A few weeks ago, my cousin, Josh, said to me, “It’s so cool that you are open and have fun with your illness. Not many guys are like that,” and while I appreciated this comment in many ways, it also made me think about how opening up about my illness has improved my life in so many ways. AND how more guys need to open up, share their story, and help raise critical awareness for so many causes.
When I look at the advocacy for chronic illness, I have to say it’s pretty much all women (yes, there are some men out there, but I would say it’s most likely around 80% female and 20% male). There are so many illnesses and communities that can use a more prominent voice from the male perspective.
The problem is from a young age guys like me are taught not to discuss what should be private, and anything illness (or weakness) related falls into this category. Men are supposed to be reliable, fight through anything, and be rock-like at all times. Sadly, this couldn’t be farther from the truth for men who suffer from chronic illness.
We are reliable, we can fight through anything, and in many cases, we’re rocks which can deal with a tremendous amount, but we don’t share our stories the way we should be. I took a look at a great book by Lewis Howes called The Mask of Masculinity. It is more rooted in the mentality of men, and how men typically take the path of going through things alone for a variety of reasons.
This doesn’t need to be the case at all. For the longest time, I didn’t talk about ANY of my chronic illnesses, the challenges I faced, and what might be ahead for me. There were only a close few that I can probably count on one hand that knew what a typical day was like for me. It was hard because other than my family, I was on one of those paths. Going through everything alone because that is what I was taught by my father.
My father and I have a long history of butting heads and not getting along. He was ashamed of me in many ways, didn’t think I was even sick at times, and also guided me to make decisions that might not have been in my best interest when managing my health. But he comes from a different generation. One were you put your head down, grinding your teeth, and somehow fought through anything that came your way.
Finally, when I realized I was old enough to make my own decisions, I started to manage my illness the way I saw fit, and also shared my story with others around me more. A HUGE weight was lifted off my shoulders, and I realized I didn’t have anything to fear. I could share what I’ve been through, what I am going through, and what might be ahead with everyone I wanted. The best part was, it made it easier to deal with.
While I know that it is much easier to say than do, I can’t stress enough to any guy who is battling with a chronic illness to at least try and start to open up about it. There are a variety of ways that you can do this. One of the best ways is to join a Facebook group with others who suffer from the same illness. It’s incredible how quickly you can build an online network of friends who are going through the same thing. Before a guy knows it, he’s part of a community and realizes he isn’t along and doesn’t have to be.
One of my missions is to help as many patients with chronic illness as a possible fight for a better life and learn how to manage their day to day with all of the challenges that are faced. Another area I would love to improve is for men, just like me to share their story more. Put it out there for other men to see. Realize that none of us need to choose a path that men in prior generations might have taken, and create a support network which can help fight these difficult battles we all face daily.