In our continued efforts to get formally diagnosed and seek professional support and services as neurodivergents, we have a LOT of rage about the entire system, particularly how so many medical professionals seem adverse to diagnosis as they don’t want to “label” you or “put you in a box,” even if that’s what YOU want.
Pop Tops
We talk about “fork theory,” a new theory by TikTok-er @catiosaurus) that Callie discovered which is specifically for neurodivergent folks.
Fork Theory (TikTok)
Joke
“I made a hiking playlist with The Cranberries, The Peanuts, and Eminem…” (thanks, sister!)
Main Topic: When Medical Professionals Are Too Lax About Diagnoses
This is a loose, free-form rant about our rage over not being diagnosed because we’ve had medical professionals and healthcare workers who thought “labeling” ourselves was a bad thing and therefore thought our attempts to find a name for our struggles and experiences was a thing to be discouraged. Now, we’re both facing nearly insurmountable barriers to diagnosis and treatment.
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Transcript
027 Diagnosis and labels.mp3
Nichole [00:00:27] Hi, everyone. Welcome to Bitchy Shit Show, the podcast. This is Episode 27 in this new adventure we’re on together in the Year of our Lord, 2020. I’m Nichole.
Callie [00:00:43] And I’m Callie.
Nichole [00:00:45] And today we’ll be talking about…
Callie [00:00:55] Today, we are doing a, hopefully cathartic rant about the process to get a diagnosis and why all of this talk over why people have to get a diagnosis is like really fucking ablest and shitty.
Nichole [00:01:15] Yep. And we’re going to connect what we see as a trend with medical professionals who are like, “Who needs a diagnosis? Like why label things, babe?” as fucking infuriating on many levels. So it’s going to be a free form rantisode for all of you, which I know is always a crowd favorite. But first, before we get into that, Callie was going to pop her top, her lovely pink top over a Dr. Drew reaction to a Tik-Tok.
Callie [00:01:51] Yeah. Although, so I was trying to -.
Nichole [00:01:54] Look at how cool your mom’s are by the way. We’re talking about Tik-Tok, we’re so with it.
Callie [00:02:00] Yeah, because I’d never do that.
Nichole [00:02:01] No.
Callie [00:02:03] Yes, so I was trying to find the clip though that explained what happened and I couldn’t. So now I’m feeling like maybe I shouldn’t… I don’t want to like misquote like what he said, and I don’t really know enough about it I feel like to speak off the cuff so…
Nichole [00:02:21] Well, did you just have a reaction to his reaction?
Callie [00:02:24] Oh yeah. That works.
Nichole [00:02:26] Yeah. Do that.
Callie [00:02:28] That does work. I feel like I should play the video, yeah?
Nichole [00:02:36] Yeah, let’s do it.
Callie [00:02:36] OK. So maybe just entertain the kids for a minute.
Nichole [00:02:43] Hi, kids. How is everyone today?
Callie [00:02:50] Y’all I just hope you’re ready. Now, I’m, like, interrupting you after I asked you to do something.
Nichole [00:02:56] I know.
Callie [00:02:57] We both very much kind of feel unorganized and scattered today.
Nichole [00:03:03] If you can’t tell.
Callie [00:03:05] Yeah. Just please, like, bear with us.
Nichole [00:03:12] Yeah, we are going to be on the Progressive Podcast later, which is great, but I am a little concerned because I was telling Callie I’m having one of those days where it’s like, huh, I just want to watch TV and like, not talk to anyone. I don’t feel like I have much to say about anything. So we’ll see. That’s usually how we feel, though, before we end up delving into complete chaos. And usually something good comes out of it so fingers crossed.
Nichole [00:03:48] I’ve had a bunch of big wins lately getting stuff out of my house. I sold my sewing machine, which was a massive win for me because I got some good money for it. And now I have a lot more space for storage. But it’s taken up a lot of my spoon’s to be gifting and selling stuff on the Internet and coordinating pickups and sales with people and answering questions. And so I’m a little tapped out. But happy to be here. Always happy to see my kids, you know? I just don’t know if mommy is going to have any pearls of wisdom today.
Callie [00:04:33] Oh, my god. I just… I’m just not ready for this today.
Nichole [00:04:39] It’s okay. I probably should have let you just bow out of it.
Callie [00:04:45] It’s fine. Okay, so.
Nichole [00:04:49] The spoon did turn into a fork. We could’ve talked about that. We could’ve just talked about cutlery. That would have been more relevant.
Callie [00:04:57] Should we do that?
Nichole [00:04:59] Yeah, let’s do it.
Callie [00:04:59] We could still do that because I found the video, but…
Nichole [00:05:02] We can do whatever we want. Let’s talk about that. Well, now you need to find the fork video.
Callie [00:05:12] Absolutely not.
Nichole [00:05:17] Can I search the Tik-Tok without having a Tik-Tok?
Callie [00:05:23] I don’t know.
Nichole [00:05:24] I think I can.
Callie [00:05:25] I don’t ever know what you see.
Nichole [00:05:28] Oh, no looks like I can’t.
Callie [00:05:31] But actually it should be easy for me to find because it’s in Discord, so I don’t have to like…
Nichole [00:05:38] If this is your first episode, I will not say that we are always on top of things, but this is exceptionally scattered. So just bear with us. So the overall gist is that you have spoon theory, which says if people are given spoons to do things, so look at it is like a unit of energy-
Callie [00:06:04] Oh I found it!
Nichole [00:06:06] Yay! Then, you know, you’re gonna have some people it takes them more spoons to do certain activities than other people, and/or some people have fewer spoons in a day than other people. And so it’s a nice, non-monetary way to describe the experiences of people who are neurodivergent, mentally ill, chronically ill, etc., to try to get that across to able bodied people who don’t understand why you can’t just do something because it’s so easy. And then fork theory is great because it’s for neurodivergent people specifically. And it’s like so spot on. It’s fascinating.
Callie [00:06:51] I’m excited. I’m actually really excited that you brought this up because I had shared it. I don’t think you and I have actually talked about it since, like it’s been shared and talked about by other people, because I was really curious to hear your thoughts as someone who likes spoon theory, like as someone who’s suffered under chronic illness and spoon theory has been so helpful to you, I was wondering if you had maybe any like, complicated thoughts over this. But yeah, let me let me play it.
Tik Toc Video [00:07:24] Today, we’re going to talk about ADHD spoon theory. Now, I want to be really clear. I did not invent spoon theory. It was invented in 2003 by a woman named Christine Miserandino. But this is kind of my own take on it that I’ve used to explain ADHD to people who just don’t seem to get it. So the idea behind spoon theory is that everybody is given a certain number of spoons per day. When you have to do a task, say take a shower or go to the grocery store, you take away a spoon. And when you run out of spoons, you’re done for the day. And that’s kind of what living with a chronic illness is like. However, I have a theory about ADHD.
Tik Toc Video [00:07:56] ADHD is like having forks instead of spoons. What starts off as one task, we’ll say taking a shower, can quickly expand into multiple tasks. We’ll say, “Oh, no, I have to clean the bathroom,” or “I have to dye my hair,” or “I have to organize my laundry.” And so with ADHD, if you’ve prepared yourself for four spoons, suddenly you might be shocked to find sixteen tines on your spoons. And sometimes those tasks multiply so quickly that they can be really hard to get on top of. Fork theory.
Nichole [00:08:25] That describes it really well. And I think for me, I actually really liked this because I still am like, do I have ADHD sometimes because I relate to so much of it. But I know that autism and ADHD can be experienced at the same time, but also have a lot of overlap. But like I related to that so much. And I think that it actually helps me explain my experience even better to people, because that happens to me all the time. Like literally what she said. There’s so many times where I’m like I just need to take a shower. And then I’m like, oh, my hair’s kind of faded, I should tone it. And then I’m like, oh, the bathroom’s dirty, I should clean it. And then I’m like, oh, the shirt I want… You know, it just starts like, oh I don’t know what I’m going to wear later. And somehow I haven’t taken a shower yet, but I’m digging through my clothes to figure out what outfit I’m going to wear, which is not relevant, so like just take the fucking shower, you know?
Nichole [00:09:29] And I think it helps explain why you could use more spoons for one task than other people. You know, so I think it actually connects really well in a way that I find very helpful. Very, very helpful.
Callie [00:09:53] Well, yay. And yeah, I mean, I felt exactly the same way. Like, my mind was just immediately blown when I saw it. I like, rushed into the Discord channel to share it. But it’s interesting, this like phrasing that keeps seeming to come up in ADHD communities or ADHD resources and pages and stuff. This idea of like efficiency and maybe that was what was shared in her, like, because I think you’re right. I think she did a part two or maybe I saw someone else talking about it. But it’s so funny, I have always done this thing, and I always thought it was because I liked to be efficient or because I had a low tolerance for things that, like waste my time, which I’m finding is also something related to ADHD.
Nichole [00:10:46] I have that too.
Callie [00:10:47] But so there’s this idea that, like, if I’m going to do a thing, I might as well get like the most possible out of it I can. And so this bridging the gap of like spoon theory and this idea of like, oh, you think you have one task, you know, but it’s like so many more things because you’re like exactly that. You know, oh, I need to wash my hair. Oh, but my hair color is faded so I need to, like, color it first, which means then I have to, like, get out the gloves and I have to like, clean up my space and I have to color it and I have to sit and wait with the color in my hair and then I have to wash it out. And then it’s like, oh, if I’m washing my hair, then I might as well wash my bed sheets because I don’t like want to get back in bed with, like, dirty hair or you know, dirty sheets with clean hair. And it’s just like, it starts to snowball and like so often I’m just like, oh fucking forget it, you know, and then I won’t do the things. And I’m always like, why can I not seem to like, just fucking take care of myself? Like I’m making myself miserable because I’m not doing the things will make me feel better. Like my hair today is dirty, which is why it’s clipped back. And I just was like, I can’t find the time or energy yesterday to like, wash my fuckin hair, you know, because it’s like a whole fucking thing. Then you have to style it, and then…
Nichole [00:12:11] And you try to tell people that. You try to say it’s a whole fucking thing and they’re like, scoff. You know? You just get this fucking attitude from people this judgy fuckin bullshit from people. And it’s like, no, it is actually a whole thing.
Callie [00:12:25] Yeah. Yeah, like it really.
Nichole [00:12:27] Like literally every time I even take a shower I’m looking at like, is the tub dirty? I really need to swap out that shower curtain because it’s getting a little like, you know, foggy and just like all this stuff. And then I’m like, oh like should I like exfoliate and then moisturize after or should I not do that. Maybe oh I haven’t like pumiced my feet in a while. It’s just like this whole thing where it really just started as like I just need a five minute shower.
Callie [00:12:57] Right. Yeah.
Nichole [00:12:58] And then it’s this whole thing. And then I also can’t remember all the other things that I needed to do. So I get out of the shower and I just feel completely lost. And then I look at the time and I’m like, how has it been half an hour when all I needed to do is take a five minute shower? That happened to me this morning. I wanted to paint my nails and somehow we’re here now, you know? And I got up early today and I can’t tell you what I did. But I was busy the whole time I was doing stuff the entire time.
Callie [00:13:25] Yeah.
Nichole [00:13:29] I just don’t think people who don’t experience this can really understand how everything, like for me at least, everything has equal weight in my head.
Callie [00:13:39] Yes!
Nichole [00:13:40] And I don’t think people can understand how debilitating that can be when you literally… Like people are always like, “Well write it down and prioritize it.” It’s like you don’t understand. Everything has equal weight in my head. Period. Like that is it. And yes, I can make lists and I make them all the time. I’ve shown them off on the show before. I have lists everywhere. But that’s what happens when everything has equal priority in your head is like you can make a list and you’ll just end up making five more lists because you can’t stop thinking about all the things. And especially when you’re someone who tends to forget the things or not know what order to do them in, like it just gets out of control. And it’s just so hard.
Nichole [00:14:23] Like, I can sit down and I can make a list of priorities, but it’s not going to stop my brain from thinking about all the other stuff that’s not on the list. And I’m going to have to constantly stop myself from doing things not on the list. And then there’s just shit like I have to make this tea that my naturopath gave me. It’s like a medicinal tea and it’s the easiest thing. Like, I just literally let it sit overnight to infuse and then I strain it and I drink it throughout the day. And I can’t tell you how many times I’ve come so close to straining the tea into the sink instead of into a container, because literally all the steps to strain and drink the tea are the same in my head. Like they don’t have an order to them, you know what I mean? It’s like get the strainer out, but put the strainer over a pot or something and then strain the tea into that. You know? And it’s like so many times I’ve almost just done strainer, tea, over the sink, which would have drained all my tea. And it’s like I literally have to stop every time I’m straining tea and be like, okay, put it over a container first. And do you like understand how much energy you expend throughout the day when everything is like that? Literally, you have to stop and be like, alright, what order do I do this in to not ruin the entire thing that I’m doing. And sometimes it still happens and then you get so depressed. You get so depressed and upset and it’s so exhausting. It’s mentally exhausting.
Callie [00:15:57] Yeah. That was all just so well said and so real because like not only do our brains work differently, but then also like we have executive functioning issues, like both. So even trying to re-sort the list of tasks, you know. Like now looking through the lens of fork theory, like if I’m like, oh, I need to like, wash my hair. Right, going back to that example. Then I start thinking of like all the things that I need to do, like my spoons turn into forks and now I have like eight tasks instead of like one, right, of things that I need to take care of that are around the idea of a shower and washing my hair. But then I also, we have problems with like prioritizing those items. Right, this is something used to talk about a lot before you even, you know, realized you were autistic. And now I’m finding out that that’s a common thing with ADHD, too, is it’s lower executive functioning. And it makes it then really hard to think about, like, ok, I need to, like, figure out the order in which to do this that makes it all makes sense. And it just takes so much mental energy to figure all that out and to try to do it. And it’s like you’re wiped out before you even really even done anything, you know?
Nichole [00:17:28] Yeah.
Callie [00:17:28] Or like, oh, I need to go to the grocery store. And it’s like, oh, well, if I’m leaving my house, which is not something I do, you know very often, that I might as well get everything done that I need to.
Nichole [00:17:40] Yes!
Callie [00:17:41] It takes so much energy to, like, get myself up and out of my apartment that I’m like, oh, if I’m going out, if I’m going to like, spend the spoons to just leave, then I may as well make it as efficient as possible and get as much done as possible. And then it’s like then you’re trying to figure out all the errands you need to run. And then it’s like all the things you need to do in preparations for all those errands. And it’s just like every little thing turns into, like, such a big fucking deal and it’s so draining. And then it’s like, oh, I’ve done one thing today. I’ve gone to the store and I have no fucking forks left. I have no spoons left, like I have nothing.
Nichole [00:18:21] No cutlery.
Callie [00:18:23] None.
Nichole [00:18:24] The drawers are empty.
Callie [00:18:26] Right? I get home and I’m like fucking tired and I have like, nothing else in me for the day. And I’m like, I am a 32 year old adult. Like, I shouldn’t have nothing left in my fuckin tank from going to the grocery store. And I’ve said this exact thing to you and you’re like, yeah girl, you know.
Nichole [00:18:46] I get it, yeah.
Callie [00:18:46] It’s just it’s hard. And so, yeah, this fork theory, like, really, really blew my mind cause it explained something that I didn’t even really realize I was struggling with. And again, I think the most mind blowing part of realizing I have ADHD and I’m sure you’re having this experience as well, is just like finding out the things that like you not only think other people are doing things more successfully than you are, like they’re not struggling in the way you are. But like, you don’t even realize that it’s like not a problem for them. Like you just think they’re maybe able to overcome these things. But like now I’m finding out like, oh, other people can like just, when they’re sitting on the couch, like scrolling Tik-Tok and being like, I’ve been on my phone for like hours now, I’m really tired and I need to go to bed.
Nichole [00:19:39] Or ten minutes.
Callie [00:19:40] Or ten minutes.
Nichole [00:19:40] Which is something I can’t even fathom.
Callie [00:19:45] And they’re like, oh, I’m tired, I’m going to go to bed. Like they can just put their fucking phone down and go to bed. And I’m like, oh I can’t.
Nichole [00:19:55] Yeah, and not get overwhelmed by needing to brush their teeth and then wash their face and then realize, oh, I didn’t do my face mask yet. Maybe I need to do that tonight. Well if I’m doing my face mask then… you know. Whole fuckin thing.
Callie [00:20:09] I just thought people were, these hurdles that I had, they were just easier for them or they just had more willpower in order to overcome them. Like I didn’t realize they didn’t even have these hurdles. And it’s like, the emotional weight of starting to realize that is like, I’m all over the place. Like, some days I’m really… I could just cry from the relief of, like, I can’t believe I finally understand now. And then other days, I’m just, like, so mad that I’ve spent so many years and continue to beat myself up over a thing that like, other people don’t even have to think about. Like don’t think about. Like not only do they not have to, like, overcome it, they don’t even have to think about it. It doesn’t factor in. They’re not always internally warring with themselves.
Nichole [00:21:05] Yeah.
Callie [00:21:05] Like, no wonder they have more energy than I do.
Nichole [00:21:09] Yeah. Which I think is a great transition into today’s topic and our rage around all of this. However, first. Which one do you want to tell you, I’ve gotten so many good jokes lately. Ok, I’ve Had this one for a little while, and it actually came from my sister. So shout out to my sis. I made a hiking playlist that had The Peanuts, The Cranberries and Eminem. I call it my trail mix. Do you get it?
Callie [00:22:01] Yes.
Nichole [00:22:02] Do you get how those are ingredients that are in trail mix?
Callie [00:22:07] Yes.
Nichole [00:22:07] That these are compilations of artists with those same names that I listen to while hiking on trails? So thanks to Gina Bug, it runs in the family.
Callie [00:22:22] Oh god.
Nichole [00:22:23] We got it from our momma. Which is so funny because I used to just give her so much shit when I was like a teenager or a tween, like, you’re so corny, stop.
Callie [00:22:39] I just saw Mohera’s comment: DO YOU GET IT? Like in all caps. Um yes. Very cute.
Nichole [00:22:48] Do we have people to thank today?
Callie [00:22:50] We do.
Nichole [00:22:54] Excellent.
Callie [00:22:54] So new patrons to the show. So thank you so much to Lindsay, Lane, Meghan increased their pledge, Kerry is a new patron, Landon increased their pledge and Alex is a new patron. So thank you to all of those, our new patrons or increased patrons through patreon.com/bitchyshitshow. And then we also got a very-.
Nichole [00:23:26] Maybe our best donation ever in terms of creativity and style points.
Callie [00:23:33] Do you want to announce it? This is more up your alley.
Nichole [00:23:37] I haven’t seen them on the thread today so I don’t know if they’re here. It’s Marja. But I know that that’s not the right way to say it. So I apologize. I actually have a little list of how to pronounce people’s names going.
Callie [00:23:51] I was starting one of those lists, too! I’m like why can I not hold this information in my head.
Nichole [00:23:58] Yeah. Oh you are here! I think. Is that the same person, is that the same spelling? Is it m-i-a-j-a? Or is it m-a-r-j-a?
Callie [00:24:06] It’s m-a-r-j-a.
Nichole [00:24:09] Oh It’s another person then.
Callie [00:24:10] Then it’s them!
Nichole [00:24:11] Oh, it is them. How do you say your name? Cause now you’re our daddy. So we have to say it. But yes, they gave us a generous donation and a very sexy dollar amount and said, what did they say? Now I’m your daddy?
Callie [00:24:32] “Call me daddy” is the note..
Nichole [00:24:34] I have to say, I got a little wet. I’m not going to lie. I was like, I’m a little turned on right now. Everything about it was pretty sexy. So thank you for that. It made us laugh and you know, also supports this show.
Callie [00:24:57] It was just so fucking funny. It was like honestly so funny. And just seeing like I can’t tell y’all how much we appreciate like when we do a live stream, especially when we like happen to remember to plug our socials or our Patreon and then to see the donations coming in. It’s really incredible.
Nichole [00:25:22] It is.
Callie [00:25:22] I mean, it seems like now when we do a live stream, we’ll see a few come in, like right after. And it’s like people that we’re interacting with regularly. And it just is so like uplifting, inspiring, like it’s just incredible. That we continue to have your support that you, like, put up with our fuckin goofiness and the full shit show of sometimes we’re, you know, a mess and chaotic disorder. And then other times we’re like raging about stuff and sometimes we’re like giggling about things that we shouldn’t and it’s just, to know that y’all are like in this with us, just like makes our fuckin day, week, month, year. All of that.
Nichole [00:26:07] Life.
Callie [00:26:07] Life, yeah.
Nichole [00:26:09] And that’s a very long time for me so that’s a huge compliment.
Callie [00:26:14] Yes. And no you did not cross any boundaries. That was so funny.
Nichole [00:26:19] No it was like perfect. Like I got it and I just cackled for like ten minutes. I just was like, this is so great.
Callie [00:26:26] It’s so perfect humor too. Like, I love when y’all are like on the same page with us as our humor. Because it like can be so hit or miss and all over the board. And then when you like fucking get it and are right they’re like shot for shot with us it’s just incredible.
Nichole [00:26:43] To have inside jokes with like a group of people who we’ve never like met in person. It’s weird by like, amazing. It’s just so much fun. It’s so much fun. Yes so also Patreon enabled a feature this week where, now that I opted into, where now we can take euros and pounds. So if you’ve been holding out because of the, you know, currency exchange, then they’ve made it easier. And it is enabled on our account. So you can go to patreon.com/bitchyshitshow… VWPA is still in there but nope, no, that’s not it.
Callie [00:27:29] Well, that’s better, my brain went to patreon.com/thoughtslime, which is also a great person to support.
Nichole [00:27:36] I mean he’s great.
Callie [00:27:37] Definitely not our show.
Nichole [00:27:42] Yeah. And you know, even if you can’t or don’t want to donate, I reconfigured all the tiers so they’re funny. So you can just go read the tiers and get a good chuckle.
Callie [00:27:53] Yeah, see all the great creative work you did in matching the gifts with the funny titles and descriptions and just all the things. Our Patreon is just like fuckin poppin now, it’s so funny.
Nichole [00:28:11] I’m so proud of it.
Callie [00:28:12] You should be.
Nichole [00:28:12] Because it’s been such an abandoned part, a neglected part of our whole platform this whole time. And it’s always been something that I like was exhausted thinking about because I’m like how can we do more work? And I don’t know what to do. And then it’s like the land of broken promises. Like every time I go to it, I’m like, oh, I forgot we even promised that. So now it’s so nice to have it be like a thing that I’m proud of and that brings me joy and that, you know, is in line with what we’re actually doing, it’s just super nice. So, you know, speaking of cognitive issues, executive function, all of that thing, all of that stuff, this was like a big thing for me to get this off my brain because it was something that would pop up while I was trying to focus on other stuff. It’s like a huge sigh of relief.
Nichole [00:29:06] Mohera if that ever happened, I would just die happy. If we ever collab with Matt then that will be what we call the episode. Bitchy Thoughts Shit Slime Show.
Callie [00:29:27] Yeah.
Nichole [00:29:28] So today, as mentioned, we’re very excited. We’re being interviewed on Progressive Podcast Australia Today by Nick, one of the hosts of that show. We’re actually talking about identity politics, which we’ve covered a few times over here. So it’s really going to be more of a conversation about cooption and neo liberalism and just things to watch out for in political conversations when people bring up identity, what they’re calling identity politics. I’m very excited about it. I will let you know when that’s all out. That being said, today’s episode will be somewhat brief and the after party won’t be too long because we have to go get ready for that. So we thought how fun, how perfect to just do a freeform rant about shit that’s been pissing us off lately. And, you know, there’s a long list of things that have been pissing us off lately, and forever.
Callie [00:30:32] Seemingly endless.
Nichole [00:30:34] Right. But I think one of the biggest things, so I know on a recent episode I did talk about the requirements around the process to get diagnosed officially with autism and how cost prohibitive, time prohibitive, if you don’t have access to information about yourself as a very small child, that could be a barrier. The fact if you don’t have access to family members to come in and give some of that background information, that can be a barrier. It takes a long time. There’s just a lot to it that prevents you from being diagnosed. So I thought because autism, if you have a diagnosis, you’re entitled to services of some level, that’s how they diagnose it’s like what level you are, and that lets you know, like which services you’re entitled to.
Nichole [00:31:24] I assumed that ADHD would be easier to get diagnosed with, however Callie sent me a Marco Polo after her conversation with someone who specializes in ADHD and she ended up finding out that the process is almost exactly the same. Now it’s through this particular person, you know, possibly she could go get diagnosed more easily by someone else. But it was very similar. It was very costly. Two to three sessions or three to four sessions, I think you said.
Callie [00:31:59] Yeah.
Nichole [00:32:00] At a very high rate per hour. There is a need for close friends and family to come in, if possible. There is a need for a lot of information about how you were as a kid. And when she was telling me this, this just made my fucking head pop off, because the biggest thing that pissed me off was that for both of us… So for me, it would have been almost exactly the same process to get an informal diagnosis. So that still wouldn’t have gotten me access to any services, but I could be out on the internet being like, yeah, my therapist, like, we did all this stuff and she says that I am. Same thing, it would have been, you know, two to four sessions at a high rate with all this information I had to provide blah, blah, blah. So it just occurred to me as she was talking about this, that I was like, you and I have both been in fucking therapy for years now.
Callie [00:32:59] Say It!
Nichole [00:32:59] Multiple annuals of therapy. Years, is what I’m saying. And now for us to get any kind of diagnosis, we’d have to start the fuck over with somebody else and go jump through all these fucking hoops to get someone to give us a diagnosis. That is fucking inexcusable. And the biggest reason that this has happened is because the people we were going to initially are the type of people who are like, you don’t need a diagnosis. Like we don’t need to label things, babe, like just know, you know, just pay attention to your body and like, who cares? And like, you don’t need to get stuck in a box. And it’s like, I’m sorry, my fucking brain actually works differently. My body chemistry, my brain chemistry is actually different from other people’s. And you don’t think that I needed to know that? And now for me to go get a diagnosis, I have to start over and pay all this money out of pocket with someone else where I could have had this the whole fucking time. And it just made me furious, absolutely furious.
Callie [00:34:13] Yes. Thank you, god. And it was funny because I was like… So Mohera asked, “What is Marco Polo?” So I’ll just briefly talk about that, maybe give some context for our conversation. It’s a chatting app where you can send video messages to each other. So it’s like the app is really just like you record a short video of yourself and you send it and your whole chat thread is just like videos back and forth. So Nichole and I, since we both tend to be people that, like, verbally talk about things, it’s just worked well for us to, like, have these chat conversations over Marco Polo.
Callie [00:34:52] So yeah. So I came into our conversation and I was like updating her on this process, which, as Nichole just said, is like very similar to the process to get an autism diagnosis, at least an informal one. And I was just like ranting about this. And also the fact that, like, you know, the person was talking… I mean, she was super nice. Like, don’t get me wrong. She seemed super nice. She spent a lot of time with me on the phone just like answering questions and stuff, trying to help me figure out my insurance situation and let me know, like what I need to ask my insurance company just to make sure it’s going to be covered and all of that stuff. But, you know, she did that thing that a lot of doctors do where they’re kind of like, you know, and I’m just letting you know, like I don’t give out diagnoses, like, very quickly or very easily. Like, I really want to make sure that we find the right diagnosis. And we don’t like rush to just like put a label out there. And she’s like, you know, and then I’m also then very slow to, like, prescribe medication. And I’m going to want to, like if we do end up taking that step, I always want people to be on like the lowest possible dose and things.
Callie [00:36:04] Which like, in one sense, I’m like, ok, that’s setting good boundaries, like you’re clearly communicating, like where you’re coming from. But like, so many people that have been struggling have been feeling like it’s a personal failure. Right, it’s like exactly what we were talking about in our first segment. They feel like it’s just them. They don’t know other people are having the same problems and they finally realize other people are not having the same problems. Then they like, think it’s just like a personal feeling, like they’re lazy or they’re stupid or whatever, like whatever it is, right, all of those negative self talk that people tend to come up about themselves. And a lot of times you’ve seen multiple doctors, multiple experts over your life. You always kind of get like that shrug of like, I don’t know. Or people that are like just trying a whole bunch of different things and nothing really sticks, nothing really helps or makes sense.
Callie [00:37:02] And so, like, you’re dealing with people that already have like some amount of trauma around the process and it’s hard, I mean, I communicated like how nervous I was to take this step to try to, like, get a diagnosis, because the more I read and learn about ADHD, the more I think I, like, definitely fucking have it, you know? And that’s brought me like some measure of healing already. And then to feel like someone could just be like, oh, no, you don’t. Right, like, that’s nerve wracking because it feels like you’d be starting from scratch. And it means like all of that negative self talk is like real. It’s not, you know, I don’t have a reason. So it’s just a lot of emotional shit to deal with. And then to have a doctor kind of give you that speech of like, oh, like I’m just letting you know, it’s like I don’t give out a diagnosis easily. It’s almost like the accusation in their voice. And I know they probably don’t mean it like an accusation, but that’s what it feels like. It feels like someone is trying to be like, oh, I’m going to make sure you don’t get to, like, claim this if it’s, like, not right or I’m going to, like, catch you if you’re trying to trick me.
Callie [00:38:24] And as Nichole said, both of us have been in therapy through multiple periods of our lives, through many years of our lives. We’ve seen several different therapists. Nichole has seen a lot of doctors and specialists and naturopaths and all these people about the issues she’s had. And like no one’s ever suggested, like I was actively in therapy and my therapist did not ever even mention ADHD. So because she is very similar to Nicole’s therapist in that they both were kind of like, oh, you know, we don’t want to get too hung up on labels. We want to, like, just focus on the processes and like how you’re doing. So I have this person who is like downplaying the idea of a diagnosis. You know, that even when I brought it up to her, she was very much like, oh, yeah, like it could be possible. You’d have to see someone else to, like, take that step. Well, now, this new person doesn’t know me from Adam and is very much like, well, I don’t know. I’m going to have to really see.
Callie [00:39:26] It’s like you can’t win, right? You’re either with someone who’s like, oh, no, that like I don’t like to focus on that. And then when you actively try to get help, people then look at you like you’re trying to like take advantage of the system somehow. Which I don’t get, it makes no sense. What would I be taking advantage of?
Nichole [00:39:52] There’s a huge barrier to entry that just is, I want to say it’s understandable, but I don’t think it is. I don’t think it is. If you have people around who are trying to figure out what is wrong with them, then I don’t think that they’re taking advantage of the system by trying, thinking that something is them and then maybe it ends up not being them. And yet the default attitude around this is that, oh, like you always think you’re something, you’re trying to get away with something, you’re trying to have a label so you can get away with things. It’s just like very different.
Nichole [00:40:30] I’m going to make like a big leap here. But like in my brain, it feels the same way as when I would try to have conversations about being like an anti-consumption vegan and how people would be like, oh, but there’s so many people out there that, they just want to get away with eating animal products, like they just like want to do it. And it’s like, why is your default position thinking that people are like trying to get away with something? And like, can we can we interrogate that, please? Can we deconstruct that please. Because like what are they actually getting away with? If someone’s vegan, using the vegan label, and like eating animal products, like ok, you know, like yeah, maybe it sucks, but also there’s like a million fucking situations during which I would think that that was fine. And I know I just blew everyone’s mind if you’re new around here. But like, I don’t think anyone’s new around here. But, like, it’s the same kind of thing to me. Like, okay, so maybe there’s a group of people who are trying to get ADHD meds who are drug seeking, actually. Doesn’t that mean that they have addiction issues? Like, do you see what I’m saying?
Callie [00:41:44] Which also means they need help.
Nichole [00:41:47] Doesn’t that mean they still need help? Right. And you’re gonna take that… Girl, I have so many thoughts the same time.
Callie [00:41:58] Go for it, go for it!
Nichole [00:41:59] Like, do you know how many times I’ve had people push pain meds on me when I did not need them? So we have an entire industry creating addiction around these things. But then if you’re a person who’s saying I think that there’s something wrong, I need help, then all of a sudden you’re a drug seeking, you know, person who needs to feel like there’s this immense barrier in front of you for you to get the thing that you need. If I’m in my fucking 30s and just now finding out that my brain works differently and there’s a pill that might help with the struggles that I have, give me the fucking pill. Give it to me right fucking now. Do you understand? I’ve lived over three decades of my fucking life struggling like this. Give me the fucking medication, you absolute asshole.
Nichole [00:42:50] Because I know if I was in here with something minor like I have been before where I’ve had like a UTI, I but I didn’t really have pain with it. I had like blood in my urine. TMI. Get over it. Welcome to the Bitchy Shit Show. And you know, I have this doctor asking me if I want fucking painkillers for a condition which is not causing me pain. Right, so that will happen. They’ll dope me the fuck up for my back problems on painkillers and muscle relaxers, and no one’s trying to actually fix my back or tell me how to do it. And I have to find out from like other alternative health care workers, like how to strengthen other stuff so I don’t have back pain. But I come in and I’m like, oh, and I’m obviously speaking for Callie here, but like, I may have ADHD and I might want to explore my options with medication. And now you’re gonna treat me like this?
Nichole [00:43:46] And I don’t even want to say like a junkie because we shouldn’t treat junkies like junkies. We shouldn’t call them junkies. Right. So, like, it just never ceases to amaze me the way that this system just puts you in positions that it then just absolutely like dehumanizes you for. Over and over and over. If someone’s struggling with prescription med addiction, that is on the pharmaceutical industry. And that is also on our fucking horrific late stage capitalism hellscape that we’re always railing on about giving people, you know, these issues and not giving them help to get out of it, not giving them proper support, stigmatizing it, etc.. So you have a person who is just like, hey, I just found this out, and it kind of answers like every horrible question I’ve had about my entire life. And maybe I just want to talk about my options. And this person’s like, I fucking see you, I fucking see you, and you’re gonna have to, like, crawl over broken glass for me to help you. Because maybe you’re one of these people. Maybe. It’s fucking ridiculous.
Callie [00:44:58] I feel my soul being healed by that rant you just went on. No, and all I could think while listening to you talk was how much our society is so fundamentally opposed to consent. Like, I’ve been seeking help my entire life for numerous different things that I now find could all actually be stemming from the same fucking problem, and no one ever even brought it up. I had to find out about ADHD from a fucking Tik-Tok video, a 30 second Tik-Tok video by some woman who is just on the Internet, who has ADHD, who’s trying to help other people realize they have it and bring it up to the therapist that I was regularly seeing on a weekly basis for like two fucking years who never mentioned it. Never mentioned it. Right, even though it would explain so many things. And then, yeah, it’s like so people don’t want to give you…
Callie [00:45:58] This fucking problem with consent. It’s like because someone else didn’t tell me, I’m actually asking and that makes it seem bad. They’ll fucking throw medication at you all the time. I’m always like, I don’t actually like taking medication. I have like of weird mental block with taking medication. I also don’t swallow pills very well, so I don’t fucking like it, right, and people are always like, oh but you have to take the medication if a doctor puts you on medication, you have to fucking take medication. And now that I’m like, hey I may actually have ADHD, and they’re like, are you doing this because you’re drug seeking? And it’s like, no, I’m fucking not!
Nichole [00:46:37] Right, you don’t even know if you’d want to, but the fact that she was all on your fucking shit about it before you even got there.
Callie [00:46:45] I even told my therapist when I was telling her I thought I had ADHD and I was like, but I’m conflicted about this because I feel like one of the expectations is if I get a diagnosis and I don’t do anything about it, like by taking medication, then it’s like then there’s a whole stigma around that. Right, oh, now you actually know what the problem is and you’re refusing to fix it? So any, like, negative behaviors you have, it’s like your fault for not taking care of them. Like solving it through drugs. So I was even like, I don’t even know if I’d want to take medication. And then she was like, well, I can recommend you to some people who would like be able to do an evaluation. But like just to let you know, like people take this very seriously because they’re like trying to weed out, like, drug seeking… Like she gave me this whole fucking thing about drugs seeking it’s like I just told you, I probably don’t even want to take drugs. And you’re still putting that fucking nugget of, like, insecurity in my head that people are going to be screening me.
Callie [00:47:48] And also, I’m just honestly as an anticapitalist kind of surprised that anyone’s, like, worried about drug seeking with these stimulants because I’m like, isn’t the fucking Holy Grail of our culture… Like literally coffee is like baked into our culture, right?
Nichole [00:48:07] Thank you.
Callie [00:48:07] Like people are always like fueling themselves up with stimulants so that they can, like, do their jobs, do their schoolwork, like take care of their kids. I mean, how much of a fucking cultural phenomenon is just like work culture tied to like bad, shitty foods that you’re eating to self soothe because you fucking hate your life. And drinking coffee. Like drinking coffee is like a personality trait. I’m literally drinking it right now. And then these people are going to act like…
Nichole [00:48:42] Sorry, I just thought, is that your version is like I eat tacos all day, every day. Is that on your Tinder profile? Coffee is my personality trait.
Callie [00:48:51] Yes, yes. Ugh, so I mean, I don’t obviously agree with it at all, and it made my blood boil too when you were talking about the process for you to get a diagnosis, but at least in like the understanding the fucking late stage capitalist hellscape we live in, I could understand why they would like, it’s like when you always talk about how people will say, like the Social Security Administration and those sorts of things, like they’ll always like give an automatic no because they’re hoping to discourage people from trying to get benefits. And they do, like people will hear that “No,” and not know that they’re supposed to, like, keep fucking pushing back to try to actually get, which like, don’t fuckin get us started on that, it’s so fucking ablest and shitty. God, I forgot, I was gonna say. Bring it back. Bring it back.
Callie [00:49:43] Oh, but at least with like autism, if there is some level of, like, support, right, like if then you’d be considered like officially disabled as far as like government assistance and government benefit goes, then I could understand this, like, scare tactic of making people feel like the process to get a diagnosis is gonna be fucking hell. Like it’s going to take thousands and thousands of dollars. It’s gonna take months. You’re gonna have to find your old records. Like there’s just a lot, right? Like, I could then kind of understand why they scaring people away. I don’t agree with it, but at least by their logic, I could understand why with this fucking culture of, like, bootstrapping yourself through life.
Callie [00:50:28] But with ADHD, I was like, I don’t understand what the fucking benefit is. Like it doesn’t get me anything except potentially a drug, which is honestly not that different than like the drugs that we all take all the time. Like the legal drugs, like everyone is self-medicating themselves all the time through like caffeine and energy drinks and those fucking five hour energy shots and the natural caffeine thing, like there’s always some new fucking diet pill coming out that’s like jammed full of stimulants, right? And then you drink alcohol and you take sleep aids to go to bed because everyone is so fucking, like, fucked up their cycle.
Callie [00:51:09] So I just was like, I don’t even understand. Like, I don’t understand why anyone would be saying that. Right, like, oh, so I’m potentially coming to you for a diagnosis to make myself more efficient as a worker and you’re treating me this way? Like I fucking hate it here. I don’t get it. I don’t get it. I thought that’s what you wanted?! I thought you wanted me to be an adult who was like this mindless drone who like, could just do their dishes and pay their bills on time and like, showed up to work on time. Like, I thought that’s what you wanted. Why are you giving me shit for this?
Nichole [00:51:47] I know it doesn’t even make any sense. And it’s like a legacy of being ignored and written out. Right, like it’s this legacy of like sexism and racism and all this stuff that like if they don’t catch it when you’re a kid, which they’re not inclined to do because the whole thing is structured around someone who isn’t you. Right, like someone who doesn’t look like you.
Callie [00:52:12] Right.
Nichole [00:52:13] Then you get to adulthood and now you’re just some whiny, lazy, fucking bad citizen who’s out here trying to make excuses and get handouts and get drugs for something that you should have just bootstrapped your way through. So there’s no hope. It’s not to say that people who got diagnosed when they were kids, like, necessarily have it easier either. They have their own struggles. You know, there’s so much stigma against diagnoses. Like I think I mentioned this maybe on another one, but another episode, but I saw on Twitter, someone I follow on Twitter said like, oh, I came out as autistic yesterday and I lost like twenty five percent of my followers literally just by saying, like, hey, by the way, I’m autistic, like, that’s me. Like, people have such a stigma around this kind of stuff.
Nichole [00:53:07] And I get like to have a bit of generosity in my rage today, I do understand why there may have been like an anti-label movement, because people get put in boxes and then they get stereotyped based on those labels, and a lot of people might miss out on certain opportunities or, you know. And I can understand that, like, ok. Oh my god. So here’s the thing. Here’s the fucking thing that I can’t stand, and I don’t know if this is capitalism or the patriarchy or who is responsible. But we all have implanted in our heads, this like cop. Right, like, we all have implanted in our heads that like we’re supposed to always be this thing that is normal. And so if we dare think that there might be some explanation for why we don’t fall into this like white cis, heteronormative etc. etc. fucking box, then we’re made to feel like we’re just these whiny, like attention seeking people.
Nichole [00:54:16] And this whole thing to me really seems to somehow tie into positivity culture because I see so much fucking overlap here with, like, the whole idea of like, just know yourself, And just like advocate for yourself based on what you observe and like who needs a label and, you know, don’t worry about it. And it’s like, yeah, that’s cute, but when is the last time that someone listened to somebody with needs in a workspace and just said, oh, this is what you need? Sure, let me give it to you. Without that person having a fucking doctor’s note and the weight of like they ADA behind them to be like, I can sue your ass if you don’t fucking do this for me and if you discriminate against me. Right? Like we can’t just like namaste your way through shit.
Nichole [00:55:07] I can’t like even if I had been doing a lot of work to say, okay, these are things I’ve observed, like I’ve observed that when I go into social settings, it’s really exhausting. And I really don’t like being around loud noises or strong smells and chemicals and all this stuff. Or I could just tell everyone I’m fucking autistic and they get back the fuck off me. Right, and I could feel more empowered, like I can notice all this stuff about myself, but like, it’s not the same as understanding that my actual fucking brain chemistry is different. That my brain is wired different. My neurology is different. My body is different. Jesus fucking Christ can I just have that, please? Can I just be allowed to feel okay about who I am and, twist ending, actually be proud of it and actually be like really happy about it. And then these people are like, oh, you’re just trying to put yourself in a box. You’re just trying to be like, I’m autistic. Like they think that it’s going to make you not grow. And this is what I mean about the cop in your head, is that like, maybe it’s something else, but anyway, like I cannot fucking stand when people try to impose their will on you. And I think when you have medical professionals, adults, authority figures, etc., saying, I don’t want you to have this label because then I think that you won’t do the work to grow, to be more like the way that we’re telling you to be. Go fuck yourself, go fuck yourself.
Nichole [00:56:49] You are going to keep something from me because you’re afraid that I won’t keep working on my personal development if I have a label, that I’m just going to, like, sit in and be like, oh, I just can’t, I just can’t because I’m this thing so I’m just going to sit here like a little lump. You know what? I have every right to be a little lump, first of all, so go fuck yourself. But second of all, maybe this will actually help me achieve my goals. Have you ever thought about that? Instead of having everyone tell me, like, I don’t know why you can’t do this. Just try harder. Just try harder. Just make a fucking list. Just write it down. Make a list. Make a little checklist. And then everything’s gonna be fine. Guess what? It’s not fine. Maybe learn to not be an introvert. Maybe learn to like social settings more. Oh, you’re sick now and you’re like fucking literally dying and nobody knows why because you’re traveling and going to all these events all the time. Well, I don’t know, you should just like get on a better routine and eat better. Go fuck yourself.
Nichole [00:57:52] And guess what, all of you motherfuckers, I did quit my job and I cashed out my 401 (k). And guess what I’m being this year. I’m being a fucking lump and I’m loving it. I’m loving every minute of it.
Callie [00:58:01] And you’re thriving!
Nichole [00:58:02] And now Callie is gonna be like, you’re not a lump. But just let me have it.
Callie [00:58:06] I wasn’t gonna say that.
Nichole [00:58:08] But do you know what I’m saying like, I had a chiropractor say that to me once. I think it’s when I discovered what a highly sensitive person was and I was telling him, I was like, oh, I’m a highly sensitive person, I just figured it out. And he’s like, well, don’t like label yourself, like, you know, that this is like who you are and now you’re in a box. And it was like, first of all, you’re providing care to me, so I feel like you should know these things about me, just like as a health care provider. And second of all, like that was his point was like, oh, well, if you label yourself in this way, then you might not, like, achieve your full potential. I don’t fucking care. I don’t fucking care if I ever achieve my full potential. I just want to live and not live in misery. That is my goal right now, because you know what? The last two decades have been unbearable. In the last decade in particular. It is amazing. I’m still sitting here. So like maybe let me work through that first and then we can talk about my full potential. Which, by the way, is none of your fucking business. It’s none of your fucking business. Stop defining me by these capitalist values. Stop defining me by what you think someone should be, Mr. White fucking chiropractor. Ok, Mr. Middle Class liberal. Jesus fucking Christ. Get out of my face.
Callie [00:59:28] Yes. Well, and they don’t understand that the label isn’t putting us into a box. It is like freeing us like these labels are cathartic. Like, I keep using that word, but it doesn’t even seem to convey enough. Like I just… To feel like you’re just fundamentally not getting it. You’re just fundamentally not able to do something that other people or your internal self is telling you should be able to do, like finding a label that then helps you find a path to like make accommodations, to figure out a different way to get things done. It’s like that is not a label. Or, that is not putting myself into a box. That is freeing myself from one. Like you don’t understand.
Callie [01:00:15] And the whole fuckin thing you were saying about how a lot of times these experts, these doctors, whatever will be like, have this like mental worry, sometimes they even fucking say it to you directly, but that they’re like worried you won’t do the work if you get the label. It’s like I have spent almost my whole life in fucking therapy, like I have been seeing therapies on and on since I was a fucking teenager. Like, obviously I am not afraid of doing the work. Like I have been trying to answer these fucking questions my entire goddamn life. I don’t understand this idea of like, oh, you just want a label so then you can sit back and be like, oh, I don’t have to do that. I have ADHD. Oh, I don’t… It’s like, no, that’s not going to mean that I don’t have to pay my rent tomorrow, like I’m still going to have to do all these things. But like obviously telling me for the last 30 years of my life to just go for a walk, just make yourself everyday go for a walk. Why aren’t you able to just put yourself on a routine where you can, like, go for a walk? Like, why can’t you just go for a walk? Like, why can’t you just…
Nichole [01:01:28] Just make a list. Just make a list.
Callie [01:01:30] Obviously it’s not working! Like obviously. That, just you saying the same fucking basic advice to me isn’t actually helping me do anything. Obviously if I could just eat the way I should then I fucking would. Don’t you think I would. Do you think I want to be in here? Do you think I would have wanted to spend these thousands and thousands of dollars over the years on therapy, on trying all these different fucking diet plans, on seeing doctor after doctor and having so many people in my life, like, constantly fucking saying shit to me that’s like triggering an eating disorder. Like, obviously, if I could have solved it easily, I would have by now. I don’t understand. I don’t get it. It’s like it’s like you’re damned if you do and you’re damned if you don’t. I don’t understand what people are thinking. You know, like I’ve been seeing doctors, I’ve been seeing therapists, and no one’s ever suggested this. And now that I actually come up with it for myself, people are like, oh, no. Well, you know, we’re gonna have to just really evaluate. And it’s like. I shouldn’t have even had to come up with this!
Nichole [01:02:37] Like what have you been doing. What have you been doing this whole time?
Callie [01:02:42] Right! I don’t fucking get it. I don’t get it. Like I… This diagnosis could mean that I start to actually find ways, like ways to rearrange my thinking, my life, whatever, so that I can do all the things that I’m supposed to be able to do. And now people are like, giving me shit for that. I don’t understand. Isn’t this what I’m supposed to be doing, though? Like, I don’t get it. I don’t know, man. And then you have all these fucking yahoos on the internet that are like well if you haven’t gotten a diagnosis from an actual doctor then you’re being irresponsible or being anti-science or you’re a conspiracy nut or oh, you’re just self-diagnosing, that’s like really irresponsible. And it’s like I don’t want to be self-diagnosing. But I also didn’t want to spend the next 30 years of my life having all of these unanswered fucking questions about myself. Like, it’s not that easy.
Callie [01:03:47] Like for me, this doctor charges like $400 an hour at an uninsured rate. And she said, I think it was at least, at least three sessions to which, like Nichole had brought up, to which point she’d want to like talk about everything going back all the way to my childhood, which like gives me fuckin anxiety because I barely remember anything of my childhood. Thanks childhood trauma for that.
Nichole [01:04:15] Same.
Callie [01:04:16] And potentially want to talk to, like, friends and family members, and have them come in and answer questions and then do group sessions. Or then we all talk about… It’s like I am committing to like this whole fucking thing, all for a diagnosis at the end of the day, doesn’t really get me anything except potentially access to meds.
Nichole [01:04:35] Right.
Callie [01:04:35] That I don’t even know what I want.
Nichole [01:04:37] Well and also, like, that was the thing, too that pissed me off because both of my alternative health care providers right now, when I told them, they were like, doesn’t really change anything for me. And it and at first I was like, okay, I kind of get that. But now I’m like, fucking mad because I’m like this like taps me into a community. Right? Like, I can go find my people now versus before where I was just grasping at straws and like I was in so many different, like chronically ill disabled communities and like, I am that, but like, it never quite fully resonated. And now when I watch autistic stuff or talk to autistic people, I’m like, oh, my God, this is it. These are my people. So, like, just the fact that we don’t have access to community without a label, right?
Nichole [01:05:27] And also, like, there are just things. it just concerns me if you’re providing care to me in any way, and you just like, don’t care about this. Like, this is one in 68 people. And I think it’s actually a lot more common than that to say maybe one in 50 people like are having an entirely different experience of the world. Our bodies are processing sensory input differently. Our brains work differently. My brain patterns are different from other like female brains. Like there’s just a million fucking things and like, none of that factors in for you? None of that like is relevant to the care that I’m receiving? And even if it’s not like it’s highly fucking relevant to how I process my own experience, it’s not a lot different even though… whatever you’ll hear it.
Nichole [01:06:22] It’s not a lot different to me than like my gender identity because, yeah, I could be out in these streets just dressing however I want, doing whatever I want and not labeling myself as like not cis, but like obviously it’s really fucking important for me to understand, like to have access to labels to explain my experience in the world and then to go find community that has similar experiences. It has been fucking huge to me to like read trans stories and like hear from other like non binary and gender queer people and be like, oh my god. That’s my experience. That’s what I’ve experienced my whole life. And like, this is a thing. And now I understand it better. Yeah. Could I have just known myself deeply enough to be like, oh I don’t need to label it, I just like know, this is the thing? Sure, I guess. But that’s like an isolated experience. That’s like a solitary experience of the world. And that’s not what I want. And that’s not what a lot of other people want. A lot of us need community. A lot of us need like shared experiences. A lot of us we’re fucking gas lit and abused as children. And we need the external validation of something like a fucking diagnosis.
Nichole [01:07:38] Do you know my whole life, my dad was like, I don’t know what’s wrong with you. It’s like you have old blood. Like he would say that to me all the time. He’s like, there’s just something wrong. It’s like you have bad blood. Like, I don’t know what your deal is, because even as a kid, I was tired all the time. I was sick all the time. I’ve always been incredibly clumsy and I’ve always been deeply ashamed of it. And how many times my parents, people I’ve dated, good friends of mine who are like, just be more careful. And do you know the clumsiness is actually a sign of autism? We’re just clumsy. We just have different sensory input. Our brains work differently. Our bodies work differently. And that wouldn’t have been good for me and my parents to know as a kid?
Nichole [01:08:21] My mom had child services called on her once because I used to get hurt all the time. And they thought she was like hurting me. But it was just I’m just really clumsy. But no, it’s all… Who needs to label it? It’s just, just know this about yourself and people understand advocate for yourself. Do you know how many times I’ve told people I’m just fucking clumsy? I just am. I don’t know why. I try my hardest. I can’t tell you how hard I try. All the time to not be clumsy. And I just am. At some point I end up doing something clumsy and then all of that fucking energy I wasted trying to not be clumsy. Too bad.
Callie [01:09:05] Or all the years I spent where my parents were just constantly trying to like put me on a diet and keep me there. And even therapists, like I even saw a therapist who claimed, I do not believe her, looking back now, who claimed to be an expert on eating disorders, who just kept saying shit like, you know, like just get out like every day. Just try to, like, go for a walk, like just get out, like, just try to regularly take walks. And I was like, I don’t know why, but I just can’t seem to like, get on a routine that I stick with. Over and over and over I told her that and her advice was basically the equivalent of like just fucking do it. And it’s like, yeah, if I could do it I wouldn’t fucking be here! Like, all the years of my life I’ve wasted where people were basically just like just like fucking eat right. Just like be on a diet, just like get exercise regularly, Just do it. Like, just do it. It’s not that hard. Just like fuckin do it. Guess what, if I could I would. But obviously something was going on and now I’m like, oh that’s very much tied into like the fact that ADHD brains have less dopamine so self soothing behaviors, like eating, tend to be very common, like having disordered eating patterns.
Nichole [01:10:35] Or like me, where I went into a very severe depression after my parents moved us when I was in sixth grade and my parents just kept telling me to get over it. But as an autistic person, change is incredibly hard. And I was struggling and nobody in my family fucking cared. So I was just left to, like, be depressed on my own with everyone just constantly telling me to get over it. Like Jesus Christ. And yeah, should my parents have just cared that their kid was depressed? Sure. But would it have been helpful for me at least to know why the move was so hard for me and maybe would have helped me process it better? Yeah, because I was very introspective. That actually would have helped me a lot. But instead, I just knew that I was really depressed and I couldn’t get over it, and my parents are mad at me for it, and that’s all I knew. That was my whole experience for like two or three years after that move was just being really fucking depressed, feeling really apart from everybody, not feeling connected to anyone at my new school and just being very quiet and to myself. And just that was how I tried to process it. It’s fucking ridiculous. It is ridiculous.
Callie [01:11:55] Not to like… Just indulge me in this for a minute.
Nichole [01:12:00] Of course.
Callie [01:12:00] But, because this is going to piss certain people off. But just this like whole… It just makes me think that even the like the experts, even the people that are supposed to be helping are just like that is so secondary even to, like, still upholding our fucking culture, right, of like not practicing consent, not actually practicing, like, making space for people to be different. Like the more I learn about this stuff – and again, it’s been interesting seeing both of us go through kind of similar experiences, but for different things, and like finding research and all that stuff – like how many more people than we think are like neuroatypical.
Callie [01:12:46] Like, it’s just interesting to me how, like, everything from the time that we are like little, little children up through adulthood is just telling us, like, everyone’s just like the same. Everyone’s normal, like this is how you behave. This is how society is like this is just human nature can’t be changed. And like gender is fucking set in stone and sexuality is set in stone and like typical like productive behaviors are just like fucking normal and natural. And like you can overcome disordered eating, you can overcome like weird behaviors and quirks and all of this stuff, as long as they’re not just like the cute ones that girls are supposed to have to attract the boys, but then drop immediately, right. Just all of these things. And it just makes me think like, because I can’t stop thinking about someone who, like, literally specializes in evaluations, saying this kind of shit to me and you and the experiences that at this very entry level point into this journey have been getting told. And the thousands and thousands of people that have also been told this. And it just makes me feel like all of this, like even making me… I’m being so fuckin scattered and all over the place.
Callie [01:14:04] But it reminds me a lot of when we talk about corporate culture and how they will say until their dying breath that the only thing they fucking care about is efficiency. But that’s actually not true because they do a lot of shit that’s like deeply inefficient. But it’s because those things like reinforce the culture that they want. So they’re ok with inefficiency as long as it creates, like the environment, right? That they want in their space, things like upholding hierarchies and upholding like the power dynamics and all of that kind of bullshit, right? Like they will fucking full on just waste people’s time, as long as they can do it in a way that reinforces the narrative and the culture that they want. And I keep thinking of that in comparison to like the experiences that we’re having. Almost like it’s more important that, like most people still continue to, like the most amount of people possible, continue to see themselves as just normal and able to, like, bootstrap their way through these behaviors instead of actually getting a diagnosis that will like, in a weird way, actually make them behave in the way that like the dominant culture wants us to.
Callie [01:15:16] Is making any sense? You know, I mean, it’s like it’s like, oh, this diagnosis could help you actually do what we keep telling you you need to be able to do. But like, that is almost secondary into like gaslighting you, into thinking that, like, everyone’s normal, like don’t look behind the curtain. Everyone’s normal and fine. And you can just, like, overcome anything with, like, you know, positive affirmations and fucking self-help books, you know. Because I don’t understand why you would put barriers up to people getting a diagnosis. I do not get it, especially when in the end, it solves the problem that everyone wants solved, which is that like we are the most amount of productive possible. It’s fucking weird. I don’t understand it.
Nichole [01:16:05] And I think like it makes sense because there is such a strong tie between diagnosis and, like, corporate culture, right? Like, there is like an actual connection there where your work is going to say, like, we’re not doing shit for you unless you force us to with a diagnosis. And I think it’s just, even though, like you were saying, well, if you make these accommodations, then I will be a more productive employee so like, why shouldn’t you want that?
Callie [01:16:33] Yeah.
Nichole [01:16:34] But I think the biggest reason, and it’s not a surprise to either one of us, is like that, yeah, capitalism does not plan on anything outside of like what is considered normal. It doesn’t plan for a variance, you know. It doesn’t plan for anything except everyone at full capacity all the time. So I do think it’s like a crack in the mask. You know, it’s like, oh, if I looked around me at work and realized that, like, a huge percentage of us are neurodivergent. First of all, we may all start finding each other and there’s gonna be some solidarity there. Right. It’s just like at my job, like I was one of the first people to get… I got a fibromyalgia diagnosis just so I could get a standing desk at work. And fast forward five years later, and like there were standing desks all over the place.
Nichole [01:17:35] And that’s what they don’t want. That’s what they don’t want. So once you see, like, oh, that person got a diagnosis and now they’re being accommodated in some way that’s improved their life that the company has to pay for, guess what? We’re all fuckin broken. We’re all fuckin dealing with something, and I don’t want to say neurodivergence is broken because I don’t think it is, but like I’m just saying, like, we’re in a thing where, like, probably most of us need some kind of accommodation. So if the like, crack in the dam starts, they know that they’re gonna be fucked. Like, who doesn’t have back problems nowadays? Literally, everyone has back problems. So if you start to have to accommodate someone for their back problems, you’re gonna be accommodating 50 to 80 percent of your workforce, because we’ve all been stuck in chairs, like, not moving like the way humans are supposed to move. And we’re all fucked up from it. And probably most of us are going home and like, replicating that behavior cause we’re exhausted and depressed.
Nichole [01:18:37] So I think it’s the same thing here. Like I remember after I found out about executive function, I went to the head of my department and I was like, hey, like I have low executive function and the way that we do a lot of things here is very difficult for me. So, like, can we make X, Y, Z accommodations? And she was like, oh yeah, absolutely. Her dad’s a neurologist, so she like, knew all about it. And she’s like, yeah, absolutely. But then do you think that the dynamic of the team actually changed? No. They were still all doing the same shit. And because it was me asking to be accommodated just as a human, it was like, well, we don’t have to we can just ignore this. And I don’t think it was even that conscious. I don’t think people were like, no, we’re not accommodating you. But I think it was very easy to be like we’re just gonna keep doing things the same way because that’s easy, right?
Nichole [01:19:29] If I had had formal autism diagnosis when I went in, do you think it would have been different? And I actually would have gotten a better working environment. Probably, probably. Those people wouldn’t have been better allies necessarily. They wouldn’t have, like, inherently worked differently, but I would have had a lot more power and they would have been afraid to not accommodate me. I want to give them a little credit. I think a lot of them also would have had more empathy or sympathy. But instead, it was like I was just kind of like the mad genius on the team where like I did really good work, but I was just very finicky about stuff. And it was just like me being eccentric and eccentricity is accommodated until it’s not.
Nichole [01:20:18] So, for instance, you know, I was allowed to basically work the way that worked for me. But anytime I had to go to a conference, I was told, like, you need to be out on the floor the entire time. You can’t take breaks. You should be talking to someone the entire time, blah, blah, blah. Like, don’t you think that knowing this about myself… Because I knew positivity culture, I knew my body, I knew that I’m an introvert and that I couldn’t handle loud events like that and without taking breaks during the day. And I know that a fucking hate small talk and all of that shit, but I could not get accommodated for that without a diagnosis. So this whole thing where we pretend that you can have whatever you want in life without a diagnosis is so bullshit, so bullshit.
Nichole [01:21:06] And then my last point that I have is that okay, yeah, best case scenario, every single thing that I need accommodated or to understand about myself in relation to autism, I have mostly figured out throughout the years, right? Like this all answered it and put into a package for me, like why all these various things. But most of them I’ve like picked up on and try to accommodate in some kind of way. But it took me decades to do that, where it could have taken a medical professional or a forum, like fellows in a forum reading a thread or watching some videos, literal minutes. What took me decades to understand about myself, and that is the greatest violence in all of this, in my opinion, it’s not just the lack of accommodation that I will never have without a diagnosis that you’re keeping from me. But it’s also just the fact that you expect me to expend this much energy, when already daily life is so hard to figure myself out, advocate for myself without the empowerment of a diagnosis behind me. And then for me to take years, decades in some case, to figure out things that you could tell me in minutes.
Nichole [01:22:25] And why? Why? So I’m not someone out here who’s not bootstrapping it hard enough for you? Because I know something about myself? And maybe that empowers me to say, fuck you, I reject this half of this capitalist bullshit? So the cost of that is you withholding information from me that will take me decades to figure out. That is incredibly violent.
Callie [01:22:51] It’s extremely violent. An unnecessarily cruel.
Nichole [01:22:58] It is cruel. Yeah, that is a perfect word for it.
Callie [01:23:01] All of this is…It’s so cruel and-.
Nichole [01:23:04] I’m worried you might be lazy so I’m going to keep this from you to make your life easier and better and to help your self-esteem, because maybe you might use it to be lazy, whatever that means.
Callie [01:23:16] And I just keep thinking back to your example of the standing desks. And I’m like companies will shower executives with money. The kind of money that corporations waste on things that make those at the top just feel better, right? Or like get perks. And it’s like, who cares if everyone wanted a standing desk? Like, I don’t understand why that’s like-.
Nichole [01:23:51] We should have them, they’re preventative if nothing else.
Callie [01:23:54] Well, and I remember hearing similar things at the last company I was at, like, you know, one person would come in and be like, oh, I’m, you know, having like carpal tunnel issues or whatever, you know, and they would need this, like, new kind of fancy mousepad or wrist… Something to help their wrist or whatever. And then everyone would start like, you know, the head of H.R. and some of the other managers would start to be like, if they ask for one, then everyone else is going to want one. And it’s like, it’s a fucking mouse pad. Like, if that’s going to keep your employees coming in here day after day, wasting their life at this pointless, fucking unnecessarily cruel and difficult existence, dealing with bullshit that should not be required of humans, then like fucking do it. I don’t understand how people get so mad about that shit. It’s like this job is fucking miserable. I know it. You know it. We’re only here because I like having a roof over my head. So like if one or two little accommodations is going to help me come in here, why would you not fucking rush to do it?
Callie [01:25:09] I just, it’s this like push pull that we see in everything, right? It’s like it’s the same thing with the diagnosis. It’s like coming from that same kind of attitude of like we don’t even want to acknowledge that people need anything. We don’t want to acknowledge that anyone is ever different, even if the end result of that will be getting what we actually want from you. It’s more important that we gaslight people into feeling broken and feeling shame over needing accommodations. It’s so fucked up. I just I will never understand. Like, you’re really going to deny that person a fucking special mousepad. For what? If that will help them stay on task and be more productive, I don’t understand. It’s like, listen, it’s either that or the fucking guillotines. I don’t understand how you all are being so fucking oblivious to all of this shit. It’s like we’re asking for so little. We’re literally asking for things to make it easier to do the things that you want us to do.
Callie [01:26:16] Like me getting this ADHD diagnosis would mean that I could actually fix some of the things that are causing stress for the people around me. That’s what you tell me you want me to do. Why would you keep that from me? Even if, going out on a wild like limb here, even if I don’t have ADHD and I get someone who gives me the fucking meds anyway, and it’s like, oh, what? So a med that’s actually going to potentially help me control my overeating and focus better on tasks that are boring? What is the fucking downside to that? I don’t understand why people would not want that. It’s like, don’t you want me to be this mindless drone that’s just able to, like, do all the things? And I’m being way overdramatic and putting a lot of judgment on these drugs, and I don’t mean it in that way. But you know what I mean? It’s like if I start taking something that’s able to fix all of these things that I should just be able to do anyway, it’s like, what is the fucking problem with that? But they only want you on drugs that like they give you. The minute you actually want it then it’s like drug seeking or negative or bad. Like we’ll throw fucking pain meds at you and get you hooked, and then like, fuckin blame you for needing the drugs.
Nichole [01:27:41] Right. Or we’ll put you in a culture that requires a lot of executive function and a lot of task oriented work and a lot of tedious work. and then we’ll blame you for wanting help to achieve that. And it’s ridiculous, like I got my doctors note, they did an evaluation and they gave me a standing desk, but they refused to pay for a, what did they call it, the mats that you stand on. So I was only able to stand for like half an hour, maybe an hour at a time. And then, like, my joints would hurt because I have very sensitive, like, joints and even like… Anyway, I have like really sensitive feet. And they were just like, no, go fuck yourself. Like, you’ll have to buy one. And I’m like, so now I have to spend money to use my accommodation properly. And they’re like, yes.
Callie [01:28:39] And that’s literally only about making sure that you know your fucking place. That’s it. That would not break the bank. They could have bought everyone two special mats.
Nichole [01:28:50] No, it’s like 30 or 40 bucks.
Callie [01:28:52] Right, and been completely fine.
Nichole [01:28:53] But for me, that was a lot of money and so I didn’t do it.
Callie [01:28:55] And why should you have to spend any money on your work accommodations? Like, you should not-.
Nichole [01:29:02] It was also out of spite. I was like, I’m not-.
Callie [01:29:04] Well, yes.
Nichole [01:29:08] It’s ridiculous.
Callie [01:29:10] It’s like more important to make sure that we’re all conforming and silently suffering than it is to like actually do… Like to actually, like, find ways to succeed. To be healthier, mentally and physically. And it just it honestly just makes me fuckin sick. Now the more I learn, the more I’m just like I cannot believe how fucking ableist and unnecessarily cruel this society is. Like, and everyone’s got like a thing, right? Like, whether your neurodivergent or whether you’re chronically ill or whatever. No matter what it is, it could even be something like relatively small. But like, I just keep thinking and getting a lot of, like, healing from what you said, where like everyone needs some sort of accommodation. Right, like everyone with something, whether they have a label for it or not. And the fact that that’s like shamed. And I think you’re right. I think it’s because, like, that would come before some like actual solidarity and people asking some, like, tough questions about this society and culture and our bosses and… I’m just so mad. It’s like it’s bad enough we have to actually suffer in the system. But I’m trying to find a better way to do it. And you want to shit on me for that, too?
Nichole [01:30:54] Yeah. Yeah, and I think there is a special focus on this against things that are invisible. Because, you know, at least if you can see it, then there’s some amount of force in that like you can see it so we have to deal with it. But there’s so many invisible things, like even when you were talking, I was thinking about even just being nonwhite in this country. Like people always say like being black is a preexisting condition. And that’s like very real. A lot of people have ancestral trauma. A lot of people have complex PTSD just from experiencing race. I shouldn’t say just, but like from experiencing racism every day. And so if we start, I think that’s a big part of it, is if we start opening the door to this stuff that you can’t see, because a lot of this is stress related. And a lot of it is, I literally just work differently than other people. You start accommodating that shit. It’s just like to them, and it’s true, it opens the floodgates to, like, having to really understand the invisible experiences of a lot of different types of people. And then we really have a reckoning on our hands, right?
Callie [01:32:21] Yeah.
Nichole [01:32:22] Then we might be attacking dress codes. Then we might be, you know, looking at all kinds of things that they don’t want us looking at. And it’s a cascade effect. If like we all see here that we all have something, then we have to create an environment where we all have to, and want to, accommodate each other. And then all of a sudden, capitalism looks a lot different. The workspace looks a lot different. And there’s more solidarity. I’ve talked about it a hundred times, but it’s just like when, you know, they’re awarding like Employee of the Year and it’s always this person never says no, this person’s like first one in, last one out, works weekends, blah, blah, blah. And if we understood how much of our workforce was disabled or needing, you know, whatever, just experiencing the world in a different way than like what we’re told is the norm, then we would have to start seeing people differently and rewarding different things because then we’d be able to see how fucking ableist that is. Not to mention just how ridiculous. Like, I shouldn’t have to give up my life for this job, for you to give me, like, a fucking trophy once a year. And maybe a check.
Callie [01:33:44] Yeah.
Nichole [01:33:45] But then we get to see, like, oh, actually the person who always says no because they’re taking care of themselves and because they say no, they do really good work. You know, the person who created their own schedule and was able to work from home to accommodate their needs and did a, like, kick ass job on that project last year, like maybe that’s someone we should be giving awards to and maybe that’s the kind of behavior we should be promoting. But that’s not going to fly. So. I’m done.
Callie [01:34:26] I hate it here. I just…
Nichole [01:34:29] It’s kind of the worst.
Callie [01:34:31] Yeah. It seemed like from the comments we were getting that this was all really resonating with people, which I’m sorry for.
Nichole [01:34:40] Yeah.
Callie [01:34:42] That always is like a mixed bag because it’s like in one case, I’m really glad that we can be speaking to something that needs, you know, that’s like tapping into very real feelings, especially something that tends to be hidden or is coming from a place that people usually have a lot of, like, shame around. But then I’m also like I’m just really sad to see how many people resonate with all this stuff because it should not be this way. But thank you, as always, for giving us the space to just be us, and ranty and we love a rantisode. It had been a while since we had done one. And yeah, it’s just been interesting since both realizing, coming across these diagnoses for ourselves. How it’s like shifting our view of things even further. You know, and just adding layers to stuff that in some ways we already kind of knew but it’s just really opening those floodgates. So, yeah.
Nichole [01:35:49] Yeah. All right y’all, well, we will be back next week. If you’re watching the video replay or on the live stream, it’s every Sunday at 12:00 p.m. Pacific Time. If you like this and you’re watching on YouTube, give a like, subscribe, ring the bell. Feed the algorithm with a comment. You can just leave an emoji. Give the algorithm a little nom, nom, a little snacky snack, helps us out. And if you’re listening on the podcasts, thanks. It’s our original platform and we love it so much. We can appreciate even more now how we do not get censored on our podcasts. And we can count on it being there every day, which is really nice. All right y’all, we are going to hang out briefly, a little after party, but we will talk to the rest of you next week.
Callie [01:36:48] Buh-bye.
Nichole [01:36:48] Bye.
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