Where Are All The Male Patient Advocates At?
I have had the opportunity to attend a variety of health conferences over the last few years where I have connected with many amazing patient advocates. Yet, as I look around at my fellow colleagues and friends, I have realized that many of them are female (and there is nothing wrong with that!) and I think to myself, “Where are all the guys at?!”
As someone who grew up with a mom who had Huntington’s Disease (HD) and also tested positive for the condition, I understand the importance of peer support and finding role models or mentors who can guide you along your journey. I was able to have that with a guy in the HD space who today, is one of my good friends. He is someone I can receive guidance from, share experiences, and collaborate on ways to continue to support the health community.
More recently, I have connected with other male patient advocates across various health conditions. The one thing I have noticed about all of us is that we are open about our story and are okay being vulnerable. I know that, as men, we tend to feel like we have to be strong for others and showing emotions/feelings can be a sign of weakness. But that is completely false! It is a part of who you are, and more importantly, a part of your journey, which I’m confident can change the lives of so many others!
A few weeks ago, Our Odyssey held one of our young adult meet-ups in DC where 12 of us got together for a few hours to meet, network, and share experiences of what it is like living with a rare or chronic condition. We discussed how to not be defined by your condition, how much to disclose to friends and romantic partners, dating, self-advocating at the doctor’s office, among other important topics. One young adult even said, “It was a super cathartic experience getting to talk to other young adults who ‘get it,’ and learn more about their experiences.”
As you can see from the picture though, I was the only guy there, and although I was okay with it, I want to change that. As much as I enjoy building these connections with amazing female advocates like the ones above, I also want to help young male advocates get peer support and feel that sense of ‘normalcy’ that we all look for when dealing with a rare or chronic condition. Now is the time to get young male advocates more involved within the health space. Whether it is having them attend one of our meetups (in-person or virtual) or finding a mentor for them throughout their journey, we need to find ways to get men more involved.
I cannot do this alone. I need your help. I will be reaching out to the other male advocates in the health community that I know, but will lean on my fellow patient advocates and nonprofit leaders to help me with this.
Who’s in?
Seth is a motivated leader and patient advocate who is passionate about bringing his personal experience to better support the health community. His passion is driven by his mother’s 17-year battle with the rare, genetic disease known as Huntington’s Disease (HD). At the age of 20, Seth also tested positive for the disease and is a gene carrier. Over the years, Seth realized from his own personal experience that there were unmet needs of young adults impacted by a rare or chronic condition. Due to this, he co-founded Our Odyssey with the hope of bridging the gap and improving the quality of life for young adults. Seth has a masters in nonprofit management from DePaul University, and resides in Boston.