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?
My experience living as a male with MS
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 course, 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.
Issues that affect males with MS
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 breadwinner 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.
Lack of physical strength
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.
Bladder, bowel, and sexual issues
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”.
Let's start the conversation
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!
Have you ever heard someone say the following: