Finding Connection in our Men’s National MS Group

Living with MS can feel isolating, and some men don’t always feel like they have a space to openly share their experiences. Our new Men’s National MS Group has changed that by creating an online community where men (18+) living with MS can connect, talk openly, and support each other through the ups and downs in life. Peer-led and confidential, the group offers a judgement-free space to listen, share, and build connections with others who truly understand life with MS.

In this blog, we hear from Terry and Brent, facilitators of the group, who open up about their own journeys with MS, how this online community has changed their lives, and how they hope to create a space where men from the MS community can connect.

Terry’s Story 

“My MS journey started with a diagnosis in 2008, but looking back, I had symptoms for years before. Life was a whirlwind. One moment I was living life to the fullest, and the next I was facing a new reality. Dealing with an invisible illness was tough, and I struggled with feeling like I had to hide it. As my symptoms progressed and my mobility changed, I made a bold choice: to start over in a new city – where I could be myself without judgement. It wasn’t easy. It took time, self-care, and patience. But today, I stand in a place where I feel confident in my abilities and experience. I've learned to respect my body and its limitations, and I'm grateful for the perspective MS has given me. 

I've been involved with other MS support groups over the years, both as a participant and facilitator. I always felt a strong sense of purpose to share my journey and support others facing similar challenges.

When MS Canada asked me to help get the online Men’s National MS Group started, I couldn't say no. The men’s group resonated with me because men can face unique – and often unspoken - challenges when living with chronic illness. There’s a real need for spaces where men can open up, connect, share, and support one another. The response has been fantastic. Every month, men from across the country join the group and find a space where they can be themselves, feel heard, and connect with others who truly understand what it's like to live with MS. 

For someone who’s never attended, you can expect a warm and supportive environment. Our facilitators, including myself, have lived with MS for years, so we bring a unique perspective and understanding to the group. There's no judgement and no pressure to give advice. The group is a place where men can feel safe to express themselves freely or just sit back and listen. 

Creating a welcoming space is about trust. We avoid giving advice, which can sometimes feel judgmental. Conversations cover a wide range of topics, from personal challenges to structured discussions. No matter the topic, discussions are organic, honest, and meaningful. This flexibility helps men tackle whatever is on their minds and hearts.

Being part of this group gives men a sense of belonging and community that's incredibly valuable. Knowing that others are experiencing similar challenges can be a huge relief and a source of comfort. Men with MS often face challenges that aren't openly discussed. One of the biggest hurdles is the stigma around vulnerability. Men may feel they need to appear strong, and admitting struggles could feel like a weakness. There's also a fear of being judged or misunderstood. Having a safe space like our group makes all the difference. 

If someone’s unsure about joining, I'd say give it a try. You can join without any pressure to participate or share more than you're comfortable with. You don't even need to have your video on.  This is a space for relaxation and support, not stress or pressure. Everyone's welcome.”

Brent’s Story 

“In January 2021, my only child was born. Just a few months later, in May, I woke up blind in my right eye and my life changed forever. I ended up leaving my job because the confusion and stress of what was happening in my life was too distracting. I took the rest of 2021 to try to figure out what was happening inside me. 

Fast forward to 2022, I joined MS Walk as a committee member, and it changed my life once again. From there, I wanted to learn and help in the MS community as much as I could. I met some amazing people from MS Canada who helped me get involved in various roles. I'm now an MS Ambassador, Peer 1:1 Support volunteer, committee member, and facilitate two separate support groups.

I’d already facilitated a small group in Alberta, so when I was approached about the Men’s National MS Group, I jumped at the opportunity. I saw a need for a men’s group and wanted to be there for those who need a space to talk or listen. So far, the participation has been more than we could have hoped for. 

What makes this group different is that it's online-only and completely flexible. Participants can talk and engage or just listen and learn. Since it's a brand-new group, it's very dynamic, with a wide range of conversations and participants sharing their experiences of living with MS. 

Men can sometimes be closed off about their emotions and how they are feeling inside. Having a dedicated safe space specifically with other men living with the same disease can really help people open up. So far, the main topics have been about living with MS day-to-day and sharing group members’ journeys from when they were first diagnosed to where they are today. Of course, there’s also casual conversation like sports, weather, and video games, and that can lead to some fantastic discussions that help someone open up.

Personally, the group is incredibly rewarding. Being able to help bring a community together, see others share their stories, and help those around them is why I do it. You never know when one story or conversation may impact someone’s life in a positive way. Living with MS can be isolating, but in this group, you feel seen and understood. 

To any man living with MS who's unsure about joining, I'd say, Come and just listen. You have nothing to lose by joining and absorbing the conversation. You never know when you might be impacted by a story or conversation. And when you're ready, we'll be ready to hear from you in a judgement-free environment. 

This group is still in its early stages, but I know the impact it’s made already will help men going forward find a place to be heard.” 

The Men’s National MS Group meets online on the last Wednesday of every month from 7- 8:30 PM ET.  

To learn more or sign up, visit our website or contact the MS Knowledge Network at 1-844-859-6789 or msnavigators@mscanada.ca.