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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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