He explains why expressing the hard stuff matters: "It made me realize how important communication and support are."
Actor and comedian Will Forte is used to making people laugh for a living—you may know him best for his hilarious characters on Saturday Night Live and the action-comedy MacGruber. But when it came time to have a more serious health discussion within his family, he learned how difficult it can be to talk about chronic diseases.
Both Forte’s brother-in-law and late father-in-law were diagnosed with Huntington’s disease, a genetic neurological disorder that affects nerve cells in the brain, causing involuntary movements among other symptoms. Though Forte supported his family from the start, sometimes he would struggle with how and when to have a conversation about it. It wasn’t until he and his brother-in-law, Doug Modling, attended Huntington’s advocacy events that he discovered the importance of candid communication—both between people who have Huntington’s and the families supporting them.
Because Huntington’s disease—sometimes referred to as simply HD—is rare, it can be difficult for people living with the disorder to find and connect with people that have experienced it first-hand. Now, both Forte and Modling are encouraging more conversations through HonestlyHD, an awareness organization for Huntington’s disease and the challenges it presents.
In a video from HonestlyHD.com, Modling says, “I started focusing on advocacy and awareness on Huntington’s disease because I wish I had someone that I could’ve talked to, to like, kind of explain to me that you have Huntington’s. You don’t have to run from it. Now I can speak openly about it and help other people through the same thing.”
In an exclusive interview with The Healthy, Modling and Forte spoke together about their journey navigating the disorder as a family; the lessons they’ve learned about relationships, humor, and being present; and where people living with Huntington’s can find information and resources.
Find out how your favorite stars stay well when you subscribe to The Healthy newsletter
The Healthy: Doug, you recognized the signs of Huntington’s disease in yourself after watching your dad and grandmother live with it. Can you walk us through that moment of realization—and what gave you the courage to seek answers for yourself when you were so young?
Doug Modling: It’s challenging to see Huntington’s disease symptoms in one’s own body. I couldn’t see my symptoms, but when I look at a video of myself then, I can see it now. My grandmother and my father both had Huntington’s and passed away from complications from the disease. They were both in their seventies, so they lived good lives.
I realized that I might have it because someone with Huntington’s disease has a 50% chance of giving it to their children. When I first found out, it was tough. Thank God I’m past that now—I’m past the pain and the sad part. I’m happy today and I’m probably living a better life than I would have if I didn’t have it. I learned that despite having a disease, you can still live a healthy life and be a happy person. There’s no reason that you should try to run away from reality just because you have a disease. It’s just better to face it. When you face it with everything you have, you give yourself more power against the symptoms. It’s also good to have support groups.
The Healthy: You’ve both used storytelling and community events—like awareness runs—to connect with others impacted by Huntington’s. What have those moments taught you about the role of hope and human connection in managing a condition like this?
Will Forte: [Doug’s father] was the first person I had met who had Huntington’s disease. Then when [Doug] got diagnosed, I was so uncomfortable about how to speak with them. Do I bring it up? I just didn’t want to offend them or make them think about this horrible disease they were living with. But then [Doug] and I went to San Diego to this event that brought together patients and their family members.
When we first got there, there were a lot of people with advanced cases who could not get out of wheelchairs, and I was concerned it would be hard for [Doug] to see. However, he later told me how much he loved being there because he felt like he was part of this community, and he felt supported for the first time in a long time. It made me realize how important communication and support are. So now I bring it up as much as I can.
It’s really a big lesson that’s helped me in all aspects of my life. Communicate about everything—just talk. Learning how to talk to [Doug] about this has brought us closer together and has helped me in my other relationships as well.
The Healthy: Doug, living with a condition like Huntington’s disease requires day-to-day adaptations most people never see. What are some of the practical or unexpected ways you’ve learned to take care of yourself—physically, mentally, or emotionally—that might resonate with anyone managing a chronic condition?
Doug Modling: Chronic disease is just a small part of human life, and there are so many other factors in life that can help you feel good. One of the things that I did to help myself was start working out. I can’t really do too much running or cardio because people with Huntington’s experience extreme weight loss, but I was able to start lifting weights along with aerobics.
Huntington’s has made me a more responsible person, because I have to be. I also think it has made me better at being expressive and staying in the moment. I also think I’m funny because of it—because you have to be. For me, laughing is the key to being happy.
The Healthy: Will, advocacy often starts at home. How has supporting Doug and your wife’s family changed the way you think about showing up for the people you love—especially when it comes to health challenges that unfold over time?
Will Forte: I have a tendency to get very anxious, and I am so focused on what’s happening in my life. And then something like [Doug’s] diagnosis happens, and you realize just how insignificant your day-to-day stresses are, and all you want to do is help [Doug]. It’s just unbelievable what has been thrown at [Doug] and what he has to deal with every day. It’s so impressive to watch him doing it, and if I’m not there supporting him then I’m just not being a good family member. It’s really taught me to realize how lucky I am in my own life to not have something like Huntington’s that I have to deal with, so anything I can do to help him I will.
The Healthy: Looking ahead, what do you both hope people take away from the Honestly HD campaign? And if you could give one piece of advice to families just beginning this journey with Huntington’s disease, what would it be?
Will Forte: I hope that people visit HonestlyHD.com because it’s a great place to go for resources and information about Huntington’s disease. That’s a good place to start to make yourself and your family members aware of Huntington’s. In terms of advice, just communicate about it. At least with our family, it seems like the more you’re talking about it, the better things are. It’s not easy because you want to say the right thing all the time, but it’s better to communicate—so just start now.
The Healthy: What’s a self-care habit you refuse to skip?
Will Forte: I’m a Fitbit guy. I try to go for 20,000 steps a day, and I usually get it done. It’s been great for stamina but also helpful mentally. I get out and walk the dogs, get some fresh air, and have been calling friends and catching up with people or listening to an audiobook. I feel like mentally and physically it’s been a real bonus in my life.
For more wellness updates, subscribe to The Healthy newsletter and follow The Healthy on Facebook and Instagram. Keep reading:
- Longtime Friends Sofia Vergara and Octavia Spencer Share the Healthy Habits They Won’t Skip
- Tony Romo and His Dad Team Up to Tackle a Men’s Health Crisis
- How I Knew I Had Chronic Lyme Disease: A Patient’s Painful Lessons and an Expert Doctor’s Thoughts
- Comedian Matteo Lane on the Healing Power of Laughter
This interview has been edited for length and clarity.
