Chronic Illness, Sharing Stories, and Vulnerability

A chronic illness community can be an essential wellness tool. It allows you to surround yourself with people who just get it. But it's not always easy to share your story - especially when you're not used to it. And in our experience at AnkylosingSpondylitis.net, we have seen many women openly sharing their stories in chronic illness communities, and sometimes fewer men.

We decided to ask our male advocates Jamie, Rick, René, and James H., about their comfort with sharing their chronic illness journey.

What has writing about your chronic illness, and being open about your journey, been like for you?

Jamie:

"The reason I took on this advocate role, despite not entirely understanding my own struggles with axial spondyloarthritis (AxSpA), is because my approach is if I can help one person with whatever they are going through by looking at my own experiences then it’s a success.

One thing I really want to mention is how much the hockey community, and the sports community as a whole, has improved with openness in discussing mental health. Sadly, it didn’t occur until after some men lost their lives to suicide and others came forward with stories about their struggles with substance use. Yet, today the community I’m proud to be a part of has really grown to support one another in this regard. Mental health is being built into aspects of hockey and it’s making the community stronger. My AxSpA challenges have resulted in my own struggles with depression and it’s something I’ve been very open with because (as I’ve written about) if I don’t, they worsen."

Rick:

"I am far more open [now]. I am delighted when Sheryl (my wife), who edits my posts, says she has discovered something new about me that, after 43 years, she never knew. In typical male fashion, I was not completely open with Sheryl about my feelings and frustrations. Writing, in general, has opened our relationship even more. It is also a way that I hope my grandchildren will get to know me one day...I tell people that chronic illness has made me a better husband, father, grandfather, neighbor, and a better man. It has opened my life to new experiences and feelings. I learn about myself as I write. I am fortunate that at 63, I still consider myself a work in progress. I am not certain many 63-year-old men can say that. I hope I will always be a work in progress. Otherwise, life will be so boring."

René:

"Opening up became like a spiritual journey for me. Talking about my struggles didn’t make me less of a man, it only made me stronger. And while sharing my experience the weight that I was carrying along all those years became less heavy. It was a step outside of my comfort zone but, that is the place where growth happens. And in a larger picture, I became a master of my own emotions, in a good way. Through connecting I was given the chance to release my old trauma. Which gave me a more positive feeling about my life in itself. All in all, I became more open as a person. Not feeling any shame. But it truly was something that didn’t come naturally to me and that I had to learn. But I am grateful for walking this path. And hopefully, I get to help to set an example for men to be more open about having a chronic illness."

James H.:

"I definitely feel a great deal more comfortable sharing my feelings and journey with AS nowadays but it has taken me a while to get here. When I was first diagnosed this was certainly not the case and I shut myself off from the world. I think this was due to a number of reasons but mainly because of the confusion around my diagnosis; I had a number of misdiagnoses and wasn't completely sure whether I really did have AS or not. I was tired of explaining my situation as the doctors kept changing their minds. I was also in a great deal of pain and unable to walk for so long that I was mentally and physically exhausted. I put all of my energy into finding ways to improve my condition rather than opening up about it.

The fantastic online community of other chronic illness warriors (albeit predominantly female) has inspired me to share my story, in the hope that it may help people out there come to terms with their condition and to show that it isn't all doom and gloom. I have also found posting about my experiences and feelings online to be very therapeutic. It’s helped me to get a lot of things off my chest, which I think is something that we men struggle to do in productive ways a lot of the time."