Talking to Your Partner

Dating with a UCD has been very similar to having friends who also know about my UCD. Just because I, right at the outset, tell people, because a lot of times, we do the first time is go and eat, or go and have a drink. It’s just a very socially normal thing to go and do. And I feel like if I’m trying to hide part of it, it, it just doesn’t make sense to hide anything. I will, I’m not afraid to talk about it. So, if people want to know, that’s fine.

I find that in relationships and friendships or dating or personal life, I haven’t really had anybody absolutely opposed. Because, frankly, I don’t think anybody should oppose a disorder. That just seems wrong. So, I, thankfully, at least, haven’t experienced that.

I think that having to feel like I looked different was more something to cope with, and growing up didn’t really start feeling different until gymnastics. It was when I started gymnastics and I had a feeding tube and my leo went over my feeding tube and my feeding tube stuck out. It was more, okay, now I look different. And that was something that I really struggled with. And I’m glad I was able to get over that because I continued doing gymnastics up until senior year of high school and competed and traveled.

My boyfriend, Grant, has been so supportive in terms of being able to take care of me when I’m sick, specifically… He has my back. And he’s been there for every single hospitalization and all of those, which has been really nice to have like another support person in my life that cares enough to continue to show up.

Grant makes me feel very safe. I think it’s just his personality and, like, knowing that he’s been by my side for so long that I don’t think—It’s just kind of almost like a loyalty thing. Like, I know that he’s here for me.

JULI: It’s so important to have someone to advocate for you when you can’t advocate for yourself, because that’s exactly what happens when I start experiencing these symptoms. Sometimes I know what’s going on, I just can’t get the words out. Other times I’m really not aware of my surroundings.

It’s very important to have someone there for you that can explain to them what’s going on. That has that letter there for you. And that can talk to the staff.

ERIN: It starts off, she’ll say she’s not feeling great. She’ll say she has a headache. She’s tired. Normally she’s just sweet, delight and everything, but when she starts to get a little “un-Juli”, then we know, okay, we should probably call the hospital.

I find myself explaining to very highly educated people what this is, which is just funny for me to be doing that. But they just don’t run across it. It’s that rare.  And the biggest thing is we need to treat the symptoms as quick as possible.

JULI: The scary thing is too a lot of ER staff don’t recognize these symptoms, they may think you look like a drunk person coming in, and they don’t know what signs or symptoms to look for. They don’t know that you need to go back and get your blood drawn, check your ammonia, check a few things, get you started on the medication that you need.

It can be very frustrating when you’re trying to explain it to someone that’s supposed to be there to help you and take care of you and you’re telling them exactly what it is and what you need.

ERIN: I have a letter from their genetics team says that they immediately need to contact them, and they will give them orders and what to follow.

You want to advocate but keep calm because A. they don’t want to be told how to do their jobs even when they’re doing it incorrectly, and B. they don’t want anybody kind of dictating they’re protocol that they’re used to. Luckily the last couple times it’s happened, the genetics team has gotten over there quickly or at least communicated what needs to happen. And then they’re like “Okay well your team has told us this is what we’re going to do” and then I feel really good. They’ve got it under control.

Her doctor can look at her and say, “oh, something’s not quite right today. Cause she’s not her bubbly self.” I think that’s as important as anything. Having some medical professionals know what you’re like normally.

JULI: Yes, because I’m a completely different person. I am not the same person in the hospital that I am in real life. Sometimes they seem surprised that I hold a full-time job because like you said, I have zero decision-making skills. Even if I think I do, which is the hard part. Sometimes I think I’m fine, but Erin and people that know me, know that I’m not fine. Just knowing me in real life, knowing what I’m normally like. Having a good team that you can trust, because you really are trusting them with your life. It’s very important.