Igniting Conversations that Bring ADHD Women Together: ADHD Trailblazers at the ADDA Women's Town Hall July 2022 Part 1 #153
What do women with ADHD need right now? Well, a lot of things, and community is high on the list. This episode amplifies and celebrates the trailblazing voices and experiences of women and female BIPOC individuals within our ADHD family.
In July, ADDA hosted the International Global Gathering conference to spark conversations on how to thrive with ADHD. If you're not familiar with the non-profit ADDA, check out their membership - they have had solid resources, events, and support groups for adults with ADHD for over 30 years.
One of the events I was honored to moderate during the virtual conference was the Women’s Town Hall. The ladies had a lot to say, so I broke it into 2 episodes:
The first part of the event features ADHD Women Trailblazers with guests Laurie Dupar, Liz Lewis, Terry Matlen, and Linda Roggli, hosted by ADDA Board Member, Michelle Price.
The second part of the event features ADHD Women Trailblazers in the BIPOC community, led by Inger Shaye Colzie, with guests Sudhita Kasturi, Victoria Novaro, and Stacey Machelle.
It’s time for us to band together in conversation to change the paradigm of ADHD in women.
Want to join me in person to talk about your ADHD? Our ADHD Mom Retreat is October 7-9 and you’re invited. Reserve your ticket here.
Patricia Sung 00:02
Are you overwhelmed by motherhood and barely keeping your head above water? Are you confused and frustrated by how all the other moms make it look so easy. You can figure out how to manage the chaos in your mind, your home, or your family. I get your mama, parenting with ADHD is hard. Here is your permission slip to let go of the Pinterest worthy visions of organization and structure fit for everyone else. Let's do life like our brains do life creatively, lovingly and with all our might. When we embrace who we are and how our brains work, we can figure out how to live our lives successfully, and in turn, lead our families well, at the end of the day, we just want to be good moms. but spoiler alert, you are already a great mom. ADHD does not mean you're doomed to be a hot mess mama, you can rewrite your story from shame spiral success story, and I'll be right here beside you to cheer you on. Welcome to motherhood in ADHD.
Patricia Sung 01:08
Hey there successful mama. Have you ever witnessed something really beautiful and totally missed how special it was in that moment. And it wasn't until it was over that you realize just how special that moment was? Well, these two episodes are about a year. Or just that. Back in July, I volunteered with adda which is the nonprofit that helps adults with ADHD thrive. And they hosted Agha, a global gathering for a new way, an innovative way of doing an international conference to learn about your ADHD. Now, if you're not familiar with adda, go check them out. They have really solid resources and support groups for a membership that's totally affordable. It's not even 10 bucks a month, head over to add dot O R G and check them out. During this conference. One of the events was a woman's Town Hall, and a couple 100 women showed up. Board Member Michelle price first hosted four of the original woman who set out to start the conversations about women with ADHD. Back in the day. This event was followed by a second conversation of Trailblazers women in the bipoc community who are stepping up and sharing their story of having ADHD especially as a woman of color. Now, at the time of the event, I was actually moderating the questions which was totally overwhelming to be totally honest. And it wasn't until we were well into the events like a solid hour, hour and a half before I realized what I was witnessing before me the honesty and the brokenness, the hope and the healing, the persistence and the courage, seeing women in community. It is my honor to share with you these conversations honoring the women who have come before us and the women who are stepping up now to spearhead change in the ADHD community in how ADHD is perceived in the world around us and how it's talked about, especially in communities of color where it's particularly not safe to talk about your weaknesses. Now because this was a very long event, I'm breaking it up into two parts. In the first section, you'll have guests Laurie Jabbar, Liz Lewis, Terry Matlin and Linda Radley. And in the second part, we have guests Inger shake, Halsey, Sue de tech history, and Victoria Navarro. You will also hear from the audience as this was an interactive event. Now, fair warning, we were using a brand new technology. So you will hear us learning throughout this event. And I'm always proud of us ADHD years for being willing to tackle new, innovative things. If you are here for these kinds of conversations, the openness and the sharing with a group of women who have brains who work like yours, you are my kind of people, you deserve to have a safe space to talk with women whose brains work like yours and grow those relationships. You deserve a space to be yourself, you deserve a space for rest, and relaxing and taking care of you. And you also deserve some good food and a hotel remodel yourself. So that sounds like you're kind of deal. You are invited to join our ADHD moms luxury retreat that I am hosting here in Houston, Texas. It is an all inclusive event. So once you get your ticket, you just show up and I take care of everything for you. I take care of the planning, taking care of the meals, the hotel, you get to turn off the mental load and just enjoy the freedom of being there and taking care of only yourself most of the decisions I'm going to take care of for you. So you simply get to enjoy and we're going to sit together and have these kinds of conversations in person. And while there's definitely not going to be several 100 women there. It's a small group of women. I want to sit with you and spend quality time getting to know you answering your questions about ADHD, for you to know that you're not weird because of this weird, quirky thing you do that the rest of us in this community do a lot of those things too. And knowing that you're not alone is one of the best gifts that you can give yourself, along with taking care of you. So put yourself on the priority list and come on to Houston, October 7 through ninth, you can reserve your ticket at Patricia sung.com forward slash ADHD hyphen, Mom hyphen retreat. So I'll see you in Houston next month to hold conversations in person just like these. So join me now is you come behind the scenes into this event that was so beautifully hosted by adda and here what are the women in our community talking about right now? What's on their hearts? What are they struggling with? Let's hear from this growing community in the ADHD world of women who are world changers. Welcome to as women's townhall during the global gathering event in July 2020.
06:13
So we're here to celebrate, we're gonna celebrate today. They celebration to everybody. We're going to celebrate our ADHD. They've been doing this for 30 years can even get ADHD. They've been doing this. We're here to get a pulse on the state of women and ADHD. Why? Because the current treatment is based on little boy. There's not a lot of research, you know, what is it? What's it all about? And so when I went looking, I've been looking for a while I discovered I had ADHD in the morning. I think it was 42 years old. My first client told me I had ADHD. That's how I find out. When he said it. I thought to myself, What did I do that made him think that I had ADHD? All right. I don't know what that was. His name is John s era. He was my first play. Some of you might remember we use a program called neurogenesis. And so after I've been working with him on this, I got another way for him. To do this. I can't do it. I said Sure I'll do it was the name of the book, Healing anxiety, depression by this guy named Dr. Daniel. And I realized, okay, somebody's trying to tell me something. Because then I realized, I went to his site. And I took the test. And I realized, Oh, my God, yes, I may have this thing. And so that began my journey. And so I wound up added my granddaughter, she got a scholarship from Abilene greens, another Trailblazer. And so I got involved that way. And so I want to say that, hey, you know, we're smarter, we can figure this out, we're gonna have to do this ourselves. And the next thing I do is this state of women in ADHD townhall because that's what we do. We got to just take control, and we start to do things. And so it's not the last of the of these events, we're going to do a series of these town halls to stay connected and to get us all connected in a community. So stay tuned for that. And I want to read something that came from Linda Riley today, because we were talking about the town hall that we're going to do and how much we have done over the last, I don't know, 30 years. It's a long time. I mean, some of us are not even 30 I know I'm not 30.
08:37
Anyway, we just was never the questions, and she absolutely responded and I loved her response. And I'm gonna read a little bit of it. It says yes, it's a great time to share the progress we have. But we will all say exactly the same thing. That saris book open the door that women are still under diagnosed, especially those with inattentive ADHD, that there is a difference between the way ADHD manifests between men, boys and girls or women, more those with estrogen fluctuations that more research is needed, especially around the woman's in ADHD, that women tend to internalize ADHD missteps, ADHD missteps, which leads to a higher rate of self harm and suicidal ideation. The answers are pretty well established. And what's missing research. There's inherent bias in research towards males, even in animal studies that carry ADHD, or multi gender fluidity diagnoses like fibromyalgia, chronic fatigue syndrome, polycystic ovary syndrome or barely in the literature. And she says I think what women want to hear are specific. So we decided to go ahead and let you pass away. And so the way that we're going to operate this is that you're going to walk to the podium there's a podium over where you can see it. I don't know where he is going to ask your question on the floor. If you want to ask a question, you sunlight over there, and you go ahead and just ask your question. Okay. And then I want you to know that we're creating a safe space here. So we're just going to open it up for a pillar one who got two panels. One panel is like the OG ADHD trailblazers, they've Oh, geez. Right. They've been around 30 years. And then we've got the bipod panel, which is they have maybe been added for 30 years, but they are trailblazing in the people of color space black indigenous people of color space because it's really important that we enter us, I guess is what I'll say. So on panel one tonight, it's going to start in two minutes, with Terry Ballard, Linda rodeway Matlin is correction, Linda Robley. She's add deconversion as all the whole losers. We got Laurie DuBois. She runs the coaching center. We've got Liz Lewis, who works with healthy, healthy ADHD. And Michelle Frank couldn't make it. She sends her readings. She's on vacation. And Evelyn green, she's an oh, she's no Gigi bridges, the bipoc. And then I will give a shout out to my biplot trailblazers and that panel was started after this one. Let's English shekels. That's the Dina Kessler, Laurie and Victoria Navarro. So I would love to kick this off with this lady the pounds let's say something, or do we have any of you have a question for podium is right over there and just step up and ask your question.
11:46
Michelle, I think you're gonna read all have it today, because that's not all the research that's missing. There's a lot more. I was just doing that to send you an email. But it is true because there are so many women in ADHD hit this up until 1990 177. Yes, 95. That's exactly right, which is about the time that men have a Wells book came out during the destruction when finally realized adults could have this as well. But I do want to give us some acknowledgement of the fact that we have come so far, and especially a shout out to Dr. Steve Hinshaw, who has done the only longitudinal study on girls with ADHD. He started with them when they were just in primary school, and now they're in their late 20s. And he's the one that did the research that shows that there's much, much higher percentage of girls, girls and women with ADHD, do self harm, like cutting and burning, and also suicide is also higher in our population. But the good news is that we do have this, you know, we bought to create this. And there are the Palooza and there are all kinds of programs that she does, there are things out there. So there is more support than they used to be. Because when I was diagnosed in 97, it was like, I wanted to talk to somebody else about ADHD and there was no one to talk to. At least I thought there was, but chances are good. I knew a lot of people with ADHD, they just didn't know what to do. I just wanted to put this out there because there's so much to say, but I just want to start us off.
13:28
Okay. I see Theresa is at the podium, everybody. Hey, I think Linda started going into part of what I was going to ask. I live in a city, small city. I live in a city where there are two universities, as well as a biomedical Resource Center andmedical industry. And so I guess my follow up to that is what you mentioned was what do we need to do to ask for right? And to get more research going? To be a great question for you.
14:08
And I don't have a really good answer because you know that research requires money. And in order to get money we've got to have I think there are people out there who are interested. I don't know if a lot of you know about Dr. Sandra ambulance, which she published this year, the first ever study, but she she calls it mood cycles, which is about our monthly cycles and how our moods go up and down and how estrogen affects it, et cetera, et cetera. But what we've done for a long time, like Dr. Patricia Gwen is not required, retire, bless her heart, hold information from information about regular women, regular meeting not ADHD, when that could be the issue and from that and from her own expertise and from her political experience and pushed it together to make some research. But what I really want and I know that we have people out there that are excited to do this, is I want specific to research, let's take estrogen levels and see what kind of mood goes with that. Just so you know, when I was going to say about Dr. Sandra, is that when I met her a few years ago, because I told her that my program was at diva, and she said, Oh my gosh, that's what we call her. Our people are women in the Netherlands, which had nothing to do with just initially, I was like, what am I trying to say an acronym for? What they do. But she actually was inviting me to help her do crowdsource funding. That's how she was going to get it. And she needed hundreds of 1000s of dollars do the study, she couldn't get the government to pay for it. I'm not sure how she got this particular study funded. But I just need to say that we need a lot of money. And in order to get a lot of money, where do we where do we generally get that universities, unfortunately, pharmaceutical companies, and that skews those results, in my opinion. So we need to research foundations with pure resources that are specially devoted to issues and non binary. So that's the answer. And I wish I had a better one, but maybe we are NIH, yes. And MIT and I invade mental health and mental health inthe United States to get money or a taco.
16:26
Never Never was was. So I agree with you that historically, women have been on certainly the low on the totem pole with any kind of research. I mean, we look at cancer, we look at heart disease, all of that when we're studied later on. I'm kind of one and again, maybe it's my Pollyanna nature. That is research is always behind what we know. And eventually, I'm wondering if there's a way to, I don't necessarily invite people to track sometimes your menstrual cycles to track there are tools that track all that data down, it's sort of like, I know you're going through the side door to get once you have that data down, someone's gonna go, Oh, my goodness, I had no idea. I want to pick that up. Are you ready? Are you ready to do this? I know that happens, and it may be putting the cart before the horse that gets us going. I would love to see research beyond just with ADHD, also tracking but also tracking girls in their menses. I mean, we know that the reason that women have challenges with the next date is because of that change in estrogen that happens every month for people. That's sort of to me like why are we not looking at that, and it is not that hard 30% of the population to have someone be willing to track their mood, their memory, their ability to concentrate, and start getting some data don't depend on the researchers who we know we're not going to change. This is what we're finding. What do you want to know? By nature, it's not to say that needs to happen.
18:34
I will tell you that I have done a survey more than 2500 Women have taken women have taken the survey of women's authority and better and I asked 125 questions, and they were very personal questions. Have you had any miscarriages? Did you have unplanned pregnancies? When did you start having your periods went on and on and on? But the problem is, is that this is anecdotal. So I think it published anyway, part of the questions is amazing. And we did that. And I think to recall vaguely how you did that I no longer doing that. It takes a lot of commitment. I'm thinking specifically around ADHD questions and some of the mood and memory and confusion that go along with that. And I'm not sure if what you approached or how you went about that. I just know. And by the way, we have people in our own ADHD community that do research are busy supporting our profession as why doing research. So we actually have people that we can tap into, to help sort of move this along. It's not my bandwidth, but I certainly can create some social flyer that says, Tell me about this. Tell me about that or tracking G for people who track themselves. And I'm really talking about from early on Yeah, this is anybody else I'm just picking him up.
20:13
But I do have a blazer on. So maybe the other way that you can do this is to get students interested. You know, it's like, if you don't have the money, then what you need is women power, women hours. What I will do, I'm, I'm a research professor, too. So I think if you get students emotionally committed, and whenever you speak about ADHD, the consequences we face if we do not treat it, if we don't educate or whatever, people are just astounded, and they want to help. So if you teach them that they can help doing research, reading about this, it's like, just get them as motion to start doing the research, even without money. Not everything is about money, you can do really good stuff. Without the money, and most probably the first thing that came out on ADHD, they were not sponsored or supported by what that was why there was. So I think that will be something we should be looking at just targeting universities all over the world, and saying, You know what, start researching this because this is going to be the next big thing. And you don't want to miss it. Because is the next big thing. So that's a you know that you know, what the answer to the problem is in the room always, always is a research professor in our bids, and she's one of our trailblazers. It doesn't get any better than that. Dana, you have a question?
22:13
I don't know all of you. But I was diagnosed a year and a half ago. And I began looking at what is out there this evening, about myself, and so on resources, podcast, websites, appreciated access to counsel, thank you. for that. One of the frustrations that I have, as I tried to get sort of the latest and greatest is that as a 16 year old, I'm not retired, I only have children. And I identify as lesbian woman, and everything. With the exclusion of one exception of one or two books, I wanted to be on relationships, I think they need to progress and has one book about us. That is men and women, but it moves it around in terms of the examples of gay couples, lesbian couples, etcetera. So I don't see myself reflected in any of their research. And, of course, I'm already from the statistical population of people who I have a lot from you folks come before me to learn. Yes, it's not just boys basketball. But it's bigger puzzle. So for my own personal learning, less interested in what happens with my cycles. But I don't see a lot it's very petrol sexist. Use that language. All the examples are for husbands and even when you look at what happens in traditional domestic division of labor, it's very much follows that and so I'm not criticizing the work that's been done. But you know, what? Am I dreaming since I think that I might see myself in publications that are worse now. What can you folks, better writers and researchers and what can I do? I'd love to be a sample in a study but I don't know how you go. Anyway, so that's my dementia, and postmenopausal I don't have kids and a husband. Yeah. So I guess that's it. I have certain children. So thank you for using binary. Beyond just not binary, it's heterosexual options. At large discount, so it's not.
24:41
It's fascinating. All generations are represented here. We've got boomers, we've got Gen X, we've got X ENEOS. We've got millennials. We got Gen Zers. I think that we can figure this talk we'll just move away from research and talk about dirt of support among the professional community because I've heard too many women who say that they go to a doctor, they've been diagnosed with depression. They go to a doctor, and one of them says, Oh, you have ADHD and they go to a different normal, perhaps they move. And the next one says we've done or ADHD is missed, so on and so I'd love to have a conversation about not just
25:22
Terry, I think that I have a lot of emails with you doing most of the panel. And that's probably the number one question I get is I can't find a clinician who understands ADHD and misdiagnosed, or the cancer depression, but not the ADHD, maybe I have both when we do when we do. And even a lot of professionals who do this as a group now, I think that we need to educate professionals, those who know about ADHD, but are so clueless and those who know nothing about ADHD and are totally clueless. This is like the number one question I get an email almost every day. And in the presentations that I do, what can we do? Here we are 120 Salon people? And yes, research is extremely important. I totally agree that these are the foods that I'm hearing on a daily basis, why not to get a diagnosis, or diagnosis and treatment? Is depression Oh, you can't get your laundry done. You can't do this, you can't do that. Well, obviously, you're depressed, and they listen to you.
26:28
So one of the things that I have started doing is reaching out to medical practices and offering to educate them about ADHD, because therapists are not, not all therapists are ADHD informed. And so that has helped them to see that this is a bigger issue than children, even when they're working with adults is for them to understand that this is their and how it affects women is different than how it affects men. And that has been very well appreciated. This is my local community that I am doing it in has been easier to get into practices when I knew somebody or we had gone to versus cold calling a practice. But I wonder if it will be helpful for all of us in our local areas to start reaching out. If we can do this, we explain to them how ADHD affects and how it is. And all the other issues that may come with that. Yeah, I think we get it's real clear. And the timing is good. Clearly what we're doing, I think we we probably need to have another like meeting separate from this some type of ADHD women's collective or something where we can talk about this and like really get a plan together. You know, it seems like it makes sense.
27:51
So Margo, yes, yeah. Hi, Floyd Park, and someone who's had a psychiatric mental health nurse practitioner. So I've heard both of my feet on both sides of the fence. With regards to what is taught what isn't taught in medical community, I'm just saying we are beating our head against a wall to try and change the system. It's not going to happen. It just isn't. It's not going to happen quick enough. When you put it that way. When I realized that it's approved after doing this, you've been doing it three years in the shop and doing it it's funny is that again, it was Terry, that was saying we're getting these motions of people that are having difficulty finding practitioners to be able to diagnose and diagnostician prescribers to be able to prescribe. The fact is, very little education is done in the medical community. And the people that are really good at it is because they're taking a personal interest in it. I truly believe that part of what we can do. And again, it's not waiting to change somebody else that's almost impossible, is to what can we do to help educate other women? I teach a class on medication. And the reason I do that is because, again, when I have that information, they're not getting it. People are not getting that information anywhere. I mean, given up trying to change the medical community. I'm thrilled what I have someone that cares, interesting. So I would encourage people to think about if there's something that you're frustrated about not getting or people asking you and then not knowing what is it that he put together, they have shares with them about what the next step is. And I'm truly convinced that if you're not getting what you need from one of the, from one prescribers or diagnosticians that you're looking at, go to the next one. Yeah, they can help you or them for you to hang around. And they're not interested in
29:51
Hey, Laurie, what is the symptom of not like? One of the things that we have a hard time doing sometimes is pushing like medical professionals. I worked in healthcare for 8090 years academic medicine and teaching hospital and people would be pissed at that. I mean, they will be so upset that waiting so long for the doctor. They're harassing me. They're harassing staff, and they get in with the doctor. And it's Hi, doctor, and there's, they don't work we don't watch. So maybe we should learn. You know, I'm just I could see that a lot of stuff.
30:20
I've been known to walk out of it honestly, you know what, my time is precious? You're more than 15 minutes late. We need to reschedule your pass today. I don't have clocks in there. What do they think we don't have a phone on us? Right. But I think we feel very desperate. You have someone so we're going to maybe change and be nice, maybe that's going to do it. The fact is, is that the doctors or the IOC doctors because other people can diagnose ADHD have been taught a different language to listen for. And we're walking in there saying, I can't get my laundry done. I can't get to work on time, I'm forgetting to pick up my kids at work. That's not translating to them as I'm forgetful. I'm distracted. I, you know, all of that is not so how does the medical profession are the words that the doctor is going to hear? It's not putting words in people's mouths. They're just not listening for that. And to change that model. It's not going to happen. 20 years, not going to happen.
31:27
Yeah, I actually worked for the chief academic officer who trained who was the medical over the medical students. And that's when I figured out this is never. And I left all I left, I left the healthcare industry. And I didn't share my pain from somebody who's also a practitioner, a psychotherapist, an ADHD coach, and I was diagnosed, so I was in my 50s. And you know, what I find with the women that come to me every day, getting a proper diagnosis, as I always say, you know, people say, Should I get diagnosed? I'm like, yes, it's a privilege, it is not a right. And that's what really makes me upset, you know, so as somebody who is a practitioner, I don't really think about ADHD, let alone being for adults. And for the women that I know, like, they will walk into an office, and the bias that they'll get from a lot of sci fi options, you know, via conscious or unconscious, is that you're already logging in anything that you say is wrong, as you're just saying, or it's like, if you're upset, because you don't know what is quite going on. And everybody's judging you, you have anxiety, or depression, or you're bipolar, or you're just right, we're not gonna we're not going to give you the benefit of any type of diagnosis. I also have a lot of women who are really, really, really, really high achievers. So they have lots of threes, they do lots of different things. And they do a lot of masking. And so when they walk into a clinicians office, no one will diagnose them because they're like, well, your doctor, your veterinarian, you're a lawyer, you have ADHD, we can't have anything PhD. So I have to give language around it I to try to find providers for people. And that's why, you know, as I'm starting, like ADHD Coaches Association, it's also going to be allied professionals, so to have professionals that we know, ADHD, adult ADHD, and are willing to listen to people where they are, and if they would like medications, prescribing because then there's also the issue of not just wanting to prescribe what that means. They don't really understand how it is affected by your age, but not maybe as much as they think. So having people at on already understand, I think that might be the only way to be able to get other professionals to understand is by professionals that are like that, to have those conversations. So it's a question of the senior my peers off here. So some of us have been doing this and trying to do what you're talking about English for the last 2530 years is, I think, Linda, you started off by saying, Maybe I'm wrong, that you see some progress with maybe the research part of it. I don't remember now, but I personally am not seeing a huge leap from what I was doing that in 95 she went on doing now I think I do see a change in more women inquiring like could this be something besides depression or anxiety or substance abuse? What I'm not seeing that in the professional so much. I'm curious to hear what the rest of the panel has to say about what changes what have we seen in the last 2530 years?
34:35
For me, like one of the big things is social media. You know, it's like before, some some decades ago or whatever, you wouldn't be on an internet yet. They think this online thing this community everywhere is where you can start for me, it will change restarts. When you go you can either wait for things to come up from the top of the pyramid down, or you can just work on the basis and or It will take us some time. But at least now you can have access to almost everything, you can speak about everything. And so you get women and you can request what you can do it even here in Argentina. So if you can do it here, you can do it everywhere you know, you can actually now you can tell doctors, you are wrong. And I know about because I read about educate myself, you are telling me that ADHD, you cannot say that anymore. Because I know. And I know it is because I don't know when I can do it now, because we are able to use this that we are using, you put all the information out so everyone else can have access to it. I think that's a big one. I think that was when Jerry said there's not been much progress, the ratio of boys to girls that were diagnosed was 10 to 120 years ago. Now it is three to one. So more and more girls are being diagnosed. When you get to adult level. It's even Steven, there's one one woman to every man or one adult person, I'm not going to go into all the gender issues because I'll forget somebody. But you hear my point here is that we really, we really, truly have made some progress. And mostly it's women who come saying something's wrong. So I think you're absolutely right. There's more awareness out there at least. And even having I know, medication is a touchy subject, but even having advertisements for ADHD medication makes a difference. And we all know that a lot of women are diagnosed with ADHD or a lot of moms are diagnosed with ADHD when their children are even that kind of filters out. So I believe here, we got a long way to go. But Virginia slants we've come a long
36:59
way. Let me get back to why I focus on one of my groups, a lot of different groups. Well, one of the groups I have here, I see you, we see you, we're gonna give you a question. Okay.
37:11
What are the groups that are run on Facebook as a free support group, specifically for women who identify people who identify as women, I have 36,000 Women in this group. That group has been running for about 20 some odd years. And I hear the same thing. My doctor doesn't understand. I don't know what medication is. Why is this happening to me? And it's like, I'm just it's, it's very frustrating for me, because trying to get the education or the to the women, like we're all trying to do. And we're doing that here tonight. And then hearing the same questions over and over. So Linda, I agree with you that the stats are changing and more women are being identified. But why am I still getting the same?
37:55
I think we all are, I think we all are. And it is really frustrating. We hear the same questions over and over and over. But that just means that the information hasn't seeped into that corner of the universe, right?
38:07
So it wasn't like in US troops and you run groups in a lot of groups, what can we do to the this huge, huge amount of women who are searching for help for understanding it and sharing it within there? We're not getting it out further than that.
38:23
That's why That's why we're doing this. So that we can all be in the same room at the same time. And actually, because when will we all be able to get together all of us in one place and one space to even talk about it? I think that's what's exciting about this, we actually make time to do this. And that's how we do it. I think that's how it's gonna get. We have a mirror that Amira has a question.
38:47
Linda just now was talking about how you have anecdotal data from like, 125 women from a survey of 100 women, there are 125 questions.
38:58
Oh, wow. I was just wondering, I mean, I'm not an expert or anything, but I'm just wondering, I know that medical journals are a lot more stringent when it comes to the sampling and the methodology. But they are I think, and Victoria probably would know, even better than I do. There are a lot of social science journals and humanities journals that actually appreciate. And they don't just, you know, accept it, but they appreciate data based on lived experience. So look, here's data from just like, you know, several women like 10 women or 20 Women can be accepted, I think in those kinds of journals. So if you've got 2500 That's probably something that those kinds of journals would probably be willing to consider. Although I know that if you go into social science journals, that's probably not going to help change things in the medical professions because the medical sciences or the health lines is probably they don't really think much I think in general, the social science journals but just like what Victoria was seem just now. And I think, Linda as well, what happens is that, in the social sciences, I think it's just really spreading is probably like the next big thing kind of thing, like, Victoria was saying, and I'm noticing that, in my own country in Malaysia, part of 1018 or so there was just no resources for ADHD. And then a few people kind of got together and started groups or Facebook groups, and it kind of grew from that, and now we're reviving, we're growing. So social media plays a big role in the grow, of knowledge and the growth of the community, and the support within my country alone. And, of course, most of the doctors are not really doing most of the psychiatrists and aren't really joining that community. But when you have one or two psychiatrists, or clinicians or psychologists who do join that community, their voices actually have to amplify our needs. And we're looking for the kind of support that we're looking for. And that is really helpful in terms of trying to get a foot in the door. So I'm now trying to hadn't started yet through my ADHD, I'm trying to write out a research proposal to request for a grant to do some research on ADHD. And that would have been something I wouldn't have considered some time ago. But now I actually have this group, this kind of like, isn't legitimate group with a legitimate psychiatrist. Tap on and say, hey, you know, I have external collaborators, who I can call upon. And just by doing that, I think my proposal when it gets done, finally, whether or not I get it, you know, the story, but you wouldn't be considered rude, you just dismissed. I just wanted to share about that. And just one other thing I wanted to share also, about students are I working in a university in Malaysia, and I have research students, but I'm not an HR professional. In the social sciences, I had two students, one applied to do research with me, and he wanted to do some kind of study on media portrayal of Alzheimer's disease. And I had another student who wanted to look at the impact of apps or social media, and how it helps people with mental illness or depression. And these aren't my areas of expertise. But I did ask them, would they consider doing a similar study, but looking at the ADHD population, and they were open to it. And it's not something that you can't force people to do teach your research that that wouldn't be ethical. And it wouldn't work anyway. They're not interested. But they were open to it. I gave the resources money. And they found it fascinating. And now they're actually quite open to switching their population to looking at the ADHD problem. So yeah, just wanted to share about that. Thank you so much. Lisa, you know, Ohio after a mirror,
Patricia Sung 43:02
before Lisa stepped up, we have some audience questions whenever we're ready. Do you want me to go or Lisa?
43:13
She view as you probably have questions before, we are actually meeting with an IRA on Thursday and get on this thing because students going on. So that's what I meant is like, it is happening. It is happening sooner than later. Oh, Terry asked the question about what are we known as those of us that have, you know, are here because of the length of time we've been doing this? And I really wanted to go back to that, because it's one of the things that is very difficult, and about doing this for 20 years, is that whatever the numbers are saying, and I thank you, Linda, for sharing those that I do get asked the same questions. And it's still surprising to me. And I thought that we started doing this guys, before there was the internet. I thought, oh, gosh, the internet's here, everybody's gonna find out the information. That can change anything, you don't really think of your social media is here. So Gosh, darn, that's gonna get the message out. There doesn't seem to have changed either. I just kind of wanted to echo what you were saying. Because I think when we've spent so much of our lives, so Linda and Lynn, Harry and myself doing this, it can be a bit disheartening to see a little change in not enough when we realized how many other women are struggling with this and not knowing this and young girls and older women who are struggling liveness one of the things that I noticed that I have started to do in our training program, because it's just something that is not doesn't have anything to do with somebody doing research that one day or waiting years to get that and then moving somebody pays attention is I truly encourage mice students to talk about this are this is we can do this today, are we talking about ADHD, and sharing with people about what we know if they're wanting to know about it, I think that's one of the things why ADHD has stayed in the closet so long, not only for women, but also for an entire population, we need to get comfortable talking about this, and then that other person who are comfortable talking to us about it, I believe that that's a huge tip that we can do every day to make a difference in the awareness of ADHD. Absolutely.
45:38
One of the ways around that is from what I'm hearing a lot over the years and sense of shame that so many, if not most women are experiencing, and then they don't want to share their difficulties or diagnosis, if they're lucky to get an accurate one with other people, let alone the professionals. And I think that professionals, for the most part, don't understand that piece
45:59
of it. And if we do end up putting Terry, like, we've been talking about this forever, I mean, we know we get the deer in the headlights look, right, we know that people step back, and they're gonna catch it from us.
46:16
We know this, and yet, I mean, we're always going to be right. We talked about a comfortable way that shame of that person, hearing us not being ashamed of it, a lot allows them to maybe share a little bit, I really believe that that is a huge piece of relying on these big things to make the change, like it's going to trickle down to all the people that are impacted by ADHD. necessarily grassroots, but just talking to other people who you mentioned, you're an ADHD coach, or you work in the ag industry. And they say, Oh, my gosh, I have ADHD and all of us have had multiple times. Talk about it with them if they want to ring that chain. So we're going to need to be ambassadors of sort of masters.
47:18
But I will say on the flip side, for many people of color, this is a safety issue. People cannot walk and just decide they're just going to disclose they have ADHD. So it's just something to really look at in a way that works for everyone. You know, I'm out here doing this, being out there showing, you know, things that I can do, and having my group for a lot of women who are misunderstood, and they realize it's a safety issue. We're already misunderstood. And then we add ADHD on top of it, you know, it can really just blow your life up, or you're in a family where they really just don't think that ADHD is a thing. So you have to think about it and tread lightly and have small conversations sometimes that lead to bigger conversations, because some of the safety concerns that I see on a daily basis just doesn't allow for that to be a blanket statement. I apologize, I came across. Somebody comes up to you and wants to start talking about it.
48:20
Honestly, if somebody wants to talk about it, I'm willing to I'm certainly not going to open up a conversation with somebody is not. I do think though that my comfort level of being able to talk about it, if somebody's wanting to explore it helps them be able to be a little if nothing else, have a community where they feel understood, which has been sorely lacking for them. We all have
48:50
Patricia has some questions. And then we've got Lisa in Ohio and then I'm gonna say like, what is it 631 We started literally, we'll go a little mini with like 10 more minutes with this and then we'll flip flip side to the bipod panel. But it sounds like everybody's just jumping in so we can keep it like this. If you guys have time, if you have to leave I understand I really wanted to honor you and appreciate you and leaves you been very quiet in some way,
Patricia Sung 49:18
okay, um, to stick concern, the same theme is the women are asking What specifically can we share both with professionals and with others in order to spread awareness? Like, can we give some specific examples that people can use?
49:33
It's like, you were saying, like the examples? Yeah, for me, the big one is, I kind of do my laundry. I forget to wash my hair. I know I go to work and I forgot my charger. So I got my computer, but then I can plug in anywhere. So what's the use of taking my computer? Or I forgot my computer and then I think someone stole it or whatever. Yeah, and I get into this panic things. And so for me, it's like make it real, you know? And I get lost. What you're saying is, as more confident as we get with everything, you know, it's like how big ADHD is this gigantic data that gets pulled over a life, and you start scoring those small spots. And if you're, let's get organized, and I realized I was not like the last, I don't even know what to do with whatever and everyone was celebrating, you know why they weren't like that centimeter here in the floor, that's great woman. I get celebrated for this.
50:34
Sharing. That's what I would say, you know, and that's my, like, social media media, and everyone is sharing all these perfect lives that I feel like just annoying. So while just sharing who you are, and let other people say, Well, I can relate to that. That means that I have ADHD. And I said, Yeah, most probably most probably got an another doctor or whatever. But if I can, and I like, say that I'm not upside or whatever, I'm not a psychologist. And all those things are, so no one can take degrees from me. So yeah. In my way, you might so just explore it, it doesn't you don't waste anything, it's running here. And at the very least, you will not feel so bad. Because we're getting your children at school, even if you're an amazing man. And you came back from work and you're having a cup of tea. And it's like, where are they? Rushing brushing up? Because we forgot them? Yeah. Mom, we're where are you? And I just came very late from work. And he said, No. I have friends that exactly same thing happened to them. And I was rushing to school saying, Where are you at? Did you pick your kids up? To speak my place? And say, where are you?
Patricia Sung 51:51
I suppose I forgot those things, you know,
51:56
just as it relates with and I think it's even more than a community exists. You know, it's like, this happens to you because you're a woman and you're a mother and you are picking them up.
52:08
That's why you forgotten years ago, can even now the pharmaceuticals would publish these little pamphlets and stick them in the doctor's offices. And And wouldn't it be great if we could do that just for women without having to rely on the pharmaceutical but have someone to donate money. And then all these people that we run into as clinicians as people with ADHD themselves and just you know, you go to your doctor, you drop it off, and then put it on the desk? Or ask the receptionist? Can you give this to the doctor, maybe the doctor will learn something? I'd like to ask all of you, because this is my experience. I don't think I don't have any neurologist and understand ADHD and adults, neurologists. So Lisa has a question in Ohio, and Ohio.
52:51
So I keep hearing, we need this information you need to get information out. I think we need to have one Clearinghouse because it's like I can go to the woman Palooza and I can look at their videos, or I can do an add A and I can look at their webinar series. Or I can go to attitude vaccine and I can look them up or I can go to Amazon and look up what it goes on. And that isn't helpful for ad when I would like to see this sort of a platform neutral or organization neutral clearing house, it gives us one place here books that you know, you have a small group of people who maybe just sort of make sure you know there's here decent, you know, here are current researchers here is a rogue willing, he's already gotten the show Martell in addition to the researcher in the Netherlands, you know, here are people doing her research, here's links to free. I don't remember if it's lost, because I know a lot of nationalist researches articles are free and just have the clearing house so that not only can meet set other women there. But if our physicians or psychiatrists are vaguely interested, don't make them do the research. They're not going to do just that. Check out this website. And if they have a little bit of interest, maybe they'll look at it but then they can get what they want. And I can give you my name I'm willing to work. I'm interested. So I can send my name and email to.
54:34
Yeah, actually email me Michelle, that tries to add gotta work for Shell dot price.So we have a list if you signed up, you RSVP to this in we have your name. And if you didn't, we'll send out an email to get information.
54:54
I just wanted to throw that out there. And I try not to stir up ideas without being willing to you know work before I was going to bed so thank you so much. Thank you and respect and volunteer work. So I think that's a great idea Lisa. I love that idea cleared house all women with ADHD would have had that. But now I'm surprised we don't think about it.
55:23
That's why we're all together because together is better. So you know what I'd like to wrap this session. If anybody has any more questions, something they want to say we can start the next session. We're Inger Shea is going to kind of kick it off. Are we good? We have other questions. Are you gonna do you guys want to hang out? Because we'll all hang out for the next panel? If you can, you can if you can't, no problem. Patricia, you got more questions.
Patricia Sung 55:47
The other one I have pending is about PMS and ADHD symptoms. And then specific resources that Sunita had talked about in how to share with your community. They wanted some more specific examples from her, basically, what can we do about it? How can we improve symptoms around the time when we have big hormone fluctuations,
56:09
ADHD are more likely to have PMDD, which is an extreme versions of PMS because of estrogen. And right before you start your period, your estrogen just goes away. I mean, estrogen and progesterone hit the bottom. And that's exactly the time that your ADHD symptoms go through the roof. And so if you're taking medication, sometimes increasing medication will help a little bit. I had irregular periods, so I couldn't predict at all. But if you have regular periods, you're going to be able to tell. So avoid planning things that require a lot of brainpower in that time. And the other thing is that you understand your coins and appreciate somebody putting their names or spelling of her name there. Remember, the woman from the Netherlands has found that a small dose for three or four days of antidepressant actually helps, which is counterintuitive, because use the antidepressants are supposed to be on board for two weeks before they even take effect. But she's had good luck with that. So he just wanted to mention that. But that's all what
57:05
that is. I have never, ever heard that. And I had the worst periods ever from the time I was 11 years old. I mean, the pain was just unbearable.
57:18
I thought the sky was falling. I mean, I wasn't even now. I don't actually like
57:26
you're right. It doesn't make placebo. Who knows? Who doesn't know, maybe they've done that study? I don't know. But I would think as you said, they're considering that. The reason that so many women are diagnosed with ADHD in menopause is because of that drop in estrogen. That happens, every cycle we have in our menses, I kind of wonder why isn't there a few days a week, we use this as a tool and occasion as a tool or something that during that particular time of our cycle, and any new would make a huge difference. I remember that I would not have an exam, I didn't have that much control. For Kids behavior during my my right before my period, that was not going to happen. I honestly think these kinds of things I would love to see us expand into not just once you've been diagnosed and you're taking it everyday, but how can we use it as a tool, even during that time, to help people, women to help women who are having those extreme symptoms with their periods?
58:38
And Laurie, another another point for what we're talking about tonight is how many OBGYN is understand hormonal changes. Because Dr. Peck when it when she was with us to talk about what about hormone replacement, she found that helpful with her patients, but we don't let alone not understand he would have overall complications. I grew up.
59:04
I grew up father who was an OBGYN, least supportive, empathetic, and I knew about possibly somebody.
59:15
And yet we know exactly what's happening and helps to make sense of what we were experiencing. And why do our young women have to continue to do that when we know what works?
59:30
I think that's why you know, two heads are better than one and we got a whole bunch of heads in here. That has really jumped the edge and that was your question or were you wanting to ask the question,
59:40
I want to ask the question. Are there any research organizations or websites or just research people in general, other than Dr Khoi that we can follow research as it develops.
1:00:03
For women In this unlike my TDM a lot of work with the intersection of trauma and addiction which that's a whole market we haven't even touched yet woman in England she goes back and forth several copies I had her on was an issue and specifically working with hormones and and I'm sorry I
Patricia Sung 1:00:48
be sure to stay tuned for our next episode where we'll listen to part two. Talk to you soon successful mama. For more resources, classes and community, head over to my website motherhood in feed hd.com