The added problems of being a man with Multiple Sclerosis
So you go through the lengthy process of getting diagnosed with Multiple Sclerosis. You suffer through the MRIs, the spinal taps, blood work, and evoked potentials (a test to measure the electrical activity of the brain in response to stimulation). Your life has changed in so many ways and you start wondering how and why? Then you come across an interesting statistic: women get MS at a rate of 3 to 1 compared to men. As a young guy, I’m ashamed to say, that almost felt like an extra slap in the face. Did I get a woman’s disease? Imagine being a testosterone-filled 22 year old male and hearing that! I admit, at that age, it felt a bit embarrassing. Statistics aside, you’d think that it really wouldn’t make a difference in your day-to-day life. Who cares if I somehow “beat the odds” and got the disease, men and women still fight the disease the same way, it shouldn’t matter, the experience should be the same, right? Well, I think there are some challenges that men encounter that women don’t. I don’t think these challenges are worse, just different, and don’t get talked about much so I thought I’d bring them up.
For many men with MS, we’ve grown up in a society where we have certain expectations put upon us. A man should be the provider, the protector, be strong, be emotionless, etc. These are of course all very sexist notions; however, sadly they are still values ingrained in a large part of our society. So when you suddenly can’t be the provider, can’t be the strongest, and get overwhelmed with emotions seemingly constantly, it can be very hard to deal with. Even if you don’t buy into all those gender expectations, many people do. From books to TV to even people we’ve known as we grow up, we can’t help but see that there is a certain way men are “supposed” to act.
Many times, it’s the small simple things in life that can cause the greatest feelings of shame. Having my wife have to hold the door open for me, carry the groceries in from the car, and even take the trash out. In the past, I’ve had to have my fiancée mow the lawn for me because it was too hot out. All of these small things can really start to add up and make me feel down. And that’s just if I am the only person that sees them, if someone else bears witness to these small acts, then I feel doubly ashamed. The invisible nature of the disease is so often its worst trait. I look lazy, not disabled. Sometimes, just being seen by my wife’s side with a cane makes me embarrassed. I think crazy things, like “I don’t have an honorable war injury, I have a disease for girls”. Again, I’m an educated, forward-thinking man, I know logically I should not feel this way.
Then there is the big issue for many men with MS, suddenly, you find yourself no longer the “breadwinner”. Perhaps nothing attacks a man’s ingrained sense of being the provider more then that. Now I’ve always been encouraging of my wife or anyone’s wife making more. Hey, we’re all in this together, let’s both make a lot! That was until I ended up on disability and had what was a very great salary slashed dramatically. That alone can cause you to have issues of feeling like an unsuccessful man, but it’s doubled when you get married and feel like you should be the provider.
On top of that crush that I feel by not being the provider anymore, I also get some guilt by not being able to work. What comes via disability is meager, particularly with skyrocketing medical costs, and while I know that I’ve worked my whole life and paid taxes into the system, I still have a tremendous issue with myself for not being able to work and contribute. There are people that definitely scam disability, but there are many of us that hate being on it and would do anything to get off of it. I was raised with a great work ethic and that made me very successful in life, but right now, it can be crushing.
Men with MS also have another interesting issue. With so many more women than men getting the disease, seeking support and people that understand exactly what you are going through can be problematic. This also gets compounded by many men not wanting to seek any help and not wanting to talk about their issues with others (I was once one of those guys). Back to those societal norms, it’s not a very “manly” thing to seek help or talk about your problems. Occasionally, you will see a male support group here or there, but in my experience, the turnover can be high. One of the greatest sources of comfort that a support group can provide, in my opinion, is to make you not feel alone. It can be very encouraging to hear that other people are dealing with the same issues as you. We with MS have a saying, “You don’t get it, until you get it”. It’s a bizarre disease that no one understands and that attacks everyone so differently. It can also be so very hard to explain to people that don’t experience it. That’s why it’s so very important to seek out those that have it as well. There is just something so comforting in knowing that someone else actually understands.
Many times, the end result of all of this is depression. I’ve talked to other men that have Multiple Sclerosis and it’s a common problem. We’ve grown up in a world that is still very much sexist and even if we don’t agree with those societal expectations, we still have to bear the crushing weight of not being able to meet them. Often, the pain of not being able to “man up” can be worse than the awful, burning nerve pain we get from the disease. As I so often preach in these articles, the only real way to battle this is the education of others. Help people to understand the disease and to not make a quick judgment. Everyone is fighting an invisible battle, that guy you see, who you think is being lazy or being a bad husband, may actually have MS.
Would it have been helpful to hear from others and their experiences when you were beginning your MS journey?
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