Hawkin Miller, who lives in Newport Beach, California, was diagnosed with Duchenne muscular dystrophy at age 5 in 2002. He shares how he stays motivated and sets boundaries when caregivers overstep in his Duchenne treatment journey.
Transcript
Yeah, when you’re having a caregiver or individual helping you out, overstepping and you want to set boundaries, the best way to communicate that is really just to communicate it — to tell them in your own words how you want it this way, why you want it this way, and how it can help you.
And I think for me, the biggest thing is just open communication and transparency with my caregivers. If there’s ever a situation where I didn’t like the way something was done, I bring it up. Sometimes they’re receptive to it, but other times they have a good point like, “This was a bit unfair or too much to expect of me.”
And then we have a conversation about it. And I think that just really strengthens that caregiving relationship even more — to be able to have those open conversations whenever they overstep a boundary of communication or whatever it might be.
And I would say, sometimes when you let something that bothers you in and don’t speak to the other person about it, it kind of stays in your heart, and that turns into anger. And that isn’t a good situation to be in.
So I think the open communication and transparency with your caregiver is the best way to alleviate any boundaries that have been overstepped.