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

🔊 Audio Recording

Jen Welsh shares her journey of navigating ADHD and health challenges with humor and empowerment in this podcast episode. Through her experiences, she offers insights on overcoming obstacles, medical advocacy, and turning challenges into opportunities to help others.

Highlights:

• Jen discusses her diagnosis of ADHD at 28 and the realization that working independently wasn't a solution to her productivity issues.

• The episode humorously explores Jen's health challenges, including dermoid cysts and persistent concussion syndrome, highlighting the loss of coping skills and executive functioning.

• Practical strategies for medical advocacy, especially for women and women of color, are shared, including the importance of arriving at medical appointments prepared with a script.

Summary

In this episode, Jen Welsh, host of the Lady HD podcast, shares her personal journey of living with ADHD and navigating complex health challenges. Diagnosed with ADHD at 28, Jen humorously reflects on her initial belief that working independently would solve her productivity issues, only to discover that the challenges persisted. Through candid conversations, Jen highlights the importance of setting realistic expectations and celebrating small victories, providing relatable insights for adults managing ADHD in their daily lives.

Jen's journey is further complicated by her health challenges, including dermoid cysts and persistent concussion syndrome. She humorously likens the cysts to ovaries trying to make babies without directions, shedding light on the loss of coping skills and executive functioning following a head injury. The episode provides a warm and honest portrayal of living with overlapping health conditions while maintaining a sense of humor, emphasizing the uphill task of relearning life skills and navigating the healthcare system.

Empowerment and self-advocacy are central themes in the episode, particularly in medical settings for women and women of color. Jen shares her strategy of arriving at medical appointments with a prepared script, ensuring effective communication with healthcare providers. The episode highlights the often-overlooked resources available, such as hospital social workers, and encourages listeners to transform healthcare experiences into opportunities for empowerment and advocacy.

Transcript

00:00 - Sarah (Host)

For many years now I know that if I pop Brain FM into my ears I'm going to get something done. That's because their music, optimized for focus, is just amazing. Now they have music for sleep and meditation and even relaxation, so that you can get into whatever mental state you need to get through your day and get things done. To give this a shot, go to adultingwithadhdcom slash brainfm for a three-day free trial. 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, Jen, How's it going?

00:46 - Jenn (Host)

Hello, how are you doing? What a morning. I'm just very excited to be here and to be on Zoom on time and I got a shower in 10 minutes ago and everything's great, we're doing great, so happy to be here?

01:03 - Sarah (Host)

Yeah, I am. I am freshly out of the bathtub as well. I just had my bath, I think we both were so like focused on getting here on time, and I think we both could have used more time, but we're here now.

01:16 - Jenn (Host)

I know, I know, especially since I think we have a big chunk of time blocked off and we're both like we're only going to take the smallest amount and then like, yeah, it's fine, everything's great. Look at us go.

01:27 - Sarah (Host)

I know, go us. I mean just the fact. 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 accomplishment, oh my.

01:37 - Jenn (Host)

God, it's amazing, it's. I have had to learn how, to, you know, set real those realistic expectations for myself and also accept that they change on a day-to-day basis, like on. Like today it's like I'm in my seat at 1 PM looking somewhat presentable for a video podcast recording Right, and like yesterday it's like I stood up, you know, like that was like my baseline yesterday. So it's like every day it changes and then you know, but then other days my baseline yesterday. So it's 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 there, yep.

02:14 - Sarah (Host)

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, I totally feel you, you know, and I yeah.

02:32 - Jenn (Host)

I've been a grownup with roommates for years now, um, and I'm actually in my first studio apartment and but being a grownup with roommates, you start doing that right. Like I'm like the kitchen is like a block away. 'm just gonna like stop drinking cold soda and just have warm cans, and I'm going to so I can 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 shelves 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. And 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, right, it's a functional thing, right, and the fridge is right there now. So, uh, 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 and it's like no reason, no reason to have warm soda anymore. So I love it.

03:37 - Sarah (Host)

Yeah, I love it when you find little 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 that come about?

03:51 - Jenn (Host)

I was diagnosed when I was 28. It came about after years and years and years of struggling. I was very much like my psychiatrist who diagnosed me was like, oh, you're a textbook lady with woman with ADHD case. You know, I was just very daydreamy 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 the computer stopped working. Things fell apart, right Like the computer stopped working and uh, and then I got.

04:27

I just was like, well, that was just me going through my college years, you know whatever, Right, and then I got into the. Then I got into the workforce and it 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, um, you know however many years I was working in the film industry and 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 as like an independent contractor, as like an independent contractor, self-employed, doing a very like isolated by myself sort of deal situation, Um, and I was like this is going to be great Cause now I don't have to worry about anybody else and I'll get all my work done and I won't have any of those distractions. And then no work got done.

05:19

And I was like crap. It's me Like I'm the problem. Um, yeah, and I remembered.

05:29 - Sarah (Host)

It's an interesting way of finding out. I haven't heard that one yet, but that would be a humongous red flag, yeah yeah, yeah, it's like even with nobody around the works not getting like.

05:41 - Jenn (Host)

I have nobody to blame. And um, I I remember, like from the time I was around like 15 or so, um, I think that's when so that was like 1995.

05:52

That's when, like um, adhd 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 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, and being like, uh, 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, everybody's like that. No-transcript. That was a really long answer, I'm sorry. 28 is when I was diagnosed.

07:11 - Sarah (Host)

Oh, no, no, no, no. There are no sorries on this podcast. We ramble, we interrupt, we we have.

07:18 - Jenn (Host)

ADHD. Good, I try to be the same way on my podcast, but I know that we have a topic and we have, and I'm watching the time. But also I forgot that I started recording like five minutes before we started talking. So we're fine.

07:30 - Sarah (Host)

Oh yeah.

07:31 - Jenn (Host)

Fine.

07:32 - Sarah (Host)

All right, good call. Looking at the time, I totally was having so much fun I I didn't even think about that, but yeah, so yeah, as a as a segue to the topic, we were going to talk about hormones and dermoid cysts and all kinds of fun stuff. I just I have one. I have not a dermoid one, but I have a cyst too. I just got I should name it, but I haven't, you should.

07:56 - Jenn (Host)

Your ovaries worked hard to make that. That's what. That's what I feel like with mine. I'm like my ovaries really took it upon themselves to try to build something. You know it didn't come out right, but they tried, tried oh god bless our ovaries oh, so I I have.

08:15

I actually had a, a joke 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 hack. But um, but I did um, it's like, let me run my set, but they uh, so I, yeah, I grew these um on both ovaries. It ended up that I had um two dermoid cysts that are like.

08:38

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 lots of hair and teeth and sometimes there's like adrenal glands or like brain cells or things like that will really disrupt your system and um and like bone and stuff like that in there. Um, and it's just this little like so it was basically on each ovary. I had like this. They said it was like the size of a baby head on each ovary oh geez oh honey.

09:13

So my joke? My joke was that, like you know those, like okay, so you know, like in elementary school where they'd have you, they 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 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 a line. Number three is like ba ba, ba, like whatever. And then the very last one is like ignore instructions to through whatever, right, so you were really supposed to do nothing. 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 ovaries were like we're gonna make a baby. Yes, here's some fat, like whatever. Like that's what I feel like happened. They're like we know that this belongs here and we know that that belongs here, and like it's like when I cook. You know, I nailed it. Yeah, exactly, we did it. Here we are it's like an 80.

10:14

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.

10:20 - Sarah (Host)

Right, don't tell me how to make this, yeah.

10:26 - Jenn (Host)

Oh wow, oh yeah.

10:28 - Sarah (Host)

So how it?

10:29 - Jenn (Host)

happened.

10:30 - Sarah (Host)

Wow, how long ago was that.

10:32 - Jenn (Host)

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, in January of well, okay, yeah, so in January of 2018, I slipped in the shower and hit my head and I ended up with persistent concussion syndrome, where it just like I had had concussions earlier, as like a cat, like cheerleader growing up and stuff like that got dropped on my head a lot. But, um, yeah, 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.

11:27

I would like that's how like low function ground zero yeah.

11:33

Yeah, it was like, and now we're chewing, um, and like I couldn't really talk and I 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, 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 um, uh, what had been through?

12:39

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 need to have people lined up to walk my dog. You know, like it didn't even that stuff, didn't even like. Because that stuff I struggle with feeding myself. Remember to feed myself every single freaking day. You know, like it didn't even that stuff didn't even like because that stuff I struggle with feeding myself.

13:21

Remember to feed myself every single freaking day you know, and when I'm 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 have a little bit more forethought or like planning. So that was like that was like a big thing and then after that it sort of like I ended up with complications.

13:51

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.

14:02

The second surgery the surgeon was like I opened you up and you were just full of hair and I was like, 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.

14:21

That like rejection, sensitivity, dysphoria, sort of feeling that overwhelmed, like oh, it's never gonna happen, like whatever sort of you know feeling and you know like having to navigate all of the insurance stuff, having to you know this and that, and like you know I'm just like a person who's 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. Right, yeah, and so that was like a lot, because it was it was basically nine months of 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, 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 going through all of this.

15:30 - Sarah (Host)

Yeah.

15:31 - Jenn (Host)

And I almost feel like you know again, it's like as always with ADHD. It's kind of like that, like um, kryptonite and superpower at the same time, where it's like, yes, I have all these executive functioning issues and whatever, but I also have my hyper focus and right now I'm hyper focused on figuring out what the f is going on in my abdomen. And so when I am talking to the doctors, I I'm able to say, I'm able to point out things or say to them like dermoids just 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 little baby teeth in your belly, right, who knows?

16:16 - Sarah (Host)

Right.

16:17 - Jenn (Host)

If it's not causing problems, you don't know Exactly 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 even if they didn't regrow, there's something that somebody didn't get'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. That was like the emergency surgery was like getting rid of that.

17:15 - Sarah (Host)

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17:47 - Jenn (Host)

Having the hyper-focus 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 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 are certain things that I would say to my doctors.

18:30

Every time I had to cause, 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 anemic and it was like it was a mess and I, I had a spiel 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 I've been sober for like five and a half years.

19:02

I uh I thank you, thank you, oh uh, self-medication for PTSD or for ADHD and.

19:10

PTSD, uh, is a 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 why 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 or hope that they like whatever, and it's just like like, and then I present and focus 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.

19:48

I'm supposed to be on a podcast now, but I was just thinking about how I have, uh, 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 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 stove that needs to go in the fridge, right, and it's like you need to just put the freaking 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.

20:11 - Sarah (Host)

I was about to offer like do you need to step away a minute? But I totally no-transcript the way.

20:48 - Jenn (Host)

And it's so funny, like by like my like eighth ER visit, I started like getting the same doctors right and the same shift, yeah, and they'd come in and I'd be like, hey, I just have FYI, I'm in recovery, I'm like whatever. And the the one, like this one doctor was like I remember you, you have PTSD and you had surgeries already. And I was like, yes, and she was like so excited that like, apparently a lot of people don't do that, you know, don't like say that stuff like right up front, and it really was helpful like to sort of like get in 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. So, yeah, and anyways.

21:43 - Sarah (Host)

Oh no, I am so happy we went down this road because I mean, 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 I've had so many times where I've forgotten something and I've tried to call or message a doctor and they, they and getting dismissed because you know you already had your 15 minutes in the room, you know, whatever. So I love this idea of just having it all together before you even walk in Cause yeah, it really.

22:30 - Jenn (Host)

it really made a difference, especially like, yeah, dealing with the surgeries and all of that stuff and um and even yeah, and the medicines and like, um, I ended up, uh, one of the things I'm really proud of is, um, so the third surgery, um the surgeon I had for that one. She was amazing, I love her so much. And she, um I was only able to get an appointment with her. I was having a nightmare situation. I kept running up against like nobody has availability, nobody takes my insurance, blah, blah, blah. And then, um, the doctor's 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?

23:15 - Sarah (Host)

What is that?

23:17 - Jenn (Host)

Tell me, cause, that's my reaction what are you talking about? They had a social worker on staff. I went and met with her. She called the this surgeon's office, got me an appointment the next day for a consult 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 um the hospital. This was through. So I'm in New York City, so this was through NYU and it was through the network of um. 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, I don't want to be here they have social workers to help with this stuff.

24:01

I didn't even know this. Wow, and it's like 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 they're social. You know what I mean.

24:12 - Sarah (Host)

Right, whatever yes.

24:14 - Jenn (Host)

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 Mirena IUD. I've always hated birth control, because what do you have to do with birth control? You have to take it at the same freaking time, every day.

24:30

Right, yeah, it's give me a break. It's like what is time and when, like I take the pill when I take the pill. So she was like I'm going to give you an IUD, a Mirena IUD while you're under and you know cause you're really anemic and we need to like fix that. So this will like kind of like stop 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 I have to do what now, like oh, I'm leaking again.

24:58 - Sarah (Host)

Oh, crap Right and the executive function of managing that. There's logistics involved there.

25:09 - Jenn (Host)

I need to have pads at home and tampons at home and like, and in my bag and then whatever. And 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 when I need them.

25:23

I don't know how much I'll need, so just have them on me at all times. But oh so the IUD. I was like, yes, sign me up, but 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. And so she was like well, I can do it when you're under anesthesia. I was like that's amazing.

25:47

Oh my God. So she did it while I was under anesthesia and then, like two weeks later, my body tried to expel it and I ended up in the ER again with, 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, of course a warning here.

26:09 - Sarah (Host)

Yeah, I have like.

26:11 - Jenn (Host)

PTSD from like sexual assault and sexual trauma. And I'm like if I go through that pain, I'm like never going to have a sex life again. It's never going to happen.

26:19

Like we're just like going to block out that entire portion of my body and pretend it doesn't exist, so, um, so she actually worked with me and got my insurance to cover for me to go under sedation to have it, uh, reinserted, and I was like this is amazing, 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, 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 Anastasia singing a song.

27:21 - Sarah (Host)

That's beautiful.

27:22 - Jenn (Host)

Oh yeah, I was singing. You put the moraine in, you take the moraine out, and the nurses were like I couldn't stop singing it. It was like I couldn't stop.

27:36 - Sarah (Host)

That's amazing.

27:39 - Jenn (Host)

So you know, you just be yourself.

27:43 - Sarah (Host)

Be, yourself.

27:45 - Jenn (Host)

That's my thing, yeah.

27:47 - Sarah (Host)

I love that so much and I think I mean there's going to be just so much value for those who are listening right now. I mean, even myself, I'm just like holy crap, so many. I guess such 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 is just so debilitating. So thank you so much for sharing with us like how to navigate all this.

28:13 - Jenn (Host)

This is like, oh my God, of course, this is like gold you know, listen, 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 going to be crappy, but then we can help people.

28:28 - Sarah (Host)

So absolutely, and to that point, I want you to tell everyone where they can keep listening to you and tell us about your podcast and where people can find you on the internet. They can.

28:40 - Jenn (Host)

Okay, you can keep listening to me on my podcast, lady HD, a podcast for distractible women. It's Lady H, so it's like L-A-D-Y-H-D, all one word. You can follow the podcast on social media. Well, you can subscribe to it everywhere, but then you can follow it on social media. Uh, well, you can subscribe to it everywhere, but then you can follow it on social media at ladyhdpod, on twitter and instagram and tiktok, and you can also follow me, jen welch, on twitter, instagram, tiktok, at uh, jen welch. Now it's jen, with two n's w-e-l-c-h. And now, like right now, awesome.

29:15 - Sarah (Host)

Thank you so much. To support the adulting with adhd podcast and to access its earlier episodes, be sure to visit patreoncom slash. Adulting with adhd.