The information below comes from our livestream Challenges of Emotional Intimacy for Adolescents & Adults with DMD with guest psychologist Dr. Natalie Truba. Click here for the full podcast.
Give and Take in Duchenne Relationships
When you have a connection with another human, whether friendship or romantic relationship, it’s vital to understand that relationships aren’t about just one person. Both of the people in the relationship have needs.
I think the most important skills needed in a relationship are the same whether you have Duchenne or not. I would say the skills that are important in a relationship are:
- a willingness to learn
- to be open to experience and to growth
- to receiving feedback
- to allowing yourself the opportunity to be uncomfortable
- to develop comfort with being uncomfortable
- and to have a willingness to be vulnerable
While these skills are not impossible if you have Duchenne, meeting another person’s relationship needs can be daunting for an individual with Duchenne. The biggest barriers are probably going to be pretty unique or idiographic to each of you as an individual, depending on what it is that you struggle with or where you find it easier to be uncomfortable.
But in general, between comorbidities patterns, social obstacles, resistance to vulnerability and a shrinking world, the individual with Duchenne has an immense amount of self growth to contend with to counter their physiology, society’s rules, and personal self-doubt.
DMD Comorbidity Patterns
I do want to say that if you meet one person with DMD then you’ve met one person with DMD. Please remember that everybody presents differently with Duchenne and will have varying needs.
By and large, though, the co-morbidities in Duchenne tend to be things like:
- ADHD
- anxiety
- expressive language concerns
- social and emotional pragmatic difficulties
- some hyper physiological arousal
- some OCD like experiences
- anger or quick to anger
- intense emotions developing quickly
The prevalence rates for these are much higher in Duchenne and Becker than you would see in the general population. These individuals are meeting full blown diagnostic criterion and it’s very clear that they have whichever disorder.
But even apart from comorbidities, statistics of guys and boys with DMD that have some sort of behavior and emotional effect that impacts them on a daily basis is super high. It’s way higher than you’d expect in the general population. So in our Duchenne community, it’s actually much rarer to have no issues that affect you than it is to have issues. The impact on the brain and the body is a lot and it’s real.
Even if you don’t have a disorder, a lot of you all have real social obstacles that make certain things harder than it would for somebody making all the dystrophin that their body should be making.
Social Obstacles with Duchenne
If I had to put a broad brushstroke on it – because you’re asking me to – I would say inability to be flexible in how we think or how we see the world and vulnerability are some of the biggest barriers I see. I also think that expectations and rules do we apply ourselves and how we apply them to other people get in y’all’s way.
So if you’re an individual that is inattentive and it’s hard for you to stay focused, it might be really punishing for somebody to have a conversation with you, because it might seem like you’re not paying attention or not invested or you’re not listening to them.
If you’re somebody that gets really rigid or fixed on something and it’s hard for you to shift to something else, it might not be very enjoyable for someone else to do something with you or want to spend that kind of time because then you like only wanna do it one way or you only can think about it how you’re thinking about or you only wanna do it how you wanna do it. That’s not relationships. That’s like master-slave.
If you struggle with a lot of noises and crowds, that would probably be really overwhelming and that would be hard trying to go out and meet people. And if you’re overwhelmed and you’re in this setting and it’s loud, then all the things that you might do because you’re unregulated kind of play out. Then that might make people think, oh, I don’t know if I want to… that’s a lot… I don’t think they’re OK… because they don’t understand what happens when you get really overwhelmed.
If you’re somebody that gets easily frustrated or you’re particular and you’re trying to build a relationship, and somebody just doesn’t do something you would expect them to or what you would think somebody should do, now you’re upset with them, or you’re like, why would they do that?
Something I see a lot in this population that there are these feelings about what people should be doing or not doing or what the rules are. If other people don’t do it like that, or follow the rules, that bothers you. Again, that comes down to being a little rigid and fixed.
Relationships are give and take. You need to compromise, but you’re willing to because you want this other person to enjoy these things with you and you want them to want to do these things. So, that means being softer around your edges so that people can acclimate themselves into the things you want to do. And that can be hard if you’re really rigid.
Dwindling Opportunities
For a myriad of reasons, individuals with Duchenne tend to really resist being cognitively flexible. They tend to be rigid thinkers who are often resistant to new or uncomfortable situations. So, individuals with Duchenne tend to gravitate to a friend or partner who has a lot of tolerance.
But, when you hit adulthood and you’re not in school anymore, there are no relationship opportunities by proximity. There is no obligatory daily interaction with other people that you can make friends with. You don’t have a whole school of opportunities at your disposal anymore.
I think the rigidity and inflexibility are their biggest barriers in actually developing and/or having relationships with people that feel good to the other person as well. Because when you’re really rigid and inflexible, other people are doing all the accommodating and sacrificing to keep you happy and wanting to meet you where you’re at. But that doesn’t always feel fulfilling for them and so I think that contributes to maybe a less robust relationship than people want or are hoping for sometimes.
And the people you may interact with, well, their own relationship needs might not match up with catering to your thoughts and comfort level. They’re like, “I don’t have time for that. I also want to feel like my needs are being met. I don’t need somebody like that.”
Peers may think, I don’t need to put up with this rigid thinking or these controlling tendencies. And they just screen you out.
Expanding a Shrinking World
I think part of the vulnerability piece is because we get uncomfortable. I think sometimes we do things that are easy, which is any human – that’s not just having Duchenne.
We call it response effort – humans are always going to take the path of least response effort. That’s just how we are. What we know about humans is more response effort means we have to put in a little bit of effort to do well. This is where we often learn our best, we do our best, we perform our best. So, optimal response effort is not when we’re doing the least effort and not when we’re going too much out of our zone of ability.
So low response effort, things are like:
- I only socialize with people online
- with the people I play the video games with
- only the video games that I like
- I socialize with people in the context of only doing things that I like
- and doing the video games I like
- in the ways I like to do them
Well, it’s going to be really hard to meet people if that’s the only way that you’re allowing yourself to socialize with people. It’s a really limited world then, because now you’re limiting yourself to one particular game and only people that like that game and want to play it the way you wanna play it – which I don’t know if there’s a ton of women doing that. Maybe there are some, but then that makes that dating pool a little bit limited.
Low response effort can also prevent us from getting to know people over a shared experience or a hobby or something that you have in common in real life that helps humans connect better.
Talking to people in person and navigating and using different skills – like humor, thinking on your feet and flexibility – really helps to form richer relationships. Developing women friends might be a really good way to practice those relationships that aren’t just aimed at a sexual outcome. There’s a real benefit to learning things from other people, including people of the opposite gender or gender identity.
That is because when we’re really anxious and we feel stuck and we’re not willing to expose ourselves, to allow ourselves to feel uncomfortable, to put ourselves in new situations, to allow ourselves to feel that anxiety, then we’re very limited. So, I think that vulnerability piece really gets in our way of allowing ourselves to be in novel situations where we would allow ourselves to expand our experiences to developing the skill sets we need to develop more meaningful relationships.