Down the Diagnosis Rabbit Hole


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In this episode, I interview Elle Rose about her long and winding road to a proper diagnosis. Learn more about Elle at patreon.com/secretladyspider. https://adultingwithadhd.libsyn.com/ #adhd #adhdwomen

TRANSCRIPT

Sarah: (01:10)
This is the adulting with ADHD podcast. Self-empowerment for women with ADHD today, I have a very special guest elbows, a secret spider lady hosts of I, I flipped it secret lady spider. I can’t say that is what a great podcast that was the most ADHD thing I could have done. And that that’s amazing. I’m not even embarrassed. I love it. Yeah. And L Rose that’s what you, that’s your correct name. Okay. Cause I know some people use pseudonyms and all that, so I didn’t know how you want it to be addressed, but Al Rose, correct.

Sarah: (01:53)
Okay. Secret lady spider. I got it. Okay. So Elle and I met on ADHD, Twitter, but she has a lot of interests that intersect. And at least I’ve noticed on the sidelines that there’s a lot of neat parallels and intersections of the work she’s doing. And I was really interested in talking to her and I was so glad that she volunteered to be on my podcast. So welcome. I’m so happy to have you all. So this is awesome. Oh yeah, sure. So first I wanted to talk about your ADHD diagnosis and it’s, move-in ADHD. It’s pretty complicated and you get into it on your YouTube video, which I watched last night and I just, it is so rich and so dense of just helpful stuff for anyone out there. If you’re having diagnoses drama and the healthcare system and trying to figure out what’s going on, this is a really great video to watch. And so I wanted to ask you regarding this video, you went through a of different doctors and experiences to get the diagnosis you needed. What got you through all that? Because I mean, that had to have been just,

Elle: (03:10)
Yeah, it was, it was a lot

Sarah: (03:14)
Damn. Yeah.

Elle: (03:15)
It started off with, I got diagnosed at like 12 with depression and then we thought it was better for a while. And then I went through all my, when I was in my late teens to early twenties and bipolar disorder. And I also had pretty severely for a while there, I don’t want to talk about too much because I get reminders. Like I was misdiagnosed and I went in and out of psychiatric hospitals for like, it used to be a twice a year deal, like major depression. And I would go back to my doctor depressed again because I was not on the correct medication I needed to answer depressants. And then I finally got to the point, right? Why am I lying to you? Because I’d asked her several times. I was like, Hey, this doesn’t seem right. And so I finally went to this intensive outpatient program for my dissociation, which may also have a dissociative disorder. Like it feels like I started a lot more intensive therapy for that. And it was like, it was like, all my senses got shifted in focus. It’s just amazing insurance, but they did. We diagnosed me. They switched it from inattentive to combination therapy for both make association.

Sarah: (05:23)
Yeah. So that’s, that’s a lot. I also was misdiagnosed bipolar as well and major depressive the whole lifetime and the frustration of just like, Oh my God, once it was figured out, it was like, Holy crap. Like just this whole experience of like, what the hell? You know,

Elle: (05:47)
You feel like once it’s figured out, you feel like, how could this not have been obvious was for you too,

Sarah: (05:59)
Looking back. It was just like, Holy crap. If I, even, if this was even on my radar, I would have been pushing for it. It wasn’t even on my radar. That’s how little I knew about it because you know, the whole stereotype of, you know, it’s a little boy thing.

Elle: (06:13)
Why would I need to know about that? You know, like just completely blindsided. So when you’re going through all these doctors and you’re going through the system and I mean, how did you

Sarah: (06:27)
We’re like that? I mean, that that’s tenacious. Was it just like, what, what, what kept you going? How did you keep?

Elle: (06:35)
Honestly, I would have to credit that to very close friends of mine. And to an extent it took her longer to come around. But my sister, just some really good friends, I had friends who would feed my cats when I was in the hospital. One of them did my, also in the hospital now for three years. Wow. There you go. There you go. Right there in so many ways. So many loving people,

Sarah: (07:32)
I think that’s huge. Wow. Well, I’m just so glad you got the diagnosis you needed finally,

Elle: (07:38)
Man. I mean just what it took to have to get there. Yeah. It’s just, it doesn’t seem like it shouldn’t be this hard,

Sarah: (07:49)
You know? Like why is it so hard?

Elle: (07:53)
It’s crazy so

Sarah: (07:55)
That this on your vlog on YouTube and uh, why don’t you tell our listeners a bit about, about that log and how you got it started?

Elle: (08:04)
Why and the different topics that, that you address in that video? I wrote a blog post about it a few years ago as a video. And I tried to script it a few times. It takes not. Yeah.

Sarah: (08:56)
And I, I noticed that when I was on Twitter, I had taken a break from Twitter for a long time and then came back to it and discovered ADHD, Twitter and their ADHD, Twitter. I I’m, I’m discovering all these other things.

Elle: (09:12)
So that,

Sarah: (09:13)
For those who may not know myself included at first, tell me about your wall asexuality. What, what is that and what is dummy

Elle: (09:21)
Sexuality and talking about that. Yeah. So for those who may not know, sexuality is saying sexual orientation in which someone does not have sexual attraction doesn’t necessarily mean that they don’t enjoy sex because sex sexual orientation, not necessarily connected, but they just, they just don’t have sexual attraction, romantically attracted people regardless of gender and sexual attraction is something that may or may not load. If I get a close bond with that person, sexuality,

Sarah: (09:58)
What’s a good word for it, load. Cause I was going to going at. And I was like, I, I see what they’re saying, but I’m not, I’m still not wrapping my brain, but I liked the way you explain it.

Elle: (10:08)
Yeah. It can be so many people think that sexual and romantic attraction, those communities definitely are really hard to wrap your head around it because we think that sexual attraction is just a part of who everybody is, but that’s not actually true for, like I knew a few years, the number of people I’ve actually had sexual attraction to them. And so I also use the term gray, which means a person who very rarely has sexually attraction.

Sarah: (11:01)
And why is it so important that you, you have these identities and that you’re able to gather with,

Elle: (11:08)
To discuss these issues? I feel like it’s important because I never really felt a sense of a longing. I realized for years and years of work, I’ve just been putting so much of myself. If people are sexually attracted to me and basically my self worth was built on if people wanted my body and being able to like learn that there’s an entire community of people who also don’t really like, yeah, either don’t care or like to be able to come out here. And in some ways that relationship, yeah. That’s kind of what happened

Sarah: (12:28)
And observing, like I’ve been kind of observing from the sidelines, like just these conversations that have been happening. And it seems from the outside that there, there are

Elle: (12:37)
Parallels to, you know, just the idea that you can be yourself and the idea that so many of us have been hiding for so long, how good it feels to be yourself. That’s such a basic thing. And I think we’re all learning, especially now. Like that’s something that can be taken for granted, you know, and just it’s like right

Sarah: (13:02)
In our face right now. But just the very basic idea

Elle: (13:04)
Of just who you are being, who you are. That’s huge.

Sarah: (13:09)
Well, I, I’m glad I came back to Twitter because it is a very

Elle: (13:15)
Friendly place where I’m going, you know, you just get all kinds of people in my experience, often more informed, but yeah, we’re actually informed about experiences with them. Just reach out and be like, I don’t know what to do about this community. People who are like, Oh, it’s incredible. I, I just, Oh my gosh. I don’t know. I can’t

Sarah: (14:07)
Pinpoint when it happened. Like I always knew there were ADHD people on there and I

Elle: (14:11)
Kind of come and gone over the years and just kind of dabbled.

Sarah: (14:15)
I don’t know when it happened, but at some point there was some tipping point at some point. And when I came back on it was like, wow, this is like where I want to be. You know, it’s like, if I could pick anywhere I want to be, this is where I would be.

Elle: (14:28)
That’s just incredible. And so you, you mentioned you have two YouTube channels. Do you want to explain both of your channels to us? Yeah. Sure. So the first one dedicated to the intersection between pop culture and mental health. Most of my videos so far about is not really a coincidence. I’m working on one right here that is about Louise Belcher. She has ADHD autism spectrum disorder. So it’s kind of about what your representation is. And at some point I also want to address bad representation. Every angle I haven’t heard of it.

Sarah: (15:35)
It’s a movie about ADHD.

Elle: (15:40)
Oh,

Sarah: (15:41)
Gotcha. Okay. Split. No,

Elle: (15:43)
I’ve never heard of unbreakable in this character. Has this movie essentially change his physiology also is that sounds like a lot

Sarah: (16:09)
Problematic. I can see why it would be so hated.

Elle: (16:17)
Like, Oh, this is fine. But when an entire group of people with a disability speak up and say, I feel like they have the authority on that.

Sarah: (16:28)
Yes. And I see a lot of conversations like that right now as well. A lot of stuff on Netflix, you know, maybe it was made for the typical hetero, the neuro-typical, but it’s about a different population. And it seems like

Elle: (16:45)
On the spectrum,

Sarah: (16:47)
That’s what I, I haven’t seen it, but I hear that it’s really people feel that way about not so, and I haven’t seen it, so I can’t comment on it. Or the, have you seen this

Elle: (16:58)
So atypical on Netflix? I’ve seen people do like reviews of the first episode personally. Never really struck me as something I actually like was interested in watching. Yeah.

Sarah: (17:12)
I didn’t know this until Twitter, Twitter taught me this, but like, I didn’t know that was, there was some controversy,

Elle: (17:19)
There are just not enough representation of the autistic community. And so

Sarah: (17:25)
That is just incredible. And while you were talking about,

Elle: (17:28)
Okay, sexuality and sexuality, I was curious, is there a representation in pop culture on that Demi sexuality? There might be. I know some people also on Twitter, of course, right. From Facebook to Twitter, but there is a good representation. And also I think a good representation for ADHD. They’ll take you through his thought patterns and it’s just like,

Sarah: (18:27)
That’s a show I keep meaning to watch and never get around to. But

Elle: (18:40)
Written shows I’ve ever sat in his heart.

Sarah: (18:45)
I mean, the fact that you said one of the best I’ve had to sit through, like that just tells me right there. I had to sit through it. You didn’t watch it. You sat through it.

Elle: (18:54)
No, I mean, it was good. Yeah. I can’t sit down and watch a movie. I’m like, this is my laser.

Sarah: (19:12)
I got this. I’m the same way. I mean, I could just sit and sit and sit forever,

Elle: (19:19)
Which has been everything.

Sarah: (19:32)
Yeah. And I think there’s a limit. Where can people find you keep up with it,

Elle: (19:37)
You and see your stuff. I just realized I didn’t talk about my channel at all. No, it’s fine.

Sarah: (19:44)
No, it’s totally fine. That’s why I have my questions ahead of time. So I remembered that asking

Elle: (19:53)
Very briefly so on Twitter, because Twitter said that was too many characters, secretly spider channels, different content like every week. So this week culture mental health, this next week, it’s going to be an article on sexuality.com/secret little spider specify that they don’t.

 

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