This is a part of the Hot Topic podcast series from the Model Systems Knowledge Translation Center on Managing Bowel Function After Spinal Cord Injury. SCI Survivors discuss Overcoming Embarrassment.
Marva Ways: When I first got hurt, I had a shelf with all of my, you know, diapers, but like I say, these were the old big old plastic kind, you know.
Tom Hoatlin: Yeah.
Marva Ways: And blue pads and, you know, catheters and things like this out in the open because it was easier for me to get them. I didn’t have help. And so one day a friend of mine came over and they go aren’t you embarrassed and I said no. That’s what I have to do.
Tom Hoatlin: That’s my life.
Marva Ways: Yeah. And so if anybody comes and, you know, can’t see it, then so be it, but that’s how I roll every day.
Zach Young: It makes it real difficult if you have a hang-up about it because you go to deal with it no matter what.
Tom Hoatlin: Absolutely.
Zach Young: You know, if you’ve got a hang-up about it, then it’s like —
Tom Hoatlin: It’s going to show.
Zach Young: You’re living like a lie all the time or something.
Marva Ways: Exactly.
Tom Hoatlin: Yeah. Yeah. If you’re not being honest about the things that could happen and —
Zach Young: Mm-hmm. Yeah.
Tom Hoatlin: Yeah. I think I went through a period of sort of hiding supplies so people that came over didn’t think I needed anything.
Marva Ways: Really.
Tom Hoatlin: I think I was trying to look more independent than I was or more normal, you know, without any of these health complications, but I don’t know. You soon get over that. It’s too much energy.
Zach Young: Sometimes I still do it just so I don’t have to explain it to people because sometimes it’s easier just to save yourself the time and not have to explain if somebody is like, “What is this thing?”
Tom Hoatlin: Right. Yeah.
Zach Young: It’s like, “Oh, that’s a catheter.” “What do you use it for?”
Tom Hoatlin: Where do you put it?
Zach Young: Yeah.
Tom Hoatlin: Yeah. You find that when you start telling your friends and sometimes your family the things you have to do like especially buddies, when you get a catheter out, they’re like I can’t believe you do that. I can’t imagine that.
Marva Ways: It’s so amazing because, you know, children are so — I don’t even have a word for it, you know, with their accepting and —
Tom Hoatlin: Uninhibited.
Marva Ways: Uninhibited.
Zach Young: Yeah.
Tom Hoatlin: Yeah.
Marva Ways: And so, you know, I’ve had quite a few nieces and nephews and at first I wouldn’t let them see me cathing or changing clothes and they’d always be trying to peek, you know, even when they’d be peeping and, you know, I try and, you know, tell them to go out and that kind of thing, but eventually after I got comfortable enough, you know, if they’re staying with me for a couple of weeks and so forth.
Tom Hoatlin: Yeah.
Marva Ways: You know, if they come in and I’d let them stay, I’d actually let them see the process. And I’d talk to them about it as well, you know, and they would ask, well, why do you have to do that, you know, you’re too big to wear diapers, you’re not a baby, and that kind of thing.
Tom Hoatlin: Right. Yeah.
Marva Ways: And then it gets to the point of Auntie, do you want me to get your diaper for you? Because you have to wear diapers because you —
Tom Hoatlin: They get so comfortable.
Marva Ways: Yeah. Because you might have an accident, right.
Tom Hoatlin: Yeah.
Marva Ways:
Tom Hoatlin: So now you’ve explained and they totally get it.
Marva Ways: Exactly. Exactly.
Tom Hoatlin: And you’re past the awkwardness.
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