The excerpt below is from The Duchenne Life, our weekly livestream with DJ Kimble and Ryan Russell. Thank you to Dr. Natalie Truba of Nationwide Children’s Hospital for being our guest on this episode. Click here for the podcast.
Friendship Challenges as Teens and Adults with Duchenne
Ryan: I feel like a lot of times teenagers go through that phase where they go in their room, or go out the door. They want to eat by themselves. They want to be by themselves.
But when you’ve got a disability, you have to have people there with you all the time. So, Dr. Truba, how does Duchenne affect relationships in adolescence and adulthood versus childhood?
Normal Like Everyone Else
Natalie: Well, adolescence is a very unique time of life. Your hormones are a hell of a drug, your brain is re-scaffolding and you’re getting your body and your mind ready for adulthood.
As a community, it seems like we’re very focused on our younger guys and our men and really trying to figure out what are we doing to improve lives here? Then our adolescents are just kind of going through this tumultuous hormone hell by themselves.
I think the first big challenge that is unique to Duchenne, Beckers and other progressive weakness disorders is that you’re at a time in your life where you want to be “normal and just like everyone else”. But your physical disability makes it really loud and clear that you’re not “just like your peers”. That makes it really hard to do those things that everybody else is doing that help move that development piece along.
For example, do I want to go to college? Well, any college kid will have their very unique pieces to accomplish that, but if your mom’s your caregiver, then your needs will look very different. There just has to be a lot of things in place for the college experience to be as easy or as streamlined as it is for somebody without DMD.
I think it’s something we miss in the community because adolescence is already really hard to begin with. So, I think that’s a really unique piece for the adolescents in our community that we don’t talk about enough. I think that’s a very important piece we should talk about more.
A Simple Invitation
Ryan: Right. There’s always that awkward time when you hear your group of friends talking about some activity or something they did. They didn’t invite you, because they knew you couldn’t do it. But in your mind, it’s like, “Well, you could have still invited me.” So yes, that’s another hard part of Duchenne.
Natalie: And then knowing, too, that they didn’t invite you because they wanted to protect you from feeling bad – not knowing that not being invited can actually hurt worse than being given the opportunity to say, “I can’t do that,” or suggesting ways you can participate. And all that’s just education, right?
Even if your friends are going skydiving and you’re like, “Yeah, I got DMD, I can’t actually jump out of a plane, but thank you for wanting me to be there with you. I’ll still go and watch you guys do it.” That is really important, right?
And this is where that emotional connection comes in. How comfortable are you with the relationship to be able to say, “That really hurt not being included?” That’s where anxiety comes in with being able to talk and be like, “Hey, guys. That hurt my feelings. I’d rather be included and find a way to do that with you than you guys try to shield me because then I feel like I’m not wanted.”
And they would probably be like, “Well, we wanted you to come, but then we felt bad because we realized you couldn’t participate and we didn’t wanna hurt your feelings.” And it’s like the road to hell is paved with good intentions.
I think when people don’t invite you, many are trying to shield your emotions like, “Oh, we don’t want you to feel disappointed.” And in your head, you’re thinking, “Well, thanks, now I feel disappointed, sad, left out, angry, and miserable instead of just being disappointed.” On the other hand, if you’re invited, the internal dialogue is more along the lines of, “I can’t participate but I’m having fun. I’m included. I get to do some things. I’m with my friends.”
What’s important in friendships and relationships is the shared experiences where you can be like, “Oh yeah, that was funny when so and so did this…” Even if you’re not the one out of the plane, you’re still a part of it.
These conversations sometimes help people think about the world differently, which is a big burden to carry. It shouldn’t be on you guys and our community to educate the rest of the world about inclusion. Unfortunately, that’s just how it goes…
But if you are comfortable, it can be a game changer. if you can help people understand your personal experience, then most people will be like “Oh my gosh, we thought we were doing something nice, not doing something not-nice.”
Just Part of the Friendship
“I want to do these things, but I want my mom to come.”
I hear this often. And my rhetorical reply is, “Well, can your friends do things for you?” Of course they can, but it’s a comfort thing for you men…
I know some guys who are in college who are like, “Yeah, it’s really weird to talk to other guys about helping you drink a beer or do XYZ.” But…they want to hang out with you, so they are probably more than willing to do that. That’s just like – if they needed help with something – you would help them and you wouldn’t say, “Well, that’s weird.” It’s just part of the friendship.
And if you use humor and make jokes and make it comfortable – and you don’t make it weird – then they’ll follow your lead. I say this all the time, but improv classes are huge for y’all because it helps you learn to think on your feet and to use humor to diffuse a situation and to help situations feel more comfortable for other people. If you’re a 24-year-old dude, it might feel weird to ask another 24-year-old dude, “Hey, can you, like, feed me right now? Because I can’t.”
But, if you use humor, like, “Well guys, I can’t get drunk and hang out with you if no one helps me do this…” and then they’re laughing and like, “oh, yeah, right” and suddenly it’s more comfortable.
Yeah, it is weird for them because they don’t have to do that with other people, but if you make it funny and you acknowledge it, “Guys, I know this is weird, but, hey it is what it is.” And now it’s not a big thing and it just is what it is, right? But the onus on you and whether you try to make people comfortable so that being part of your life and helping you is comfortable for them.
Adulthood brings maturity and a willingness to expose and allow yourself to feel uncomfortable that maybe wasn’t there before. And I think perspective in adulthood often presents as the only way I’m gonna get this is if I do it myself.
I think the double-edged sword of having DMD is a lot is done for you and that becomes problematic when there’re certain things that only you can really do for yourself. And this is very evident from a relationship standpoint, whether with family, friends or romantic interests. Some things you have to do on your own.