How To Advocate For Yourself At The Doctor When You Have ADHD


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how to talk to doctors about adhd and hormones

In this episode about how to talk to doctors about ADHD and hormones, I chat with Jenn Welch, host of the LadyHD podcast. She shares what it’s like to struggle with dermoid cysts and provides some excellent advice on how to communicate with various doctors based on (unfortunately) tons of experience.

Highlights:

  • When and how Jenn was diagnosed with ADHD.
  • Jenn is a self-described “grower of giant ovarian dermoid cysts”. She tells us a little about that.
  • Jenn shares what it’s been like juggling multiple conditions and doctors. She has some sage advice for others doing the same.

If you like this episode, be sure to subscribe to The Adulting With ADHD Podcast and leave a review! 

IMPERFECT TRANSCRIPT

Sarah 02:49
This is the adulting with ADHD podcast, self empowerment for women with ADHD. Today, I’m very excited to welcome Jen Welsh host of the lady HD podcast. Hi, john. How’s it going? Hello, how are you doing?

Jenn 04:51
I what, uh, what morning. I’m just very excited to be here. And to be on zoom at tie on time and I got a shower in 10 minutes ago. And you know, everything’s great. We’re doing great. So happy to be here.

Sarah 05:07
Yeah, I am. I am freshly out of the bathtub as I just said, my bad. I think we both were so like focused on getting here on time. And I think we could have used more time. But we’re here now I know. I know, especially since I think we have a big chunk of time blocked off. And we’re both like, probably going to take the smallest amount and then like, yeah, it’s fine. Everything’s great.

Jenn 05:29
Look at us, go.

Sarah 05:31
Go us. I mean, just, I don’t know about you. But for me, just the fact that I’ve been able to produce a podcast week after week is a huge accomplish. Oh, my God, it’s amazing. It’s I have had to learn how to, you know, set real those realistic expectations for myself. And also, except that they change on a day to day basis, like on like today, it’s like, I’m in my seat at 1pm looking somewhat presentable for a video podcast recorded. Right. And like, yesterday, it’s like I stood up, you know, like, that was like my baseline yesterday. Like, every day it changes. And then you know, but then other days, it’s like, I did everything. So, you know? Yeah, I’m right. Yep. Yesterday, I was looking for a container, a shelving container to put beside my couch, because the thought of standing up was so exhausting, that I could store all my things without having to get up. So I totally feel you, you know, and I yeah, I’ve been a grown up with roommates for years now. And I’m actually in my first studio apartment. And but being a grown up with roommates, you start doing that, right, like, I’m like, the kitchen is like a block away. I’m just gonna, like stop drinking cold soda and just have warm cans. And I’m going to like and have them in my room. And I’m going to like keep like my peanut butter by my bed and like all of my snack shells and like, all this stuff. And then like I had a friend actually over this weekend to help me He’s like, you need to get that apartment settled. It’s nice. It should look nice. And I’m like, Thank you Please help. Um, so he came by and he like, helped. And one of the things as we were like, putting stuff away, he’s like, so do you actually like room temperature? coca cola? And I’m like, I don’t think I do. You’re right in the fridge is right there now. So. So it’s like, I don’t know if you can see behind me, but there’s my messy bed. And then my fridge is right there. Nine. It’s like, no reason no reason to have form soda anymore. So I mean, yeah, I love it. When you find things like that. It’s like, that’s the treasure in our life. The buried treasure is. So when were you diagnosed with ADHD? And how did that come about?

Jenn’s Diagnosis Story

Jenn 07:54
Um, I was diagnosed when I was 28. I it came about after years and years and years of struggling I was very much like my psychiatrist to diagnose me it was like, Oh, you’re a textbook lady with a woman with ADHD case. You know, I was just very daydreaming as a kid and kind of always flighty. But I was very, I was very smart. So I coasted through a lot of things. Like I coasted through high school, and then got to college and things fell apart, right? Like, computing working. And I and then I just was like, Well, that was just me going through my college years, you know, whatever, right. And then I got into the, that I got into the workforce, and I was like having to show up at 9am every day and like kind of just like, ah, like constantly just like being like frazzled and whatever. And then after, you know, however many years I was working in the film industry, and I just really kind of like, hanging from the ledge by my fingertips, you know, trying to hang on, and I got an opportunity to work, um, as like an independent contractor self employed, doing very, like, isolated by myself sort of deal. situation. Yeah. And I was like, This is gonna be great, because now I don’t have to worry about anybody else. And I’ll get all my work done. And I don’t have any of those distractions. And then no work got done. And I’m like, crap, it’s me. remembered. Sorry, it’s an interesting way of finding out. I haven’t heard that one yet. But that would be a humongous red flag. Yeah,

Sarah 09:42
yeah. Yeah. It’s like even with nobody around the works, not getting like I have nobody to blame. And I remember like, from the time I was around, like 15 or so. I think that’s when so that was like, 1995. That’s when like, I’m 88 He was really kind of being talked about more in like things like the Sunday newspaper, parade, magazine insert and stuff like that, you know, right. Right. And, and so I remember way back when like taking a self test, like just being like, Huh, this like reading an article and I’m like, this sounds like me, and then like taking a self test and like, checking off every box, except for like the hyperactivity, you know, right. And then being like, a mom, look at this, and my mom was just like, oh, everybody’s like that, which my mom I think also might have ADHD. Okay, so, you know, so yeah, her everybody’s like that. Right? Um, yeah. So yeah, so it’s like, this been this thing in the back of my head for years. And then, you know, kind of finally realizing at 28, putting the pieces together, and then getting that diagnosis was like, Oh, my God, I went from somebody who, like, had just all these jumbled ideas and like data to somebody who could actually like, sit down and execute on those ideas or like, actually take steps forward in a career and actually be like, I want to be a comedian and then do things to like, make that happen, right, instead of just being like, so yeah, so that’s kind of how it happened. That was a really long answer. I’m sorry. 28 when I was diagnosed,

Sarah: oh, no, no, no, no, there are no sorries on this podcast, we we ramble we interrupt we we have ADHD?

Jenn: Good. I tried to be the same way on my podcast, but I know that we have a topic and we have to and I’m watching the time, but also I forgot that I started recording like five minutes before we started talking so fine. Oh, yeah. Fine. All right. Good call looking at the time. I totally was having so much fun. I I didn’t even think about that.

Hormones & Dermoid Cysts

But yeah, so yeah, as a as a segue to the topic, we were going to talk about hormones and dermoid cysts, all kinds of fun stuff. I just I have one I have not a dermoid one, but I have a cyst two, I just got I should I should name it, but haven’t. You should your ovaries worked hard to make that that’s what I that’s what I feel like with mine. I’m like, my ovaries really took it upon themselves to try to build something that you know, it didn’t come out, right. They try. Try it. Oh my god bless her ovaries Oh, so I have I actually had a Joe I don’t remember exactly how it went. Because it’s been so long since I’ve done comedy. And I also don’t like doing verbatim jokes on podcasts because that’s just a hack. But, um, but I did. Just it’s like, let me run my set. But they so I yeah, I grew these on both ovaries, it ended up that I had to dermoid cysts that are like so basically a dermoid cyst is like germ cells that like decide to become things on their own. So they tend to be like, filled with like, um, like hair, and hair and teeth. And sometimes there’s like adrenal glands, or like brain cells, or things like really disrupt your system and, and like bone and stuff like that in there. And it’s just this little like, so that was basically on each ovary I had like this, they said it was like the size of a baby head on each ovary. Jones. Oh, honey, oh, my joke. My joke wasn’t like, you know, those like, okay, so you know, like in elementary school, where they’d have give you that test where it’s like, a list of instructions. And instruction number one is read all the instructions before you start. And then it’s like number two is like circle. line number three is like, bah, bah, bah, like, whatever. And then the very last one is like, ignore instructions to through whatever that like, whatever, like, whatever. Right? So you were supposed to do something. It was it’s basically like a red flag alert for the kids who do have ADHD, you know? Um, right. I feel like my ovaries failed that test. My boys were like, we’re gonna make a baby. Yes. Here’s some fat like, that’s what I feel like happen. Like, we know that this belongs here. And we know that that belongs here. And like, it’s like when I cook, you know, get nailed it. Yeah, exactly. We do we are like an ad. It’s like a feminist with ADHD is what my ovaries are. They’re like, we don’t need a man. And we don’t need directions. Right? Don’t tell me how to make this. Yeah. Oh, wow. Yeah. So how happened? Wow, how long ago was that?

Jenn 14:41
So I was diagnosed with those in August of 2018. I probably felt that something was off around a year earlier, but just with one of the things that like I think, isn’t really talked about a lot and this is something I really had to deal with because just like a year earlier, January of Well, okay, yeah, so in January 2018, I slipped in the shower and hit my head and I ended up with, um, persistent concussion syndrome. Where it just like, I had had concussions earlier as like a Catholic cheerleader growing up and stuff like that got dropped on my head a lot. But um, yeah, I, I ended up like, really, one of the hardest things with that was suddenly all of the coping skills that I built up over the year to deal with my ADHD were just gone, my brain could only do like, the most basic things, like when it was the most bad, I would have to as I’m walking to the bathroom, keep reminding myself that I’m walking to the bathroom. Like, that’s what I would like, that’s how, like, low functioning zero. Yeah, yeah. Like, and now we’re chewing. And like, I couldn’t really talk and I lost, like, I have a very vivid, like visual imagination. And that was just gone. Like everything inside my brain was just black, because these are all like higher function, brain activities, you know, being able to mask things and cope with things and like whatever. And so I had to sort of, like rebuild a lot of stuff with that. And I really had to, like navigate the healthcare system on my own with like this broken brain and with like, really unmasked ADHD. And so it was, like, really intense. And then you end up I realized, there’s some other sort of, like, non related concurrent health issue happening, and I’m like, I cannot deal with you right now. You know. So it’s like, I end up spending, like, ignoring it for more time. And then they, I end up with, you know, two grapefruits in my abdomen.

“Trying To Navigate All of This With An Executive Functioning Disorder”

But, um, yeah, but, I mean, I think that, that, trying to navigate all of this with an executive functioning disorder, because, you know, I had been through a lot of speech therapy and a lot of what’s it called occupational therapy and therapy therapy to sort of deal with the concussion stuff. And I had people helping me and everything, but even still, like, the first time I went in for my surgery, I had, the initial surgery was in September of 2018, it didn’t even occur to me that like, I would need to have stuff available to me, while I’m at home recovering, like, I would need to have clean laundry, and I would need to have some food in the fridge. And I would be to have people lined up to walk my dog, you know, like, it didn’t even that stuff didn’t even like, because that’s stuff, I struggle with feeding myself Remember to feed myself every single frickin day, ya know, and when just focused on like, I’m about to have my body cut open and have teeth removed from my stomach, I’m not thinking about that, you know, and I feel like, maybe people who don’t have this situation, I have a little bit more forethought, or like, plan. Um, so that was like, that was like a big thing. And then after that, it sort of like I ended up with complications. I ended up needing like an emergency surgery. A few months later in January, and then a final surgery in May of that year to continue removing more stuff, they had, like ruptured the first time around the second surgery, the surgeon was like, I opened you up, and you were just full of hair. And I was like, Yeah, but like, having to navigate all of this as a person again, with like, an executive functioning disorder was just like, every road bump, you come up against, kind of like triggers that, that like rejection sensitivity, dysphoria, sort of feeling overwhelmed, like, Oh, it’s never gonna happen, like, whatever sort of, you know, ah, I’m feeling and, um, you know, it’s like, having to navigate all of the insurance stuff, having to know, you know, this and that and like, you know, I’m just like, a person is on my own. And I had to, like, I had people who could help me up to a certain point, but, you know, there’s certain things that only I can really do.

Sarah 19:02
Yeah.

Jenn 19:02
And so that was like, a lot because it was, it was basically nine months of, you know, being like, the first surgery, it was, like, clear, it didn’t like, it was almost clear immediately that there was like, something wrong afterwards. Um, but again, like, trying to, like, vocalize it and advocate for myself, and explain and get myself to the places where I need to be to, like, kind of deal with this, you know, and remembering to, like, ask certain questions and remembering to like, all of that stuff that you need to like. I mean, it’s it’s stuff that’s hard for somebody who doesn’t have ADHD. Yeah, going through all of this. Yeah. And, and I almost feel like, you know, again, it’s like, as always with ADHD, it’s kind of like that, like, kryptonite and superpower at the same time, where it’s like, Yes, I have all these executive functioning issues or whatever. But I also have my hyper focus. And right now I’m hyper focused on figuring out what the EFF is going on in my abdomen. And so when I am talking to the doctors, I’m able to say, I’m able to point out things or say to them, like, like dermoid cysts don’t normally grow back quickly, right? So normally you take care of them, they’re gone, right? Most women have them. They just don’t know about them. You might have a little baby teeth in your belly. Right? Who knows? It’s not if it’s not causing problems, you don’t know. Yeah. And so they don’t normally grow that fast. And so when, you know, a month after my first surgery, I’m back in the ER, all the doctors are saying, well, there’s no way that you have another dermoid cyst, there’s no way and I, you know, have done enough reading at this point to be able to say, I know that there should be no way that I have another dermoid cyst. However, I am having all the same physical symptoms and sensations, and I’m in a lot of pain. And I need you to give me an ultrasound. Because when you do, you will see that I still have dermoid cysts in there, right? Like, yeah, even if they didn’t regrow, there’s something that somebody didn’t get, or something that somebody didn’t clean out when they were supposed to, right. And they ended up finding that I still had a large one, like, behind my uterus, right? That like nobody had noticed before. So that was like the emergency surgery was like getting rid of that. So it’s like, having the hyperfocus and like, which gave me the knowledge to be able to like, not even be able to say, I know that this is this. But to be able to say, I know that this shouldn’t be the case. Like I know, what you’re telling me is, like, for most people, the truth, but because otherwise, you hear otherwise, you hear that? And you’re like, well, I guess it’s not that then, you know, so it’s like being able to go into these situations with information is like, so huge.

“You Have To Advocate For Yourself”

And as much as people are like, don’t be Dr. Google, you have to really, I mean, especially as women, especially for women of color, like you have to advocate for yourself. I mean, there’s certain things that I would say to my doctors every time I had to because I had to go to the ER, basically on a monthly basis throughout all of this, just because I would have like, once a month, I’d be in so much pain. I was also like, bleeding constantly and like becoming a anemic. And it was like it was a mess. Um, and I, I had a schpeel that like I I was like this is this is what I say when I go in. I say I’m in recovery. So don’t give me any pain meds. You know, I’ve been sober for like five and a half years. I graduated. Thank you, thank you, oh, self medication for PTSD or for ADHD. PTSD is the thing. So if you’re having, if you’re struggling with that, maybe look into that or not, it’s up to you. But so it’s like, I’m in recovery. I have PTSD. So please tell me what you’re touching me if you’re going to be touching me. And also like, here’s my surgical history and everything that’s going on, right so that I don’t have to, like beat around the bush with anybody or like wait for them to notice something and or hope that they like whatever. And it’s just like, and then I present and focused. And I’m not thinking about that thing. Like you know how we do when it’s like you get into a situation where you’re like, I was I’m supposed to be on a podcast now. But I was just thinking about how I have pizza on the stove that needs to go in the fridge.

But so now I’m on the podcast, but all I’m thinking about is the pizza. Yeah, so it needs to go fridge. Right, right. And it’s like, you need to just put the freakin pizza in the fridge. So I don’t have pizza on the stove that needs to go in the fridge. I specifically chose something that I knew wasn’t an issue so that I wouldn’t like I was about to offer like, dude, wait a minute, but I know what you mean. Yeah, so you got to get that stuff. Like, it’s like you have to know how your brain works enough to be able to get that stuff out of the way so that you can be present and focus and not sit there worrying. Like, are they gonna notice that I’ve had surgery before? Are they going to touch being and then I’m going to get triggered? Or are they gonna like I thought it would be it but it’s like, I just like to know what they’re doing. Or like, you know, are they going to try to give me a vikatan or something and then I’m going to be like, ah, right like so it’s like and yet another way and it’s so funny like by like my like ACR visit I started like getting the same doctors, right? And same shift. And they’d come in and I’d be like, Hey, I just FYI, I’m in recovery, or whatever and the one like this one doctor was like I remember you. Yeah. You have PTSD. And you had surgeries already. I thought of that. And I was like, Yes. And she was like, so excited that like, apparently a lot of people don’t do that, you know, right. Like, say that stuff like right up front. And it really was helpful, like, just sort of like getting that habit. So that’s like something I’m throwing out there to everybody. I basically do it like, at all doctor’s appointments now at this point, because I’m just like, this is what’s going on. You need to know all of it. Right? Before we can address anything.

Sarah: Oh, I am so happy. We went down this road, because I mean, there it’s this whole unexplored, like you said, not a lot of people talk about, I think, your system that you’ve come up with out of survival. I mean, I feel like it could be a template for all of us, because I know I’ve had to do that as well. And I mean, especially if you don’t have anyone in the room with you. And it’s and it’s all on you. And I’ve had so many times where I’ve forgotten something, and I’ve tried to call or message a doctor and they and getting dismissed because you know, you already had your 15 minutes in the room, you know, whatever.

“It Was A Resource I Didn’t Even Know Was Available”

Jenn: So I love this idea of just having it all together before you even walk in because, yeah, it really it really made a difference. Especially like yeah, dealing with the surgeries and all of that stuff and assignments. And yeah, and the medicines and like I ended up a one of the things I’m really proud of is so the third surgery. The surgeon I had for that one, she was amazing. I love her so much. And she I was only able to get an appointment with her I was having a nightmare surgery I kept running up against like, nobody has availability, nobody takes my insurance off. And then the the doctors network that I’m with somebody mentioned to me, Well, why don’t you talk to the social worker? And I’m like, who is the social like, What? They had a social worker on staff, I went and met with her she called this surgeon’s office got me an appointment the next day for a console and I was in for the surgery the next Tuesday. And I was like, oh my god. It was like a resource I didn’t even know was available. And the hospital. This was through. So I’m in New York City. So this was through NYU, and it was the network of she was with she was with the concussion center. But I think they have they had me talk to social workers in the hospital as well, because they were like, you need to stop coming to the ER, and I’m like you don’t understand here. Um, and so they have social workers to help with this stuff. I didn’t even know this. Why don’t you can set up an appointment with a social worker and then they will get you the appointment that you need. And they have like pull because their social. You know what I mean? Right? And so the social worker got me the appointment. The surgeon was amazing. She was like we need to while you’re under I’m going to give you a marina IUD. I always hated birth control. Because what do you have to do with birth control? You have to take her the same freakin time every day. Yeah, right. Yeah, it’s Give me a break. Um, so like, what is time and when, like, I take the pill when I take the pill. Um, so so she was like, I’m gonna give you an IUD a marina IUD while you’re under and you know, because you’re really anemic. And we need to, like, fix that. So this like, kind of like, stopped your period for a while. And I was like, Okay, that sounds amazing. Because also having a period as a lady with ADHD is always like, Oh, I have to do what now like, Oh, I’m leaking again.

Sarah 29:02
Right. And the executive function of managing Yeah,

Jenn 29:07
there’s logistics involved there. Much. Yeah, I need to have pads at home and tampons at home and like, in my bag, and then whatever. It’s like, there was like one point as like an adult where I’m just like walking around with a backpack full of like, feminine products, because I’m like, I don’t know what I need them. I don’t know how much on the either. Yeah. Just have them on me at all times. But I’m the poo. Oh, so the IUD. I was like, Yes. Sign me up. I never wanted to get one though. I’ve always heard the insertions are horrible. So I was always like, I can’t go through that. Um, and so she was like, Well, I can do it when you’re under anesthesia. I was like,

Sarah 29:50
That’s amazing.

“Just Be Yourself”

Jenn 29:52
Oh my god. So she did it was under anesthesia. And then like two weeks later, my body tried to expel it and I ended up in the ER again because like it was Awful. And I had to get it removed and reinserted, so we had to like schedule that. And I said to her, I was like, I cannot be awake for this, like I do have if it’s okay to like, have a warning here. I’m like, Yeah, I have like PTSD from like sexual assault and sexual trauma. And I’m like, if I go through that pain, I’m like, never gonna have a sex life again, it’s never gonna happen. Like, that’s like the blackout that entire portion of my body and pretend it doesn’t exist. Yeah, so, um, so she actually worked with me and got my insurance to cover for me to go under sedation, to have it reinserted. And I was like, This is amazing. And it’s again, it all comes back to this whole thing of just like knowing, like, being really open about, like, the stuff that you are dealing with, and like, letting people help you. That’s one of my things with ADHD that I’m really bad at is remembering that other people can help me, um, because in my head, it’s like, this needs to be done. It needs to be done now. And I need to do it all myself, instead of being like, Oh, this needs to be done. Who can I talk to about it? You know? Right? Absolutely. Yeah. So um, so having her do that was like, amazing. And I came out of Anisha singing a song. That’s beautiful. Oh, yeah, I was singing it. But the Marines in you take them. And the nurses were like, I couldn’t stop singing. It was like, I couldn’t stop.

Sarah 31:43
That’s amazing.

Jenn 31:45
So you know, you just be yourself.  that’s my thing. Yeah, I love that so much.

Sarah: And I think I mean, there’s gonna be just so much value for those who are listening right now. I mean, even myself, I’m just like, holy crap. Like, just so many, I guess it’s a fundamental thing is just having your body taken care of and not being able to do the things that you need to do to just function. It’s just so debilitating. So thank you so much for sharing with us. Like, I don’t after all this, this is like, oh my god. Of course, this is like gold. You know? What said I didn’t go through it all not to be able to be of service with it in some way. That’s my sort of life motto with stuff. It’s like, it’s gonna be crappy, but then we can help people.

Sarah 32:36
So absolutely. And to that point, I want you to tell everyone where they can keep listening to you and tell us about your podcasts and where people can find you.

Jenn 32:47
On the inside. They can. Okay, you can keep listening to me on my podcast lady HD, a podcast for distractible women. It’s lady Ah, so it’s like la DY, HD all one word. And that you can follow the podcast on social media. Well, you can subscribe to it everywhere. But then you can follow it on social media at lady HD pod on Twitter, and Instagram and Tiktok. And you can also follow me john Welch on Twitter, Instagram, tik tok at Jen Welch. Now it’s Jen with two ends, W el ch and now, like right now.

Sarah
Awesome. Thank you so much, Jen.



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