Session 197: ADHD Diagnosis Later In Life

Session 197: ADHD Diagnosis Later In Life

Dr. Joy: Hey, y'all! Thanks so much for joining me for Session 197 of the Therapy for Black Girls podcast. We'll get into the episode right after a word from our sponsors.

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According to an article from Verywell Mind, ADHD symptoms in girls are often explained as character traits rather than ADHD. Girls might be thought of as spacey, as daydreamers, forgetful or chatty. And later in life, a woman might reach out for help for ADHD, only to be diagnosed with depression or anxiety instead. To help us explore what it might look like to have a diagnosis of ADHD later in life, I'm joined today by two very special guests: Inger Shaye Colzie and René Brooks.

Inger Shaye is an ADHD coach and psychotherapist specializing in making a difference for black women executives and entrepreneurs, supporting women through clarity, empowerment and resilience. She has successfully run her practice–Alchemy Coaching and Counseling–as a therapist and licensed clinical social worker for 15 years, in spite of being undiagnosed until her 50s. She offers the benefits of professional expertise with a lifetime of experience.

René is the founder of Black Girl Lost Keys, a blog that empowers black women with ADHD and shows them how to live well with the disorder. In addition to Black Girl Lost Keys, she has also written for Healthline and as a patient contributor to Teva Pharmaceutical’s Life Effects project.

During our conversations, we chatted about the impact of being diagnosed with ADHD later in life, why black women are commonly misdiagnosed, how a later in life diagnosis impacts things like self-esteem and identity, and some helpful tools and resources for anyone who might need them. If there's something that resonates with you while enjoying our conversations, please share with us on social media using the hashtag #TBGinSession. Here's our conversation.

Dr. Joy: Thank you so much for joining us today, Inger Shaye.

Inger Shaye: Thank you so much for having me.

Dr. Joy: I'm happy to have you as a follow up. In Session 66 of the podcast, we talked with psychiatrist Dr. Dawn Brown about some of the fundamentals of ADHD. But I’d love for you to give us a recap or a refresher for anybody who maybe didn't catch that episode, just about the different types of ADHD.

Inger Shaye: Well, there are a few types of ADHD. There is the hyperactive type, which is what you're used to normally seeing when you talk about ADHD. A lot of times that is what is connected to young boys falling out of their chairs and bouncing around and that's what people usually think about ADHD. There is the inattentive type which is more of a daydreamer type where sometimes people seem spacey, people seem like they are just not really paying attention and sometimes they just feel like they're introverted or quiet.

And then there's the combined type, where you have different parts of each of the ADHD. So you can have hyperactivity, but as an adult that may go inward and manifests as anxiety. And then you also might have the inattentive part of the combined type, where you aren't just able to focus on things that you might need to focus on, that are not of interest to you.

Dr. Joy: Mm hmm. Got it. And I'd love to hear more about your background, Inger Shaye. You have background as a therapist, but you shifted more towards ADHD coaching. I'd love to hear more about how you made that shift. Was there something in particular in your practice that led you to kind of shift to that specialty?

Inger Shaye: I didn't realize I had ADHD. I was not diagnosed until I was in my 50s. I was always the kid that had so much potential, so much potential, but always felt like they were behind. It took me actually eight years to get through undergrad (shout out to Virginia State University, and my parents who kept sending me back) because I couldn't figure out how to get my assignments turned in on time or go to class without the structure. But when I finished school, I was able to manage to have jobs that sometimes were great for me and sometimes weren't, and I decided to have my own practice. I went back to grad school when I was in my 40s and I got pregnant at that time and I managed to finish grad school with a baby (pregnant and then with a baby) on time. So who knew that when you could get hyper focused that that could help you?

But I always was just thinking that I wasn't quite where I needed to be. I had my practice and it was successful and it was fine, but it was kind of like... I call it the duck analogy, where everything was great on the surface but it was *[inaudible 0:06:51] my heart out underneath. And it wasn't until my son was diagnosed with ADHD that I realized that I had ADHD and that’s what was going on. I was not able to get treatment for like another year or two because I was so busy dealing with all the different parts of ADHD for my son, but when I got diagnosed and I got treatment and I got some coaching, I realized how powerful it was to be able to take care of that. Because that is what enabled me to be so much more successful in all aspects of my life and that's why I turned in my practice and now I do ADHD coaching.

Dr. Joy: It's so interesting that you’ve mentioned that, Inger Shaye, about not knowing that you had ADHD until your son was diagnosed. I feel like that's a common theme, like I've heard that story several times. What do you think it's about? Do you think it's just more exposure to the different kinds of symptoms or is there something else there?

Inger Shaye: What usually happens is that a lot of people don't even really know what ADHD is or what the symptoms are. A lot of times, people dismiss what's happening and they just go on about their business. Especially in the black community, a lot of times we don't even want to know that ADHD exists. Usually it's your son that’s diagnosed and that's when you go, “Oh, that could be me,” because it's picked up more in boys. And when you fill out like the different rating scales, it's like, oh, yeah, that applies to me. And that is why a lot of women are undiagnosed, especially in the black community, because they just are not aware or they don’t want to be able to have to deal with that because we've got so much more things going on.

Dr. Joy: So in addition to the not wanting to necessarily know the full truth about the symptoms, do you think that there are other challenges for black women who are seeking diagnosis and then treatment?

Inger Shaye: Oh, absolutely. I think it's not necessarily even just don't want to know what’s going on; people don't know about ADHD. Most of the research is on young white boys so the fact that that's where the research is, there is not even research that correlates with us. I am in my 50s, so I didn’t even know that ADHD existed and my parents didn’t back then; you just had to figure it out, like get your work arounds together. Now, more people know than ever, but still people are walking around undiagnosed and just wondering why they aren't quite able to reach the potential that they think they have.

I've tried to be out there advocating so that people do know that ADHD exists and it exists for women, exists for adults, because there's also that perception that you can grow out of ADHD. There's a small percentage of the population that does but most people do not, and the fact that that is a misperception also, is another reason why people aren't able to get diagnosis.

When the clinicians aren't really well versed in ADHD, they'll look at some of the symptoms and they'll, a lot of times, look at black women and have a bias and say, oh, it's bipolar, or it's just depression or it's just anxiety. And when you treat the ADHD, if you know about it, then you can treat the anxiety, you can treat the depression, because once you treat those symptoms, it helps to resolve the other comorbidities.

Dr. Joy: And can you talk a little bit about some of those symptoms that are often missed or often diagnosed as something else?

Inger Shaye: Yes. Many times, because when you feel like you're failing... Because the ADHD, you might find that you are working twice as hard as some of the people that you work with or look around some of your friends and it seems like they're doing things flawlessly and easily, and you have to work twice as hard because you may have inattention to many things that are important to you. Because we have an interest-based attention system. You may also notice that as women, mothers, we're not getting dinner on the table on time. And when shame comes into play, that leads to depression.

When shame comes into play, it can lead to anxiety as you're trying to keep up with everyone else. Then when you go into a psychiatrist's office or your therapist’s office and you say “I'm depressed, I feel like I'm inadequate,” they don't always look at ADHD. So they will look at these other symptoms that they know well and if it checks those boxes but when they aren't as well versed in how ADHD affects people, they will totally miss that that is part of the condition.

Dr. Joy: Why do you think they go so extreme as bipolar? I do feel like, in some ways, bipolar tends to be like a catch-all when people don't quite know exactly what's happening. But do you think there's something else there for why the extreme of a bipolar disorder?

Inger Shaye: I think some of it may have to do with bias. When women of color can report different things with their emotional regulation, sometimes just always feeling like someone is not understanding how they're feeling, that they're feeling like people are just coming at them–called RSD, rejection sensitivity score (that's coined by Dr. William Dodson, it’s now in the DSM). And what they don't look at is that the emotional piece of ADHD is really one of the biggest triggers of what's going on. Because as our emotions go, that is how we're able to regulate all the things that are like motivation and organization and getting over the procrastination.

And what will happen is you may end up with imposter syndrome, which can then look like you’re dysregulated because you are not living into the potential that you have. And again, shame. Shame and *[inaudible 0:12:27] are the hallmarks of ADHD symptoms that are devastating to women and clinicians can look at that as having bipolar. Especially when the clinician isn't well versed in ADHD. And I think the bias of black women, we're told a lot of times, “We're just too much. You're just too much. You just need to calm down over there.” And when you have that type of bias, conscious or unconscious, when you're looking at the ways to diagnose, that seems to happen more often.

Dr. Joy: Got it. You’ve mentioned, Inger Shaye, that a turning point for you was receiving ADHD coaching to help with your own symptoms. Can you talk a little bit about the difference between ADHD coaching and therapy and how might someone know whether they need one or the other?

Inger Shaye: Well, it depends. Because actually, you may need both though coaching and therapy are different. Coaching is where you're going to look forward at your goals and different ways that you can look at the ADHD and stir up the strength–because when we delve into our strengths, that's the reason why we're able to move forward. Sometimes we cannot connect what we are actually doing to what is going on in our lives with ADHD. There is that disconnect that goes on with that.

So when you have coaching, we're able to look at the ADHD and be more productive with it. How you can use your strengths to be able to help you moving forward. When you're in therapy, you're going to actually have a diagnosable condition that has to be addressed in a therapy because coaches are not therapists. If you have a coach that's trying to be a therapist, run away because we go through a lot of training to become therapists and I think it's very important to have that distinction between the two. I live in Pennsylvania, you'd have to actually have two separate businesses to be able to do both because it's just so important to make sure that there's a designation between the two.

Dr. Joy: Right. And is that something that some therapists... I would imagine that some therapists do more of that hands-on kind of future facing? Like, okay, these are the ways we can help you to organize. So is there some crossover there sometimes?

Inger Shaye: There absolutely could be some crossover there sometimes, depending on the therapist and what they are doing. When you're doing coaching, it's not just we're going to tell you how to wake up 10 minutes earlier so that you can get out of the door on time. Or we’re going to tell you like use this planner in order to be able to organize your life. When you do coaching, we’ll look at your big why–why you're doing things, what you're interested in, how you're able to then like tether together the different parts of your life to be able to be successful.

And what I find happens a lot is that people will collapse everything together and people with ADHD, our attention span because we can collapse everything together, like if I'm late then that must mean that I don't care, that must mean that I am not good enough. I must not care about getting to work on time, even though I might be getting fired if I’m late one more time. We can collapse all this together instead of being able to parcel them out saying, “Hey, my attention span, my interest-base is not necessarily allowing me to go to sleep earlier.” Because our circadian rhythms can be a little different, that can prevent us from getting up on time. Or having the why of, “Oh, I know that this particular job is one that really interests me, I can get to work on time.” We'll work on things like that with coaching. Whereas sometimes in therapy, we’ll work on the parts that are more of the shame piece there or different ways it affects your brain, and a lot of psychoeducation.

Dr. Joy: Got it. Thank you so much for that. Can you talk about the idea of masking as it relates to ADHD and how that develops for people who are trying to manage those symptoms?

Inger Shaye: Yes. What happens with masking is that, again, a lot of times we'll feel like we are not able to keep up, we're not able to do some of the things like our coworkers do. And what we will do is attempt to be just like our other coworkers as a safety mechanism to be able to function in the workplace. So be on time or ask people to sometimes cover up for some of our mistakes, and we will not be exactly who we are. That's a lot of burden, that takes up a lot of mental energy. And we with ADHD, our bandwidth can sometimes be a little lesser so that then leads to it can be like a vicious cycle. Where you’re using all your bandwidth trying to pretend that you are something you’re not. And instead of doing the things that you know you can do, that you are really strong at, you then are feeling bad about yourself again.

Dr. Joy: Mm hmm. Yeah. And I would imagine, and I would love to hear your input about this, that the masking then leads to all these other difficulties. So we've already talked about how often and this has been your own experience of being diagnosed later in life. Can you talk about maybe some of the challenges you've experienced, as well as any of your clients, around identity and self-esteem when it comes to being diagnosed later in life?

Inger Shaye: Yes. I was diagnosed later in life and I had no idea. And it's really interesting, being a therapist. I know when I went to school, we didn't get much on ADHD. It was a condition that was more for children, it didn't occur to me that I had it. And many of my clients come and they think they may have something, they know that they are really running behind, they feel like they are just at their wit's end and they can't keep up and they want something that they can do to finally be successful.

For myself, I had a successful practice, I had a child, a relationship, but I was like on a hamster wheel that was killing me. I was running around doing everything for everyone, feeling a lot of the weight and responsibility for my clients and my family. And it was killing me, quite frankly, that strong black woman thing that I was carrying (and that was part of my ADHD) was killing me. Once I was able to know that I had ADHD and I was able to figure out that I didn't even know that I would collapse things like that–that if I did things for people, then maybe I would not feel so behind. Once I was able to figure out how to get off the hamster wheel and be with who I am and have a little self-compassion for myself and then shore up the things that I needed to be able to shore up. I needed to show up on time and be able to organize and do these things. Once I was able to do that and not have any shame around it, I was able to blossom and really delve into my strengths and actually my practice has grown and I enjoy it. I have a coaching practice.

Dr. Joy: Do you feel like your late diagnosis, Inger Shaye, has given you additional perspective and tools that you're then able to pass off to your coaching clients?

Inger Shaye: Yes, absolutely. Because having to have workarounds all of my life, it allowed me to be able to have a kind of grit and strength that I can pass on to my clients. I also hold space for them, letting them know that I can see the strength that they have even when they can't see it to begin with. And what you need to do when you're looking at your ADHD is to get educated, to know what ADHD is and how it affects you because it’s consistently inconsistent.

It's different for everybody, a little different for each person, but when you can figure out how your ADHD affects you is when you can then use the strength part of your ADHD to be effective. And I've been able to learn that through the years, having this late stage diagnosis, and to also let people know that they too can be successful with ADHD. It is not a death sentence as a lot of people feel when they have that diagnosis, that they're not going to be able to be successful. It's one of the most manageable mental health conditions there are out there. You're able to have a really wonderful successful life.

Dr. Joy: Can you give us a little bit of an example of what it's like for you to work with a client? Let's say you have a new coaching client who has been recently diagnosed with ADHD; what are maybe some of the first things that you do with them?

Inger Shaye: One of the first things I do with them, I normalize the condition and I just say it's okay because you are here and we're going to help you to be successful. And many people, they just feel like they are alone and it actually saddens me when they come and they feel awkward, so I normalize the condition, give them some education. And then we begin to work on what would be a way that they could be successful? What are the things that they have interest in? What are the things that light them up? The ways that they are creative, the ways they’ve already had workarounds that work for them.

Many times, with ADHD, we're unable to look back and tether the way that we were able to deal with things. When you can look back and reflect on that and then bring that to the future, that's always very helpful. Because many times with ADHD, the way that our interest-based attention spans are, we don't look at how we were successful and how we are able to then use that in other realms to be successful. And when we can tether those two things together, it's really helpful. Usually, it's the most wonderful thing when the client can get the “Aha!” and be able to tether those things together and realize that they can be successful in life. Because they can see the different ways they'd be successful and say, “I can take this over to here or I can take this over there.” They can be who they actually are.

Community is also really important because when you're always just feeling like it's just you, when you're in a room in a space with other people that have ADHD–that sometimes talk over each other or sometimes forgot to be organized or their dinner got on the table at 10:30–you feel like you're not the only person out there that has these things. And that's where the healing begins and I think that that is what's most important.

Dr. Joy: And I'm curious, how are people finding you? Are you kind of getting referrals from like the psychiatrists or the other practitioners who are doing the evaluations? How do people most likely find you?

Inger Shaye: Some people find me through directories, I've been doing a lot of speaking lately, (I spoke at the International ADHD Conference last year) and a lot of word of mouth. A lot of word of mouth. You'd be surprised how many people don't know they have ADHD but when they find out, they will be like, oh, here is a black woman who’s doing coaching. Because we're not so easy to find. Sometimes we are working in silos. We're trying to come together more. I actually started a national association for black ADHD coaches so that we can be together, we can fellowship together, we can have a directory, we can have a way that people can find us in one space, instead of having to kind of look all over the place for us.

Dr. Joy: Got it. I'm glad that you started that. That sounds like it's gonna be super helpful for people.

Inger Shaye: Yes. We're very excited, very excited about getting it started. Because I know that even as a coach myself, trying to find a coach for my son has not been easy. It has not been easy to find like a black male coach and that's really part of what spurred this on. Also, when I have been to the ADHD conferences, not seeing a lot of black coaches and I know that we're out here. So this way, we too can be together and hopefully provide like even some trainings and things like that.

Dr. Joy: Mm hmm. I would imagine, like most things, the pandemic has shifted your work and what the world looks like for your clients. How have you had to kind of adapt in your work with clients? And how are you working with them to create new strategies, new routines, kind of in light of everything that's going on?

Inger Shaye: Yes, the pandemic has affected all of us but all in different ways. Many times, having ADHD it's already difficult. Some people have really enjoyed not necessarily having to go out and be amongst the people. They get a chance to kind of like sit down and deal with some of the things that are happening with the ADHD, and it's slowed down a bit and that's actually been great for them.

I also have clients that have then had to figure out shifting with children at home and being able to do their work, not having the structures that they may have had, being able to not have that work environment of people together. Because that work environment of having people together also helps to spur getting your work done. So we've had to do different things like provide coworking spaces over Zoom, provided for people to be able to come together and have that kind of communal space to work. I've also been able to just discuss the fact that it is a pandemic and all these things have been different. You're gonna have to figure out just different strategies to be able to be as productive. And sometimes even bringing your children in and explaining to your bosses that this is what's actually happening here. Like, this is what's happening here for us and this is the ways that we're gonna have to have workarounds around it.

Dr. Joy: Speaking of children, I wonder if you can give some suggestions for people who may be similar to you, who find themselves as a parent with ADHD also parenting a child with ADHD. Are there some things that you would share with them?

Inger Shaye: Yes, absolutely. First off, yes, it is a difficult thing and I understand. I feel you. Because when you yourself have ADHD as a parent, you are trying to do all the things you can for your child and you also see all the things that might concern you about yourself and your child too, and that can lead to sometimes just a little bit of confrontation. But there are different ways you have to parent your child than maybe we are used to parenting, that other people might see and they might not understand, to really be able to drill into the different ways of parenting.

CHADD is an association that does a lot of parent training. I am on the board of Philadelphia CHADD, of the Executive Planning Committee, where they give you different strategies. Actually, they have a free training right now that they are putting out for parents because there are many different ways that you should be able to give your children like a reward system but also give them the consequences. Children of ADHD, they get like 12,000 more negative responses than positive responses, like I think it’s by the time they are age 10. So to be able to learn how to use the different reward systems than you would normally have, the way to actually normalize even for your child that this is not a behavioral condition; that this is a brain-based condition.

And I think that that's really important because many people will see a child that has impulsivity as a child that they call bad. Where it's really their brain. It's a brain-based condition. And allowing that to play out and to be able to deal with your child on that level versus many schools use discipline, which is not really effective for children with ADHD.

Dr. Joy: Right, because it's not a discipline issue.

Inger Shaye: No, not at all.

Dr. Joy: Yeah. What are some of your other favorite resources, Inger Shaye? Things that you think that have been helpful for your clients as well as things that you kind of find yourself referring to over and over again.

Inger Shaye: I actually listen to a lot of different podcasts–Translating ADHD is one of my favorites. One of my good friends, René Brooks, she has a blog called Black Girl Lost Keys; that's very helpful. I have a Facebook group that I provide community for, it's called Black Women with ADHD Executives & Entrepreneurs. And in there, we have a fellowship and we work on goals and we'll have co working sessions in there. I'm looking at putting out a book there, like a workbook for black women. So we're just trying out different resources to be able to meet and have community and give coaching to people who might not be able to afford coaching. So that's also part of having the national alliance of black ADHD coaches. We want to be able to have a portion where we're able to make sure that everyone can get any of the help that they need.

We are also finding that sometimes coaching can be an easier entry point than therapy for people. Coaching is a partnership model where sometimes we just explain that you have everything inside of you to really be successful and then we can partner in a way that really works for the client. You know, some people just are so averse to therapy. You can start with coaching and then if you find that there needs to be therapeutic intervention, then we can refer. So we're just very excited, just having different entry points and different ways for people to get any of the help that they need.

Dr. Joy: Typically, like how long is someone working with a coach for ADHD?

Inger Shaye: You know, it does depend. It does vary wildly. Some people work with their coaches for years. I know I've been working with my coach for years. I start out with a three-month engagement because change takes a little bit of time but I do have clients that I've had for a few years and I have some clients that I've had for six or eight months. So it really does depend on what your goal is and what it is that you would like to achieve, and when you feel that you are ready to just move on and have a successful life. Obviously, I have people that come and they do check-ins. A lot of people will come and do check-ins a couple of times a year. It just really depends on how you can achieve your goal.

Dr. Joy: Got it. And please tell us where we can find you, Inger Shaye. What is your website, as well as any social media channels that you'd like to share?

Inger Shaye: My website is IngerShaye.com, I’m @IngerShaye on Twitter and I'm at @IngerShaye on Instagram. I have the Facebook group, Black Women with ADHD Executives & Entrepreneurs, that's a private group, and my page on Facebook is Black Women with ADHD.

Dr. Joy: Perfect, we will be sure to include all of that in the show notes. Thank you so much for sharing your expertise with us today.

Inger Shaye: Thank you so much for having me today.

Dr. Joy: After the break, we'll hear from René about her experiences being diagnosed with ADHD later in life.

[BREAK]

Dr. Joy: Thank you so much for joining us today, René.

René: Oh, thank you for having me, Dr. Joy. This is a real treat for me. I've been looking forward to getting a chance to sit down and talk to you. I love the show.

Dr. Joy: Thank you. I'm very excited to have you here to share more about your experiences. I know that something that is common is that black women are often diagnosed with ADHD much later in life, and I know that of course is a part of your experience. I'd love to hear you just talk a little bit about how you started Black Girl Lost Keys and what made you want to start it.

René: Absolutely. When I was seven or eight years old, they suggested to my mother that I had ADHD for the first time. They actually tested me without her permission and she was not down for that, told them they absolutely weren't gonna have a chance to drug up her kid and they dropped the subject. And then they did it again when I was 11. By the time I got to 25, I had no idea all of this was going on and I was on medical leave from work for a really nasty depression that I was in. And I just so happened to mention it in passing to my therapist, and she sent me to get evaluated, I found out I had ADHD and then I started looking to see what the black experience was and there was nothing, so that was frustrating.

I took a couple of years to kind of learn more about the condition and get down to what it was that I would need and what could help me. And as I kind of got the feel for it, I went back and said, well, let me try again. It's been a few years, maybe there's something. And there was still nothing, four years after my diagnosis in 2010. And so I said, well, if I'm hunting for it this hard even after all of this time, somebody needs to create the resource. I've always been a writer so that somebody seemed like it might as well be me. And here we are.

Dr. Joy: Right. Isn't that how a lot of meaningful things happen? Like, we are looking for something ourselves. And it is very similar to my origin story for Therapy for Black Girls, right? Like you recognize like, oh, this thing doesn't exist. I guess it has to be me, so kind of start it.

René: That’s it! Like we become the resource that we wish we had. And, you know, I think the biggest part of the journey for me was the isolation because you're fighting against the community and their mistrust of the ADHD diagnosis in the first place, so you can't really talk to them about the ADHD. And then you get into a lot of these neurodivergent spaces and they're not trying to hear anything about blackness. It's like, oh, well, we all have the same issue and race isn't an issue.

And it's always funny how people who don't have any racial issues want to tell you whether race is an issue or not so I’ve wanted to make sure that nobody felt as lonely as I felt. Because it's already enough just to take in the fact that it almost feels like, your whole life, you thought that you were one way and you find out that you were really another and so you have to relearn your identity. And then you've got these other identities within your identity so it's this whole journey, and it's not really a journey that's fun to take by yourself.

Dr. Joy: Mm hmm. I'd love to hear you say more about that, René, like the distrust and the lack of black experiences in the neurodiverse spaces.

René: Neurodiverse spaces are very male and very white, usually. A lot of the research that was performed to discover more about these conditions is very white male centered, as it is for so many other things. And then you combine that with the fact that the frontline treatment for ADHD is stimulant medication. And you take that to our community, you find that little black boys are more often diagnosed with ADHD and it starts to look like, why are they trying to jam these stimulants into our kids?

And unfortunately, as you know (I don't have to tell you) trauma and ADHD can look very similar and sometimes people don't know to look for the difference. Is the child traumatized, does the child have ADHD, or is it both? Because it can be. So there's this lack of understanding what the condition is, there's this lack of communication about whether or not medication is appropriate, there's all these issues that are usually issues for the community anyway. And then you dump this diagnosis that nobody understands on it, and it's just fuel to the fire.

Dr. Joy: René, I would love to hear about that time between the ages of seven and... how old did you say? 25 when you were diagnosed?

René: 25.

Dr. Joy: Yeah, so what's happening then? Like, how were you managing and how was ADHD showing up in your life?

René: ADHD was all over my life. Like, when I look back, I can say, oh, that's the reason the car was always getting towed. That's why I was always overdrawing my checking account. I was a mess, Dr. Joy. One time, I actually overdrew my account so badly that it took my whole paycheck–as a grown woman–it was so embarrassing. So I really struggled as a student with organization, with the social aspect. I had some trouble making friends. That kind of lessened as I went through puberty, but a lot of children have difficulty making friends. And then there was the mess. My locker, my desk, I never knew where anything was. I was always running into the project at the very last minute.

And then I got into college and it got even worse because you are totally in control of your time when you're in higher education. So it just progressively got worse until I couldn't even stay in school. Like I had to go to my mother and tell her, “This stress, it's going to kill me. I don't think this is for me. I need to leave this alone.” That was the end of school for me. So ADHD took a lot of things from me in that respect. I got them all back, though.

Dr. Joy: Yeah, that's the light at the end of the tunnel, that you were able to kind of figure out what was happening and then be able to do something about it.

René: Exactly. I'm so sorry...

Dr. Joy: The therapy dog is back?

René: Yes. He has something to say today.

Dr. Joy: Something that comes up quite often in the ADHD literature is this idea of masking. Are you familiar with that?

René: Absolutely.

Dr. Joy: Yeah, so masking is about like all of the different ways that you try to perform, as if ADHD is not like putting your life in shambles, right? You develop all of these strategies to kind of present as if nothing is going on. I’d love to hear like some of the things that you have learned about yourself that were actually masking behaviors.

René: One of the things, and I still do it, it's a bad habit that I'm trying to break... Like especially now when we're doing all these Zoom calls, I keep a mirror so I can watch my facial expressions. Because I feel like my facial expressions go all over the place sometimes. And then to boot, I never have been able to control them in the sense of like if I got an attitude, you're gonna know it, you're gonna see it on my face. So I try to keep an eye on those.

When I was a kid, you know, you’d find somebody who you can imitate and then you do that. Like let me raise or lower my voice, based on what I'm seeing maybe from the person on the TV or from this person who I think is popular. So you're really kind of parroting and as you learn more about yourself in the context of neurodiversity, you kind of have to unlearn that. Like it's okay, I don't have to hide the fact that my house is a bit of a mess. If you're coming over here, you know that I have ADHD, I have organization issues, and so you're going to have to just work with me here. Or not come over, because that's an option too.

Dr. Joy: Mm hmm. So now that you have been diagnosed, besides the mirror and letting people kind of know (or the people who already know you know this) are there other things that you've been able to do that you feel like has been able to kind of help you manage some of the symptoms?

René: Definitely. Like I've gotten... And this isn't even masking at this point; this is just good housekeeping to keep you in place. For a lot of years, I really fought the idea of keeping a calendar because it just didn't appeal to me. It seemed almost like corny to me for some reason. I don't know why. My brain does whatever it wants. But I really felt like I just don't want to do that, that feels very restricting and controlling, I don't want to do it. So I had to get into using a calendar because I really genuinely thought that I would be able to remember dates. And it occurred to me years later, like neurotypical people don't even do that. They write stuff down. Why did you think you needed to try to remember that? Or why did you think you that you were ever going to be able to, when you've clearly got this track record with time?

And I learned a lot about the value of time in general because, funny enough, my mother has ADHD–we found out a year and a half ago. So being raised by a person with ADHD too, if it wasn't for school or work, she showed up whenever she wanted to. And I thought that was the way that everybody was because that's how I was raised so I would do it and people would get frustrated with me. And I realized, oh, this is not how everybody does this. I need to learn how to do time.

So my life is “alarmed” because I have... they call it time blindness. I have a difficulty with estimating how much time something will take, estimating how much time has elapsed, estimating how long it will take to get somewhere, which was really a problem when you're trying to get to work in the morning. And you try to explain that to a boss... even after I had my diagnosis. You can try to explain to your boss that your disability causes you to not be able to get to places on time; they don't understand and they're not necessarily trying to hear that, even though it is something that should be accommodated.

Dr. Joy: Right. More from René after the break.

[BREAK]

Dr. Joy: So I think that that's really interesting, René; your mom also found out about her ADHD diagnosis later in life. I'd love to hear, if you feel comfortable sharing, what that conversation was like, both given that she was so opposed to you having the testing and any kind of treatment (it sounds like) when you were much younger, and then to now know that she also struggled with it.

René: Isn't it great? Because everybody always goes, oh my gosh, you convinced your mom! Dr. Joy, I did not convince my mom.

Dr. Joy: I'm sure that is not what the conversation was like.

René: I could be Black Girl Lost Keys all day long and I could inspire a whole bunch of other people, but my mom is still my mom and she's not listening to me when I talk about stuff like this. She's just like, “Okay, all right, I have ADHD. Yeah, sure, René.” She actually got started listening to another podcast about ADHD and she fell in love with the podcast and then started to recognize symptoms in herself. And the person who runs the podcast, Dr. Ari Tuckman, actually practices in our state. So I was like, “Oh, well, if you want to go get tested, Ma, why don't we just call him up?” And she was like, “Oh, my God, I can do that?” And I was like, well, yeah, he still practices. And she's like, “Oh, my God, I'm such a huge fan.” And I'm like, oh, okay. So it wasn't me, it was him!

Dr. Joy: Mm hmm. So she took your advice, at least to go and do the testing?

René: At least enough to go do the testing and then she made me come along to the test with her. And then, like so many people do, she gets into the room with the professional and starts telling him all kinds of stuff. Like, “Do you have an issue with being on time?” “No, I don't have an issue with being on time.” My mother is three hours late places sometimes. I'm like, you're not giving him the accurate story and if you don't give him the accurate story, he can't help you. Sometimes I feel like we feel like if we get in front of professionals and we give them the full scope of what's going on... It's like, they don't call the people in to cart you off to a facility unless that's absolutely necessary, you wouldn't be lucid. Like it’s okay. Are you a danger to yourself? Then you're fine. Just be honest.

Dr. Joy: Yeah. But I mean, I think that that shows up in a lot of ways. Like not just with ADHD evaluation, but I think even just in the mental health treatment spaces, and even just going to like your primary care doctor. There's something about the authority piece that I think brings out a lot of stuff for people that they don't even necessarily recognize.

René: It's the truth. It's like, if I give them this information, how are they going to use it against me? I need to be very careful about how I dole this information out until I know that this is someone who's trustworthy. I think it would behoove the community to be aware that sometimes when we do that, we're cutting ourselves off from the very help that we need. And it would help if the medical community understood that the mistrust isn't because we don't want help or that we're trying to offend them. You know, sometimes they take it very personally. And it's like we've been experimented on, we've had our children taken away by authority figures, we've had our homes invaded. We have to be careful–it's not an unfounded fear.

Dr. Joy: Absolutely. Yeah, and I think that's where the relationship building, like you talked about, comes in. So until mom was able to trust this person, then they can maybe become more honest. But you know, you're a complete stranger and I'm now expected to tell you some things that I've not publicly shared with anybody before. It is a very weird kind of a setup.

René: It is and then it's embarrassing for some of us. Like it was embarrassing to me that I was always bouncing my checking account or that I couldn't show up places on time or that I was always a mess. It made me feel very much like I was in arrested development. Like I just couldn’t get over to the adult side of things, like I was just stuck in this like “I'm too old to be a teenager but I'm not quite able to get into these behaviors that I see as adult behaviors.” And that's a really strange place to be in. You don't exactly trust yourself because you're making these mistakes that are causing major life issues for you.

Dr. Joy: Yes. You know, René, that is such a salient point, I think. So of course in my background as a college student, as a health professional, a part of what I did (at least at the University of Georgia) was ADHD evaluations. And so I often saw students come in, around your age, maybe a little younger when you were diagnosed, and it would be their first time being diagnosed with ADHD. And so one of the resources that I would frequently recommend that students often loved, was a book called You Mean I'm not Lazy, Stupid, or Crazy?!

And so I would love to hear from you, because I think what happened there, and I'm guessing some of this happened for you, too, is that now you are able to look back on your life and think about like, oh my gosh, this is why this thing was happening. And so a lot of times a later diagnosis of ADHD comes with a lot of identity and self-esteem issues. I’d love to hear you talk about any of that, that maybe came up for you.

René: I think as I started to learn and get my ADHD under control, it really does feel like you're peeling off these layers and revealing this person you didn't know existed. Like I always thought that I was really bad with money and I found out, like a lot of people with ADHD, I was underemployed. I was trying to do things that I couldn't necessarily do. So there I am trying to save money, you don't make enough money to save, you're constantly under water. Or how I felt like I couldn't get control of the way that I looked as far as styling and it was just a matter of getting organized and grouping it differently.

Like so much of what I saw myself as, in a negative aspect, were just symptoms: the lateness, the disorganization, the extreme emotions that can come sometimes. The anger or the frustration or someone says something to hurt your feelings and it's not just a “Hey, you hurt my feelings,” it's a huge meltdown, crying fit almost. So there was a lot of that where I was able to go, oh, now that I've got some perspective, how do you feel about yourself now? It's almost like when you see them in the movies, when they do makeovers and they cut your hair and you see that person in the mirror, and you're squinting to see if that’s you–that's how it feels. It just takes place over several years.

Dr. Joy: Mm hmm. I can imagine. I can imagine, yeah. I want to shift a little bit, René, to talk more about your work as an advocate and an educator and a community builder, like we've already talked about, and to really kind of talk about how your work maybe has changed during the pandemic. I would love to know if there are ways that you have seen ADHD show up differently for you now in the pandemic, and what kinds of things have you had to kind of adapt during this time?

René: Okay. So for me, it's funny. At the beginning of the pandemic, I was like, okay, I'm going to have this extra time so let me make sure I've got things to do. And then it finally occurred to me I run a business that's online; I don't go anywhere anyway. Like there’s no major life change for you. You were in the house then; you’re in the house now. But what has changed is that there are so many more people in need and so many more people who are discovering this for the first time. It makes me wonder if this pandemic has been the first time that people have really been able to sit with themselves and their emotions and look at their life.

Like it's easy to stay out of the house if the house is too messy and it frustrates you, but not when you can't leave. So then you're sitting there and you're trying to pull it together and you find that you can't. Why can't I take care of this mess? Why am I still late to work even though I'm on a Zoom call now and I don't have to leave the house? There are a lot of these things that regular life would allow us to mask or excuse away, that aren't there anymore.

Dr. Joy: And can you say more about like the additional need for resources? What have you seen change? More people reading your blog posts, or how have you been able to recognize the increase?

René: More people reading blog posts, more people reaching out with questions, more people signing up for coaching services or looking for a coach. Way more questions, especially people have a lot of questions about learning questions for their children. I work with adults, but of course you still want to funnel people to the resources so that they can get the help they need. And ADHD parents need support too because you're trying to support. And most likely, if you have ADHD, your child does.

You're as likely to inherit ADHD as you are to inherit eye color. So you've got maybe a mom who's finding out that her child has ADHD and it starts to sound familiar. So you've got a lot of newly diagnosed people, because they're finally realizing like this is not me having to be outside, this is not anything but something that I don't understand. Let me go find out. So there's a lot of newly diagnosed people, women especially.

Dr. Joy: Yeah. I mean, and we know... In Session 66, when Dr. Brown was here talking about ADHD, we know that it often looks very different in women and girls so it is often missed, which is why people don't often get diagnosed until later in life.

René: Absolutely. And too, for a lot of us, because we are outside the box thinkers, we’re able to fly under the radar. Because like for me, yeah, I didn't necessarily always have my homework done but I could go into class, barely pay attention, and still ace the test. So you can fly through a lot of things like that. And now we're finding with this pandemic, you can't do it the way that you used to do it. You're having to learn in a new way, you're having to attend work in a new way. And, you know, you're trying to set up your workspace, it's halfway set up, it's not comfortable, the clutter is everywhere. You need solutions.

Dr. Joy: I’d love to hear, René, how the black experience with ADHD has changed since you started Black Girl Lost Keys. Like what kinds of things have you noticed that have improved or been worse since you started the site?

René: You know, I think we're still at the beginning of the work to a certain extent. Like, I feel like my work has moved the needle, there's other people who are moving the needle as well, there's still so much room for the experience to be shared. And there's still so much cynicism when it comes to the diagnosis that I think there's more than enough work to be done still. We're not at the very beginning of the work but we still need to raise awareness, we still need to get the truth out about what the condition is. Like it's not a plot to medicate children; it's actually a tool to help them get where they need to go, if they have this condition.

Dr. Joy: Yeah. And you know, I think that that mistrust that we have related to like, “Oh, they're just trying to pump kids full of medication” is one that really has stuck around, it seems, a lot. And I think some of that is changing with different kinds of approaches and we know that there are non-stimulant medications too now that they allow kids to try. But I'm curious to hear your thoughts about what other things might help to reduce some of that cynicism related to ADHD in the community.

René: I think we need education and I think we need to know when we're talking about the symptoms that ADHD can result in for children, a lot of times people see it as a discipline problem. So it's like spank the child. As we know, we're learning that spanking children is not the thing to do to begin with but even so, if that's your mode of discipline and you're spanking the child and it's not producing the result, the assumption is often that the child is just obstinate. What child wants to be in trouble? You know what I mean?

Dr. Joy: Right.

René: I think we need to shift the way that we think about children. I think we could stand to remember that children are not little soldiers that we command. They’re people with thoughts and feelings and they express them in different ways. And sometimes I feel like, as a community, we don't let our children be people. They’re children, you know?

Dr. Joy: Mm hmm. Yeah, I think something else, like you mentioned earlier, so much of this research has been done just on white men and boys. I think that there are lots of black scholars and other scholars of color who are doing more research in this area and I think that that will go a long way too in us helping to recognize how ADHD does look different in our communities.

René: It does. And you know, sometimes... I don't know, I just feel like I think there is something to be said that little black boys are sometimes diagnosed with ADHD when they don't have it. It's difficult when you do have evidence that this is happening, but it's not happening the way... It's like we're getting pieces of the story; we're not getting the whole story. And then when you're talking about ADHD, when's the last time you heard them talking about little black girls with ADHD? We don't even enter the conversation.

Dr. Joy: Yeah. Often the attention is about how often black boys are over-diagnosed but black girls are a completely out of the conversation.

René: It's like we don't even exist. And because we don’t exist, we're not getting the help that we need at all. But we are getting plenty of criticism–that's another thing. Culturally, when we're late, when we're messy, we're reinforcing these stereotypes. You're being seen as someone who's intentionally being late, being slobbish, and playing into these things. So as a community, we're going to work harder to curtail that in you, and then you can't. How do you not feel like you've failed?

Dr. Joy: Mm hmm. You know, a lot of ADHD symptoms really kind of fly in the face of what it is supposed to mean to be a young black girl and a black woman in the world.

René: Yes. Like we’re supposed to be organized, we're supposed to manage the household, we're supposed to be able to do all these things. I’m divorced now, but as a wife, it was like, “Look, I'm not gonna take over and do everything while all you do is go to work and come home.” And then not only did I not want to, it turned out that was never going to be a fit for me, to have a relationship where that was expected.

And because black women, we’re sometimes a victim of how dynamic we are. Like we do everything. We do so much and because we do so much people don't often give us the space to not be able to do certain things. It's like, I can't do that and it's like, “Yes, you can, just try harder, you can do everything.” And it's like, well, this particular thing I can't do for you.

Dr. Joy: Yeah. I would love to know, René, if this has come up in your work. One of the things, and you've already talked about like how keeping a house organized and clean can be really difficult for someone with ADHD and I know that it's likely that something that people will rely on is bringing in outside help. Someone to help clean the house, someone to help organize. But I know from my own experience and working with black women, that is something that we will sometimes leave as a last resort. Like our moms and grand moms, it felt like, they could do it all and so there's often some shame around requiring additional help. Has that come up in conversations with your community?

René: Oh my god, yes! And like especially this week, because my grandmother has been in the hospital and I've been thinking about and talking about, you know... I grew up as her shadow so when I got into adulthood, I was like, okay, I need to run everything like my grandmother did. She ran a successful business, she worked a full-time job, she babysat my brother and I, did all the supply work, took care of the family. I almost killed myself from exhaustion, trying to be that woman. And I think so many of us, we live lives that are very different from the lives that our mothers and grandmothers lived and so we need tools that they didn't have. And probably they needed access to some of those tools, too.

So when we're talking about how my grandmother did it all, she did it all but I think she was frustrated. Like she didn't do it out of joy; she did it because nobody else was going to do it and there's frustration. I really try hard not to emulate that but of course the guilt’s still there. I told my mom once that I was looking for a housekeeper and she was like, “Well, I can help you with that.” And I'm like, no, I don't want you to help me with it. I want somebody to come over and do it. I'm not doing it and you're not doing it. We're taking labor away from us, not creating a shared labor project here. We're taking it away.

I have expressed to her like if I were to have a child, I want to have a nanny or a helper that comes in to help me with the overnights, because sleep is too important to me. If I don't get sleep, I'm done. And she laughed and I'm like, you laugh but you probably should have had a nanny too. You know, it's like, okay, yeah, you did it without one; I think you deserved the help. You deserved the help. So that's usually the response that I give and then they look a little taken aback like, oh, maybe I did deserve the help. Well, you were ashamed and nobody gave it to you.

Dr. Joy: Right, right. I love that your IG page is like a wealth of resources. One post that I loved was when you had a post that said, “If I had a life remote control that you could use, you would make use of the rewind button and apply that knowledge to your younger self.” And I would love to hear what message you would give to your younger self.

René: Go to the doctor; you’ve got ADHD! But really like all of these things, the frustration that I would feel with myself when I would be trying as hard as I could. Like academics, of course, like so many of us, that's a priority in our household. You’d better get in those books. “If you knew those books like you knew that song, you would do so much better.” And I wasn't even a bad student, but I just felt like the amount of effort that I was putting in wasn't giving me the result that I wanted. And working hard is important but there's such a thing as too hard. I wish I’d have known that I was working too hard. And that it wasn't that I needed to try harder; it was that I needed to try differently.

Dr. Joy: What a powerful message that would have been as a young person, right?

René: Yeah. I think it would have helped me to realize that I wasn't bad because that's how I felt. I felt like the teachers were frustrated with me, my parents were frustrated with me, it just felt like I didn't fit in anywhere. That I couldn't get it right. Like other people were able to get it right and I couldn't, so that must mean whatever negative conclusion you want to come to. And that's the part that people are missing when their children are being diagnosed and we're going, “Nah, I don't believe that.” We’re trying to avoid a label–you're still going to get one. Just like the book said: you mean I’m not lazy, crazy or stupid? That's the label your child's gonna get–lazy, crazy or stupid.

Dr. Joy: Right, and it may be an internal label, it may not even be from someone else.

René: That's it. That right there. And the label of ADHD gives them access to help and support. Those other labels don't do anything but shame them and cut them off from support, make them feel like they're not even worthy of support.

Dr. Joy: Mm hmm. What have been some of your favorite resources, René, besides your blog of course? What are some other resources that you find yourself recommending frequently or really enjoying?

René: Ooh, okay. There's Healthy ADHD, that's a blog that a friend of mine runs. She is very, very thorough. She does a lot of stuff with ADHD moms, it's fantastic. Cameron Gott is an ADHD coach, he does a podcast called Translating ADHD, it’s a phenomenal resource. She's going to be on this show today, Inger Shaye Colzie who is also a friend of mine, fantastic ADHD coach. I tell her all the time, “You help me tuck my brain back in when it starts to come loose.” So there's a lot of good resources out there. The ADHD Good Life, it's a podcast run by my buddy Sandra and she does a fantastic job too. Those are the places I go when I need to learn something new.

Dr. Joy: Perfect. Tell us where we can find you. What's your website as well as where we can connect with you on social media?

René: It's BlackGirlLostKeys.com. You can find me on any social media under @blackgirllostkeys. If you are trying to find me on Twitter, they won't let me have all my characters so it’s @blkgirllostkeys as the handle. And if you google Black Girl Lost Keys, it'll bring up anything that's related to me.

Dr. Joy: Perfect. Well, thank you so much for sharing with us today, René. I appreciate it.

René: Thank you so much for your time. I appreciate it. This was really an honor. Thank you very much, Dr. Joy.

Dr. Joy: Thank you. I'm so glad Inger Shaye and René were able to join us for today's conversation. To learn more about their work or the resources that they shared, visit the show notes at TherapyForBlackGirls.com/session197. And please text two sisters right now and tell them to check out the episode. Don't forget that if you're looking for a therapist in your area, you can check out our therapist directory at TherapyForBlackGirls.com/directory.

And if you want to continue digging into this topic or just be in community with other sisters, come on over and join us in the Sister Circle. It's our cozy corner of the internet designed just for black women. You can join us at Community.TherapyForBlackGirls.com. Thank y’all so much for joining me again this week. I look forward to continuing this conversation with you all, real soon. Take good care.