I Have MS and I’m a Man. Here’s Why That Matters

Men face different societal expectations than women which affect our life with MS.

Most people don’t really think about the effects that gender can have on one’s life with a chronic disease. But as a man who has been living with multiple sclerosis (MS) for over two decades, I can tell you that my gender has created some unique challenges — from diagnosis to managing symptoms, relationships, and work.

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Men in the minority

I didn’t realize before being diagnosed with MS that men are in the minority when it comes to this disease (with women three times more likely to be diagnosed). You would think that being in the minority, in this case, might not be an issue.

But it’s affected me in several ways, most notably when I was trying to get a diagnosis to explain why my legs were consistently numb and sometimes unusable. At least one doctor said my symptoms resembled MS but that because I was a man, it was unlikely to be that.

When I did finally get a diagnosis, I attempted to attend several support groups at the urging of friends and family. In every group I attended, I was the only man. While that might not have been an issue for others, as a man in my early 20s, I didn’t feel comfortable in those situations.

I felt like I had less common ground — not only with everyone I knew because I had a chronic illness but also with others who had the disease, who were all women.

It kept me from getting some emotional help I needed, not to mention learning more about my disease from others who had actually experienced it.

Staying silent

I grew up in a culture when being the “strong, silent type” was expected of men. I never had any male role models, either in entertainment or in my personal life, who expressed how they felt or openly shared anything that was going wrong with them.

Suffering in silence was part of being a man. Men were supposed to be tough and not let things like feelings or pain bother them — at least that’s what I thought.

I remember back in Little League. If you got hit by a pitch, the unwritten rule was that you never rub the area. You never let the players on the other team see that you were hurt. That kind of attitude sticks with you.

Having grown up with these mindsets made speaking up about the emotional toll of my disease difficult.

But the problems extended beyond that. I look back now and realize I had physical symptoms that I either downplayed or simply didn’t mention at all. This was especially true of pain. For the longest time, no matter how bad the burning nerve pain I experienced in my legs became, I simply would not mention it.

Men don’t let things like pain slow them down, right?

Even today, knowing all that I know, I still tend to downplay my pain levels when talking to just about anyone. I don’t even realize I’m doing it most of the time. That’s a testament to how ingrained these attitudes are in me.

I am far from alone in this: Research in 2012 illustrated that men “tend to overrate their health, concealing their health problems behind the ‘tough men’ stereotype.”

It’s hard to say what kind of long-term effects this mindset has had, but maybe if I had been more forthcoming about my symptoms, I’d have had medications changed or new MRIs ordered sooner.

Maybe I wouldn’t even be disabled today if I had been more open up front.

A worse prognosis

While men may be less likely to develop MS, when we do get it, men can have a worse prognosis than women.

Men tend to become more disabled more quickly than women with MS. Men with MS also have more issues with cognitive dysfunction.

While it’s not known exactly why men have these differences, there is at least some speculation that men’s tendency to delay seeking help may lead to delays in diagnosis and treatment.

Adding to a worse overall experience with the disease is the fact that men often require different types of support than women. It turns out my experience with support groups is not uncommon among men, as such groups may not foster the same sense of belonging for men as they do for women.

Mental health matters

MS can lead to mental health challenges for both women and men, and I’ve definitely experienced them.

While it may seem trivial to some people, I’ve had moments where my significant other would have to mow the lawn or shovel snow because I couldn’t physically do it. Not being able to do things that I always perceived as a “man’s responsibility” has done a number on me emotionally at times.

The greatest hit, though, was when I became disabled at just 35 years old. No longer being able to be “the man of the house” and the main breadwinner had a big effect on me.

Not being able to work made me feel like a failure — like I really didn’t have the right to exist because I wasn’t providing and serving a purpose.

Almost worse, I was also forced to be vulnerable, rely on others, and rely on Social Security Disability Insurance to survive. Losing my career to this disease is something that I still struggle with every single day. It makes me feel like less of a person and certainly like less of a man.

Relationship struggles

I’ve had some relationship difficulties in my life because of my illness. At times, I’ve had a very decreased libido, which has been difficult for some of my significant others to understand (men are supposed to crave sex all the time, right?).

I’ve come off as angry at times when I was trying to battle intense nerve pain but never wanted to let anyone know that.

I’ve seemed aloof and uncaring when I was really struggling with cognitive symptoms.

I’ve only recently started to become more open about when my symptoms are bothering me. As I’ve become more comfortable doing so, I’ve encountered many people who still expect me to bottle it all up.

The takeaway

Living as a man with MS means being part of a minority that faces unique challenges. We fight an uphill battle against the societal norms that have been ingrained in us from youth.

We also face a different prognosis, are more likely to develop cognitive difficulties, and have unique emotional needs when it comes to MS. It’s important to raise awareness of these differences so that we are better prepared to face them and receive the care we need.