude fueled my MS and it tore down everything I built. 3 years living off just over $10500 anually teaches a person just what’s really needed, like how to be humble. Asking for help or showing your soft underbelly was humiliating but what the heck – here I am. My only fear now is when optic neuritis takes my vision so I definitly smile alot and try not to allow stress rule me. I don’t hate me, my ex, or MS as that fosters anguish. Finally on an income that keeps me healthy but I’d still rather work – I accept those doors that were closed because the doors that I opened were more for who I am today. I can safely say almost 30 years MS has been my unwanted friend but I ignore him. From almost a wheelchair to a cane we push forth with a real positive outlook, I have yet to take any modified meds for this disease other then my own understanding and therapies, I have managed to close down aspects like verigo. All in all, got Doug and I’ll do my best to keep him safe.

  • Devin Garlit moderator author
    1 month ago

    Thank so much @Doug0461, appreciate you sharing your story!

  • BobbyC
    1 month ago

    In the past (and, despite legislation meant to discourage the practice in present times) being known as “disabled” can make it challenging to get good employment. As men have commonly considered themselves to be the family “breadwinner”. Although my father, a successful supervisor in sales and, later, government, refused to be examined by a neurologist for the many symptom he had that are common to MS, I think because he did not want to be called “disabled”.

  • Devin Garlit moderator author
    1 month ago

    Thank you @BobbyC, you’re very right! Even today, there is such a huge amount of discrimination that occurs when the word “disabled” is used. It also absolutely stops folks from getting the care they need.

  • sirbear62
    1 month ago

    The marine corps found this disease in 1986 8.5 weeks into bootcamp and sent me home without telling me why. Hereditary spasticit paraperisis came on July 2011. It is the disant relative of MS. It is so unknown to the doctors in the world. 16 hours a week at the YMCA has kept me out of a wheelchair sofar.

  • Devin Garlit moderator author
    1 month ago

    Thank you @sirbear62, appreciate you sharing that and happy to hear you’ve been fighting the good fight!

  • Rodger
    1 month ago

    Thanks Devin it’s good to read from a ‘mans’ perspective. I have had PPMS for 20 years and had income protection for 15 of those years, but when I turned 60 it stopped and for the last 5 years I had to endure no income. I am now receiving the retirement pay which now seems quite weird.

  • Devin Garlit moderator author
    1 month ago

    Thank you @Rodger!

  • Evergrain
    1 month ago

    Ms is often called the ” convenience desease “. I learned that term from the Ms Society. Along with that game *is it better to have ms or ^ insert a desease here^. I look fine until someone ask us to help them move. Then we tell them we can’t because we have Ms; how convenient.

    When we have a lot to do and we have to rest 15 minutes later and have to sit down I feel lazy. My wife says it’s ok but in my heart I feel like i’m just being lazy. Im a man and i’m the one stuck in the chair and she’s putting up the christmas lights.

    If I push myself i’ll end up falling so there’s that. I get angry at myself, yell at my legs because they won’t do what I want them to. Then the anger pours out into your life. I believe thats why elderly people are labeled as being cranky. It’s not because they’re mean. It’s because in they’re heads they are 18 but their body isn’t.

    I will tell people there is hope. I’m 41, I was diagnosed at 33. But i had symptoms 2 years prior. 6 years ago I walked with a cane, Ms hit me so hard that 3 months after i was diagnosed I lost my job, was tested and flew through the process of getting disability from ssdi. I was hit hard but despite what the world says about this desease, that there’s no hope of getting better.

    I have improved and I haven’t touched a cane in 4 years. I accept reality but I won’t let my ms take over. Ms is something you have. But it’s definitely not who you are.

    We are men! We beat our chest and growl in the night. Lol

    We are men, we are scared. We don’t want to go into that gentle good night as Dylan Thomas so elegantly wrote. Never be labled.

  • Devin Garlit moderator author
    1 month ago

    Thank you @Evergrain, those tasks, like putting up Christmas lights, shoveling snow, mowing the lawn etc have always wrecked me mentally. When I was married and my wife had to do those things, I’d become very depressed. It ate me up inside and eventually my marriage ended. People really don’t understanding how awful those situations can feel for a man.

    I touched on that some more a few years back: https://multiplesclerosis.net/living-with-ms/dreading-snow-man-ms/

  • Evergrain
    1 month ago

    Jeffie, your job constantly reminds you of the end. I can understand that. Im a caregiver, lol, and I have ms. I tell my residents it’s like the blind leading the blind. Statistically im 99.99999998% gonna end up on the other side of my job. I tell my coworkers they’ll be wiping my butt someday. I can easily get depressed on a daily basis.

    I guess im paying it foward but I tell my wife if I get bad enough that she cant help me anymore, instead of a home she should push me out of an airplane.

    I only laugh now, but soon enough im not going to find that funny.

  • Meets
    1 month ago

    Overall not a happy camper and tired of feeling this way and struggling all the time. Have had it for 15 years now

  • Meets
    1 month ago

    I don’t want to say that I have MS as it could affect the kids. People view you differently if you have such a problem disease. It is not that I am not Strong but frustrated as this disease puts so many limitations on you ?

  • Devin Garlit moderator author
    1 month ago

    Thank you @Meets, kids do make it a little more complicated, for sure, however, I do think if they are educated on the matters, they can see it as a demonstration of strength.

  • mseverchanging
    1 month ago

    Devin
    Another great article. My blog (outside link) Everchangingms.blogspot.com
    I have not touched the subject in the reality form you just have. One med they put me on did help for MS, but they changed a formulation of this medicine, and now only works 18 out of 24 hours. Depression effects everyone is what I’ve found.
    Thanks for the insights.
    JoeY

  • Devin Garlit moderator author
    1 month ago

    Thanks so much @mseverchanging!

  • ben
    1 month ago

    I am with you on the depression part. Hate complaining about things because I am supposed to be the head of the house and have always been the strong one. Really don’t like failing and worry that one day I will be a burden. Something I think we all think about in one aspect or another. I have only told a few people that I have MS and try not to show it. Luckily enough I am one of the few that if you didn’t know I have it you probably wouldn’t even think as much. I am in my lower 40’s and have been diagnosed for almost 6 years now. Granted I am sure I am like most and have come to realize that I have had it for much longer just never was tested.

  • Devin Garlit moderator author
    1 month ago

    Thank you @ben, the concern about being a burden is always in the back of my head. While no one wants to be a burden, I think that fear is magnified when you are the head of the house and the provider. Those concerns can eat you up if you let them, so I think it’s extra important for folks like us to talk to each other about it. Just venting our concerns, to the right people, can be incredibly helpful.

  • Kim Dolce moderator
    1 month ago

    Devin, I loved this article and I want more men to write about what it feels like to be a man with MS.

    Your words made me recall my father in his final years with heart disease. He was so “difficult,” meaning that he wouldn’t let us take care of him in certain ways that he really needed and denied our suggestions of hiring aides and housekeepers (he lived alone in an apartment).

    The main takeaway is that if a man is gonna act like a tough guy while his loved ones can plainly see he is suffering and in what ways, it is heart-wrenching and frustrating for them to be denied the opportunity to ease his pain. We helped him only to the extent that he would let us, we had no choice. Nobody can force a grown man to make the “right” decisions for himself. I’m still mad at him about some of these issues 11 years after his death.

    So please, guys, let your people know what you’re feeling and allow them to help you. That makes it easier for all involved.

  • jfreiwald
    1 month ago

    I am 47, diagnosed 14 years ago. I went on disability, convinced my self “I can handle it”, and went back to work full time. I am an undertaker. I retrieve dead bodies, and bring them back to the mortuary. It is very grueling work. I am the owners “right hand man”. My RRMS is getting to me, and I don’t know how to tell my boss. I don’t want to seem “weak”, or that I can’t handle the job.. very frustrating…

  • jfreiwald
    1 month ago

    UPDATE: I have since told my boss of my illness. He said he would never have known because I don’t act or look sick. He said when I have an “off” day, let him know, and he’ll “Lighten my load”. VERY cool! I know I have a great boss, as many others would not be so understanding..

  • Devin Garlit moderator author
    1 month ago

    Thank you @jfreiwald, I understand the frustration. However, as they say, times are changing, people are becoming more knowledgeable and understanding. While we default to thinking the worse, perhaps your boss will be understanding, perhaps he’ll see the truth, that you’ve been incredibly strong for doing everything you’ve been doing while still having this illness, that’s impressive.

  • JimmyMac
    1 month ago

    Another very interesting and well written article. I agree the strong silent act can be harmful in the long run. Unfortunately or fortunately, depending on your perspective, I’m rarely the silent type though I rarely reveal how I’m feeling though I’m cheerie. This summer I found this way of being can be harmful. I actually ended up in the hospital for the entire month of July, in part, because of my “don’t worry about me, I’m fine” attitude. It was good to read this article which I read to mean take care of what ails you without worrying who you may create work for. I didn’t read we should whine about our problems but it’s important we tell someone what our problems are. I’m saying talking like Joe “Just the facts” Friday because you’ll never know when what you say leads to catching a health risk for you. I didn’t and it not only cost me but others around me. The very thing I wanted to avoid happening, happened in spades. That’s why your article is so important!!

  • Devin Garlit moderator author
    1 month ago

    Thank you @JimmyMac, exactly, there are cases where we may feel like we are whining, but confronting what ails us and making it known isn’t whining, it’s doing what you need to do to keep going.

  • Dimitri
    1 month ago

    Interesting!!
    I was unaware that depression could express itself differently in men and women.

    I totally get what your saying about complaining. I for one hate complaining. My mind set is that it is what it is, now just shut up and deal with reality.

  • Devin Garlit moderator author
    1 month ago

    Thanks @Dimitri, I think our problems come from when we consider ourselves complaining, but in reality, we are just confronting an important issue. Nothing wrong with that.

  • Dimitri
    1 month ago

    Haha.

    That sounds like me. I’ve always had issues about coming off as being rude or pushy.

  • markt
    1 month ago

    Devin
    well again your speaking my history, we have some differences but still, I was diagnosed a lot later than you (50) im older and have had it for only 9 years now but…
    Strong and silent
    this part totally me I even lied to my dr and he thought I was doing real good but the truth was that I was not doing good at all but I hid it all from everyone as I did not want to worry my wife or family I never told anyone at work and I just pushed thru.
    I did things soon after being diagnosed just to prove I could I did a warrior dash and well lots of other things…
    sustainable long term strategy that’s a funny statement that lately I have realized that my old way of silent and strong was not going to do that at all
    I finally told my boss a few months ago
    that was the best day I have had in a long time it was a lot off my shoulders
    Im not saying im good at this being open about what im going thru but its a start for me
    sustainable long term strategy that’s what I need to think about
    Depression is a large thing for me as I do feel guilty for not being able to do a lot of things with my family or social things and this I still deal with almost daily
    This site is the best thing I have found for me
    And I am now talking to my Dr about what’s really going on and im not hiding things as much from my family
    your a big part of this for me as you write what I am going thru and its great to know others that are almost the same in this ms thing
    well
    thanks again
    Mark

  • Devin Garlit moderator author
    1 month ago

    Thank so much @markt, I’m glad to be part of this with you. The depression and guilt still gnaws at me, it’s something I think most of us will have to keep fighting as long as we have the disease. We can get through this though, we have to keep reminding ourselves that what’s happened to us is OK, it’s no ones fault, and it in no way makes us less of a man.

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