Latest / The Original Self Podcast / ADHD in Midlife: What It Takes to Look Fine | Jen Walters Interview

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ADHD in Midlife: What It Takes to Look Fine | Jen Walters Interview · The Original Self Podcast

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stare at the computer for hours because I could
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not formulate in my head the perfect first sentence.
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Hey everyone, it's Evet. In the last episode,
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I explored how ADHD in females is recognized
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later than it is in boys. The effort hidden by
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coping systems established very young in life,
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and emerging research on hormonal and reproduction
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health for women with ADHD. Today, I am with
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Jen Walters, aka Wicked Smatt, that's what we
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call her, because she is Wicked Smatt. And we
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are going to talk about ADHD and the cost of
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appearing fine. amongst other things. So I'm
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welcoming Jen here, and how you doing today?
1:11
Good morning. This morning was a rough morning,
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I'm not going to lie. But I'm feeling better
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and I'm ready to get into whatever topics you
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bring up. I've been pairing myself to be open
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about my experiences because for so long I've
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had to keep it hidden. And this is an opportunity
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for me to share my experiences that may benefit
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someone else who's listening, but in a way, selfishly
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benefit myself in some type of unburdening. So
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that's my mindset this morning. That's wonderful,
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right? Because obviously you're not trying to
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say this is every person with ADHD. This is your
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experience with ADHD. So I'm kind of interested
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in where your story begins, what everyday life
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was like before you had a way of understanding
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what was happening. So my questions are along
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that line, and you're going to take us wherever
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you're going to take us with your answers, and
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we'll go from there, okay? Great. All right,
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so when you were a wee girl, what did school
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and everyday life feel like from the inside?
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And what did adults think that they were seeing
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in you? Very interesting question. I want to,
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I think this is an important detail. I went to
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Catholic school and everything I think I experienced
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was influenced by that, obviously, and perhaps
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even exacerbated by it. I appreciate my Catholic
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education, but at the same time, I recognize
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some of the characterizations that were made
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specifically by the nuns. Old Guard nuns has
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colored the way I see myself, and I'm still analyzing
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that and unpacking it. So I never felt right.
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I never felt right in my body, in my instincts,
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in my responses, in my behavior. Just my existence
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was wrong. Is right another way of saying not
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normal? Not normal, not comfortable. I mean comfortable.
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I never felt comfortable in my own skin or my
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place in this world or even existing in this
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world. I remember a few years ago speaking with
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my sister. I was, I can't remember if I had been
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diagnosed at that point, but I told her I am
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so tired of having to apologize for my existence
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in this world. And she responded with love and
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empathy, of course, but I could tell in the tone
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of her voice that that concept was completely
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foreign to her. So I am always interested in
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having those types of conversations when I meet
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another person, specifically a woman, even more
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specifically a late diagnosed woman, if they
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had that feeling too, or if that concept is also
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completely foreign to them? Sure, sure. I would
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imagine finding people that have similar experiences
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validates that you're not wrong, you're not broken,
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you're not so different. That's what I think
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it would do for me. That's what I think. It is
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an answer to a question. A lifelong question.
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A lifelong question. I am the type of person
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who, whatever the question may be, I'm not comfortable
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until I have the answer. And I will maybe not
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have that question at the forefront of my mind
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every second of every day, but it is always in
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there. So when I get a new piece of evidence,
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piece of data, anecdotal data, scientific data.
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Better. Right. then I'm one step closer to answering
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the question, the more comfortable I become with
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my existence in this world. Like the acceptance
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of it? Maybe. I'm not sure if I'm making sense.
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Yes, you are, unless I'm off when I said acceptance.
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No, no, but I've learned to double check, triple
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check, quadruple check myself when I'm having
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conversations. I do this at work. My job is to
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help people understand software system, a particular
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software system. And when I'm explaining or reviewing
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with different clients, sometimes there's dead
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silence. Sure. And I never know if it's because
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the other person feels Zoom meeting shy, not
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wanting to sound like they're going to ask a
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stupid question, or if what I'm saying is completely
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foreign to them and they don't understand me
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because That is my life experience, not being
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understood. You are very sensitive and so you
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do pick up on things like that as well, right?
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Yes. I know our friend Angie, she starts staring
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at your lips when she is gone, like she didn't
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understand something or something you said made
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her think of something else and she's just, she
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stares at your lips and that's when I know she's
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gone. So you can always see that on Zoom, right?
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Right. was thinking that the whole reason I did
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this is I have a lot of friends and family members
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with ADHD and you and I have talked about spectrum
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and all this stuff and you know, I I know that
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people that truly have a diagnosis of ADHD They're
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not just squirrel, you know, they are not that
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and I understand that I however am a little squirrely.
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Okay, I will look at you know somebody's footwear
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in school when I was in school, and I could not
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figure out why they wore socks with teevahs.
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And I would stare at it and realize that for
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the last five minutes, I am gone. That is my
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lack of attention. But I understand as a Gen
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Xer, we are Gen X. That is why I'm very interested
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in it. We are raised by Boomer parents mostly,
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and they tended to not speak about feelings and
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emotional regulation, do as I tell you, and that's
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that. We don't talk about feelings, right? And
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I think that when you are having this difficulty
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growing up, but we're the generation of, you
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know, suck it up, buttercup, you're fine, right?
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That is our generation. Deal with it. When you
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get this diagnosis late in life, in my brain,
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I just think it explains a lot of stuff, a lot
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of stuff that you went through, okay? What kind
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of systems did you put in place to make it through
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the school day, to make it through whatever task
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you needed to do? I had no systems as a child.
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I was survival mode all the time. Quite literally,
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live another day. Do whatever I need to do to
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not incur the wrath. of my mother incur the wrath
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of the meaner nuns at school. So literally survival
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mode. Literally survival mode. Yeah. And what's
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interesting is when I speak about that time in
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my life and having these experiences and feelings
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at such a young age, very often I'm not believed.
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Because how in the world could a five -year -old,
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a six -year -old, seven -year -old, so on and
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so forth, have such heavy topics to deal with?
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I didn't know the heaviness. I just knew that
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was my life. I know you very well, and I do know
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a lot of the backstory. But it seems to me that
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ADHD, even though you didn't know that you had
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that, completely took a backseat. to surviving.
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In a sense, we didn't talk about that in my family.
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It wasn't part of the even cultural pop psychology
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things that were spoken about either, but it
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was there. It was there in the fact that I scored
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always in the top two percentile of students
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nationwide. And then going from grade school
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to high school, I went to Catholic high school
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and the school that I high school I went to had
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an entrance exam. And depending on how you performed,
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you were placed in either like normal track,
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advanced track, or even below normal track. And
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I tested the only kid from my particular grade
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school going to that school was the only kid
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who tested all advanced in all subjects. And
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yet when I went to high school, I struggled in
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most of my classes except for français, because
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that was my super interest. That's been my lifelong
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thing that I'm interested in. Could you say that
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in French? I'm not sure. Mon intérêt super. All
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I understood was super. So the reaction, there
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was a very specific reaction from my father who,
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when we were talking about my performance in
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my algebra class, Our teacher, we were all performing
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so poorly in the advanced class that my teacher
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held a conference with all of the kids in that
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class and their parents. And she said, this advanced
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level may not be for your child. So I encourage
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you to take a look at that and possibly let them,
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they call it drop down. to the normal track,
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my father's response, which he does not remember
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because I did have a conversation with him about
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this quite recently. He does not remember that
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conference and he does not remember saying this.
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He said, you tested at this level. That means
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you can do the work. You need to do the work.
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You need to perform at this level. So even though
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you tested at that, you had trouble. doing everything
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besides francais and You you know, I'm thinking
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about you're a teenager your hormones, you know,
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you're going through puberty and I think we have
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a lot of answers about why that got harder for
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you You know, so I I just think that's interesting,
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but you make it through high school I know that
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you went to college as you got older Do you remember?
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building systems to help keep your life working?
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And then I have a follow -up question for that.
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Go ahead. learned in grade school just by that
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was the practice that they picked up. But that
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was the first time the grad student that led
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that sort of program that I was mandatory for
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me to take said to me, I'm doing a thesis on
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XYZ and I would love to interview you to, I guess,
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gather data for whatever her thesis was. In that
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interview, we specifically talked about my problem
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writing papers. I knew how to write papers. I
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wasn't, I'm not stupid, but. Hence, wicked smart.
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All right, go on. But I would stare at the computer
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for hours because I could not formulate in my
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head the perfect first sentence. And it had to
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be perfect. It had to be perfect. And she said,
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oh, so you're a perfectionist. And I said, what
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are you talking about? Nothing I do is perfect.
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I did not understand what that meant. Her advice
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was what we would now refer to as do a data dump.
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Just start writing and then organize the thoughts.
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So I did implement that. Things got better. It
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really wasn't until I was diagnosed at 50 and
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I hired an ADHD life coach where I learned about
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proper systems. So think about that. 50 years
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of living life with really no real systems. Did
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I have coping mechanisms? Yes. But we can't call
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them systems. I would not classify them as systems.
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So here's one system that I learned about, very
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effective. I have a control center, usually near
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the front door of whatever home or apartment
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I'm living in, consists of some sort of metallic
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plate on the wall where I can have magnetic hooks
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and shelves and things like that. or pegboard
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type things because that's where my keys go,
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that's where the mail goes, that's where the
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car registration that I have to renew goes. Anything
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that is important in the structure of the world,
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like you cannot drive your car unless there is
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a registration, that at any given moment, could
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be important to me or not important to me. And
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maybe important isn't the right word, but more
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like right in front of my face that I know I
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cannot count on that. So I have to have a memory
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bank of sorts that is physical and outside of
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my body, outside of my brain. To have a physical
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place for those things, but also a visual on
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a constant basis going in and out of my house
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every time I see this is there, that's there.
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Oh, I have to deal with that. I have to deal
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with that. That's one thing. That's one system.
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When I don't have that, my life returns to that
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just live another day type of survival, coping
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mechanisms. That's very interesting because familiarity
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is sometimes comfort, even though I would imagine
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live for another day is chaotic and scary. Extremely
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chaotic, very scary. I even recent as recently
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as I guess it's almost a year and a half ago,
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reached a point where I really was not sure I
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would be able to live another day. What really
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helped is getting a job. This will never go away.
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And it actually, when you think about it, will
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never get better. It is not, whether you want
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to call it a condition, a brain type, whatever
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the nomenclature, it isn't like a cancer tumor.
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You apply chemotherapy to it and it shrinks and
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you can hopefully beat it. This is not something
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that you will ever beat. In my opinion, in my
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experience, I will maybe be able to manage it
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better on some days than on others. And that
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might be because I'm so survival mode that I
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think in those terms. But I don't say that in
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a pessimistic, fatalistic, defeated kind of way.
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But that's how I feel about it. Right. And I
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get that. And it is in your experience. And like
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we talked about before, there is trauma there.
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And I know the background. And so, of course,
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that is going to affect not just your day -to
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-day life, it's gonna affect you emotionally.
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And I get that. And I also understand that emotional
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regulation is part of ADHD. Okay, so I was going
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to ask you the systems that you have built. What
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do they cost you? But I mean, I already kind
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of heard some of it. Are there any systems that
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you've implemented that you paid the cost of
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in a positive way. I know that you, like the
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system that you just talked about, your command
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center, okay? That's a positive system. Oh, I
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understand what you're saying now. Yes, it is
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a positive system. I get what you're saying now.
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I, every morning I have anywhere from four to
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six alarms. so that I can wake up and get out
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of bed. These alarms are on my phone, on my iPad,
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on my Alexa, and they're timed about 15 minutes
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apart, so every morning I'm barraged with buzzers,
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beepers, because it cannot be a gentle awakening
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for me. I have to have that emergency. It has
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to be all hands on deck. Think about the old
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World War II movies with the U -boats and the
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sirens that go off. It is that level, but it's
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every day just to get up for work. That would
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put me in a very, very pissed off mood. I just
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want you to know that, okay? But it works for
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you. is what you're saying. And so that's the
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cost. Is it gentle? Is it the best for me? I
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don't think it's the best for any human to have
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to wake up that way. So on the weekends, if I
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don't have anything planned, Saturday is all
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day sleep or quite a huge part of the day committed
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to sleep. Sundays are maybe I'll be quote unquote
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productive by doing a few loads of laundry. But
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my energy during the week is mostly spent on
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being able to do my job. And at the end of my
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day, I don't have the energy. Because you give
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it all. I give it all. In parts of the ADHD world,
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we call that, how many spoons do you have for
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the day? And how many spoons is that activity
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going to take? Do you have any spoons at the
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end of the day left over for whatever? So you
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give up your interests and hobbies. You give
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up going out with friends. You give up really
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anything that does not serve your literal survival
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living another day. In your experience. In my
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experience. What led you to even wondering could
22:36
I possibly have attention deficit hyperactivity
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disorder? So my brother was diagnosed many years
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before I was and I don't remember at which age
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maybe in his 30s and you hear stories of Women
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not being diagnosed until they take their children
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in to get diagnosed, and then they realize, oh,
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this is me. That's not my experience. My brother
23:07
was diagnosed. And still in my head, I thought,
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that is him. It has nothing to do with me. When
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I moved out of California and I moved to another
23:20
town, I had a doctor there. who turned out to
23:25
be excellent, and it was that doctor who suggested
23:31
to me, I think you might have ADHD. Why don't
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we get you tested? And yet it took another about
23:38
six and a half years, even with a doctor's help,
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a doctor who believed in ADHD, who believed in
23:46
me, who just couldn't shake that what he was
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His instinct about me having ADHD was right that
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he persisted, which is unusual. It's an unusual
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thing to have a doctor believe you and a doctor
24:05
persist on your behalf, but he did. I think it's
24:08
unusual as well for you only because you present
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as so capable and so smart. Like, you know, I
24:21
know ADHD kids. I have a friend that has ADHD.
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He was never diagnosed until just like you, much
24:30
later in life. They said he was stupid, that
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he needed to try harder, sit down and focus,
24:37
right? That was his experience. Now, your brain
24:40
is hyper, your body, you don't present hyper.
24:44
And so If someone said to you, try harder, one,
24:49
I think you're probably saying that to yourself,
24:51
okay? And much worse. And much worse. But I know
24:55
that you don't present like that. And so to hear
25:00
that a doctor saw it, but it still took six years
25:05
to diagnose you is mind -blowing in my opinion.
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And I know you moved. I know all that stuff.
25:14
It is. That is like one of the reasons why I
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wanted to do this because it just seems so difficult
25:21
for the medical community to figure out that
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a female is suffering. Kind of pisses me off.
25:28
I'm sorry. Yes. Kind of pisses me off. I'm sorry.
25:31
Well, we've talked about this before. When I
25:33
got my diagnosis, yes, there was a sense of relief,
25:39
a sense of, oh, that's why. For a very long time
25:47
rage and I don't mean oh that just kind of chaps
25:51
my hide I mean rage I would imagine yeah and
25:57
Such deep anger towards my parents my teachers
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of course my doctors my lifelong every doctor
26:05
along the way Why? Did no one give a fuck yeah
26:11
about me That's certainly what it feels like,
26:15
right? That is. It is. Yeah, I would imagine
26:19
that. I mean, I watched my little nephew in kindergarten.
26:25
They were like, we're going to test him. And
26:29
he had an ADHD coach all the way up to high school.
26:35
And then he had some more scaffolding. He learned
26:38
how to do this stuff. And it's like the advantage
26:41
that he had. because someone said, oh, something's
26:45
going on there. Let's try and help this, right?
26:49
It's a beautiful thing. And I know we can't go
26:51
backwards, right? We're right here. And I love
26:55
that you are so invested in understanding this
27:00
disorder that you have. You know you can't, there's
27:03
not a cure for it, but there are things you can
27:07
do to help yourself, right? And that's what I
27:09
appreciate, right? Yes. I am still learning.
27:14
Sure. I feel that I will be learning for the
27:18
rest of my life. But I think that can be said
27:20
for so many things, right? But am I in a better
27:25
place than I was 10 years ago? Yes and no. But
27:32
mostly I think yes in terms of better understanding
27:37
myself. And that's still difficult. But I am
27:44
better at maybe reframing some of the thoughts
27:48
that I have. And instead of battling my brain
27:54
type, I now try to work with my brain type instead
27:59
of trying to force myself to do things, execute
28:03
things in a way that I've been told is the way
28:09
you must do things. Now I try to adapt them to
28:14
work with my brain type. And that has made things
28:19
easier. And I have gotten very good at in a work
28:26
setting and in social settings. When I'm doing
28:30
something in a certain way and I'm questioned
28:33
about it, why are you doing it that way? Why
28:36
did you put this there? Why do you have this
28:38
on your countertop? Or why do you da -da -da
28:41
-da? I am so much better at saying, this is what
28:45
works for my brain type. Yeah, instead of just
28:48
taking the judgment, right? And then feeling
28:50
bad about yourself. You're like, no, no, no.
28:51
I do this because. Yes. And then from there,
28:55
if the person that I'm interacting with gets
28:58
it, great. If you want to have a conversation
29:01
about it, great. And if they don't, there's the
29:04
end of the line. I don't need to interact with
29:07
you anymore about this. I do not need to explain
29:10
myself anymore to you. Right. Right. But if you
29:15
want to have that kind of conversation, I'm up
29:17
for it. Good. I mean, here's the thing. The people
29:21
that know you and love you, the minute you told
29:24
me that you had ADHD diagnosis, I went on a deep
29:29
dive. I want to learn. You know, I still ask
29:33
you questions. You know, I think we were just
29:35
talking about this earlier. When you said to
29:38
me, we were cleaning out your mother's house
29:41
because she needed to move and I asked you a
29:44
question and you were trying to answer it and
29:48
you were starting and stopping and starting and
29:50
stopping and because of who I am and you know,
29:53
I'll run over people, right? Like I just keep
29:56
talking faster. I don't know. I don't know what
29:58
my deal is. Anyway, it's just me. you made me
30:02
stop and you said to me, when you ask me a question,
30:07
I've got 30 possibilities, like just popping
30:11
into my head and I have to narrow them down into
30:16
a cohesive answer. And of course that made me
30:20
think of like cartoons with like, you know, the
30:22
word bubbles over their heads, right? And you
30:25
know, them popping as you were like narrowing
30:27
it down into a funnel. That's what I saw, you
30:30
know, in my head. but it made so much sense to
30:34
me that why maybe people that I know with ADHD
30:38
actually don't answer when you ask them a question
30:42
or have so much trouble giving you a narrowed
30:48
cohesive answer. And so I try to remember that
30:53
when I'm speaking to someone with ADHD to not
30:56
run over them. I'm not always successful, but
31:00
I try, right? But it was that kind of information
31:03
that I think when you are honest and not ashamed,
31:09
embarrassed, fear of judgment, whatever happens
31:15
in somebody's brain that has some kind of divergence,
31:21
I think it's really important to give them space
31:24
is what I'm trying to say in a very long -winded
31:27
way, right? Look it up. Well, look it up. There's
31:33
still I have family members who still refuse
31:38
from my perspective to either accept or understand
31:43
that ADHD is a real thing. It causes me to struggle
31:49
and there's no grace there. And I compare that
31:56
to quite a large group of what I call and consider
32:02
my core group of friends who've been my friend,
32:08
who've chosen to keep me in their lives for 40
32:15
years, 30 years, 20 years, very long -term friendships.
32:21
And the thing that I'm grateful for every day
32:24
is what I now see and consider continual grace
32:32
that they have given me. Not to make myself sound
32:37
like a complete jerk, I mean that before we knew
32:43
all of these sort of things that make it difficult
32:48
for me to deal with certain situations, let's
32:50
say a social situation, people think I'm life
32:52
of the party and they find it hard to believe
32:56
that I have sometimes in certain situations,
33:00
almost crippling social anxiety. Which again
33:03
is being studied over and over again because
33:09
so many ADHD people have crippling anxiety. Just
33:12
want to throw that out there. And so how many
33:15
times was I late to the happy hour, late to the
33:21
birthday party, late to the dinner, late to these
33:24
important life things that people interpret lateness
33:30
with, they do not care about my time, so they
33:35
don't care about me. And so when I talk about
33:38
grace, I mean, even though I had that behavior,
33:43
and still to do today, to some extent, but I
33:47
think it's much, much better because I understand
33:49
it better, that they have given me grace for
33:56
that quote unquote character flaw. or what's
34:00
looked upon as a character flaw, and still wanted
34:04
me to be a part of their life. The only thing
34:10
I can say is that I'm always so grateful for
34:13
that because that has given me the space and
34:20
the time to figure things out and still receive
34:26
love and acceptance. Yeah, we know you do that
34:32
thing, Jen, but we love you. But we also understand
34:35
it now. Well, we understand it now, but not all
34:38
those years. And we know in our friend group,
34:44
the famous or infamous dinner party where I broke
34:52
and possibly for the first time ever in my life
34:56
explained what I was going through and I didn't
35:01
understand it. I think we were in our 30s. So
35:03
this is a long time before I was diagnosed. But
35:06
I categorized it as social anxiety, which it
35:09
is, but it wasn't just that. I'm telling you
35:13
from that moment on, the difference in the level
35:19
of understanding from my friends and again, grace
35:22
was monumental. And it helped facilitate just,
35:30
it was that extra bit of, oh, they had this information
35:35
and now they understood me a little bit better.
35:39
And so they wouldn't get angry with me if I were
35:42
late. They would understand she's having a difficult
35:45
time. It's the three is company. I always say
35:48
that, right? If it was just communicated, there
35:53
would never have been a show. called Three is
35:55
Company because that show was completely based
35:58
on misunderstanding and lack of information.
36:02
And so when you walked into a dinner party, I
36:05
don't even know, two hours late? I don't think
36:08
that's an exaggeration. No, it is not. And the
36:10
hostess was fuming. She had smoke coming out
36:13
of her ears. And the hostess is not someone I
36:15
knew very well at all. She's kind of a bitch
36:17
anyway. But the whole point is, is the vulnerability.
36:23
and the authenticity that you showed sitting
36:27
down in a group of people that you didn't know
36:30
everybody. No, I did not. And said your truth.
36:35
I don't know why I'm like this, but I have a
36:38
lot of anxiety and it's very difficult for me
36:43
to get to some place that I need to be on time
36:45
and all this stuff happens. And there was dead
36:48
silence as you spoke because I think Every single
36:53
person at that table knew that you were bearing
36:57
your soul. No one could continue to be mad. Everyone
37:03
had empathy, but most of what we had was understanding
37:09
what somebody that we loved was going through.
37:13
And I think that changed it. a lot of stuff in
37:18
your friend group. I think it really, really
37:21
did. And then once you were honest with us, these
37:24
people, I mean, half those girls I didn't know
37:26
either, but. And we've never heard from again.
37:31
Anyways, but the whole point is, is that it allowed
37:35
you to be more honest with the rest of your friend
37:38
group, with your family. And that, that was,
37:41
it was a huge breakthrough. And even though you
37:43
weren't diagnosed for 20 something years later,
37:47
It did. That is a pivotal moment in my life where
37:51
things changed. I didn't pinpoint the exact thing,
37:57
but I was at least on the dartboard. I agree.
38:00
I at least landed on the dartboard. You weren't
38:03
Ted Lasso, but you were playing. I love that
38:06
show. Me, too. I like it. I don't know about
38:08
the new season, though. I'm trying. I'm trying.
38:10
You talked a little bit about sleep and your
38:12
5 ,000 alarm. I already know that. sleep is an
38:15
issue for you. And I know people say like, oh,
38:18
sleep hygiene. And you heard in the previous
38:21
episode about the melatonin release coming much
38:26
later. Well, they said 90 minutes. I think it's
38:28
way later than that in a lot of people with ADHD.
38:32
My question, what have you figured out besides
38:35
the alarms? What have you figured out when you
38:38
know you can't sleep and you're raring to go
38:41
at midnight? How do you deal with it? How do
38:43
you cope? Such a good question. And actually,
38:46
I'm going through that currently. Before I answer,
38:50
I want to say the information in your last podcast
38:54
where you spoke about that is nearly 100 % my
38:59
experience. The information that Sylvina shared
39:04
with you is 100 % my experience. It is when I,
39:10
my circadian rhythm, or you would probably know
39:13
the clinical terms better than I, but when I
39:18
am getting my second wind at 10, 1030 at night,
39:23
and I'm up until 1, 2 a .m., even though I have
39:27
to get up very early in the morning, there is
39:30
such serenity in no demands. of me, of my time.
39:37
It's freedom. It's freedom that I know I never
39:41
had as even a child. My school career, my after
39:46
-college jobs and eventual career. It's the only
39:50
time that I have where I feel I can even relax
39:55
just a little. So the doctor that helped me get
40:00
diagnosed with ADHD also helped me with a lot
40:04
of other medical questions and situations that
40:11
made my life so much better because he listened
40:14
and we got to the bottom of it. We didn't just
40:19
treat the symptoms, we looked for the cause,
40:23
the root cause. One of the things that I had
40:27
done was a sleep study. I was diagnosed with
40:30
sleep apnea, but I don't just have sleep apnea.
40:35
I also have restless leg syndrome, which despite
40:39
its name doesn't just mean you tap your leg.
40:42
It's a whole body restlessness. It feels sometimes
40:49
even I have little twitches and spasms. So I
40:53
was on medication for that for a very long time.
40:55
Over the years, I stopped taking that medication.
40:58
Why? Because I thought, well, you know, I can
41:01
put up with a little herky -jerky during the
41:05
day. Who cares? Why do I need to be on meds for
41:08
it? A few days ago, I was at a doctor's appointment.
41:14
I had some concerns. I've had a few recent health
41:20
issues and major surgery back in May, and I'm
41:25
exhausted all the time. While that is completely
41:29
reasonable for having gone through the things
41:33
that I've gone through in this past year, it
41:36
was worrying me because I don't think I've ever
41:39
felt this physically weak and exhausted. And
41:46
so I thought, really, there's got to be something
41:48
wrong and I need to check it out. So I did have
41:53
that conversation with my doctor here and I will
41:57
say I have Hit the jackpot with my previous doctor
42:02
When I lived out of state and my doctor here,
42:05
they are just excellent and he ordered a new
42:10
sleep steady for me because Since I was first
42:16
diagnosed with sleep apnea. I went through menopause
42:20
in my early 40s and over time just because you
42:26
have that diagnosis of sleep apnea, it could
42:29
be that as you get older and hormonal changes
42:32
and this and that and other factors, maybe the
42:35
nature of your sleep apnea and or the treatment
42:39
of your sleep apnea changes too. So if you're
42:42
not really keeping up with it and you might be
42:46
doing the things you did that worked 10 years
42:48
ago and they no longer work. So I'm having a
42:53
new sleep study done. And it's not that I didn't
42:57
know this, but he said something to me that I
43:01
just didn't put two and two together, which is
43:04
the restless leg syndrome, that while my nighttime
43:13
movement and body spasms may not fully be waking
43:18
me up so that I know, oh, I'm up now, it is disturbing
43:23
my sleep and I am not reaching that deeper level
43:29
of sleep that affords you the feeling of being
43:37
well rested. I am not getting restful sleep.
43:42
I believe that researchers are investigating
43:45
sleep apnea and restless leg with ADHD. My life
43:51
and many people with ADHD, women, with ADHD in
43:56
particular, our lives are then diagrammed. And
43:59
it's not just three circles that overlap. It's
44:02
like sometimes 15, 20. Interconnected. All overlapping
44:08
and interconnected. And I think you mentioned
44:11
this in your last podcast, just because you have
44:14
this XYZ doesn't mean you have this thing over
44:18
here. However, the overlap. in the infancy stage
44:25
of understanding this. Especially in this country.
44:28
It does seem to me that other countries, especially...
44:33
Nordic? Nordic. They seem to be really the forerunners
44:39
of finding this research and finding the information.
44:45
Dare I say just living in general, being a human
44:49
and living and your best... Living your best
44:53
life like health wise education wise mental health
44:58
physical health I mean, yeah, I look to that.
45:01
I look to research from that area Quite off and
45:06
it's women -led. So let's just you know, understand
45:09
that I get the freedom both you and Sylvina said
45:12
the exact same phrase anything that you do to
45:18
allow yourself, okay, I'm awake and this is what
45:22
I'm going to do and I'm not going to freak out
45:24
about only getting a few hours of sleep. What
45:27
do you do? What's the mental? Sometimes I ride
45:31
the wave and I try to be productive. Sometimes
45:35
I make things worse by binge watching. some stupid
45:42
show that I know every minute that I spend doing
45:45
it. It's less time sleeping. What I strive to
45:47
do is there are certain recordings of music that
45:53
in my experience works for me to help occupy
45:57
my brain in a way that the noise gets settled
46:03
and just then my body can do what it's naturally
46:09
supposed to do. which is do all the shutdown
46:13
things at the night. What about music? Does that
46:16
help with sleep at all? Certain Mozart pieces.
46:21
I mean, there's actual music. U2's Unforgettable
46:25
Fire album. Is there a bullhorn in that? That
46:29
was 15 to 20 years pre -bullhorn. But the track
46:35
list does something for my brain. What I attribute
46:41
that to is I process music in a different way.
46:45
I cannot explain it because I may not fully understand
46:50
it. I just know that I do. So when I find music
46:55
that has a certain physical effect on me, I file
46:59
that away. So if I need to be productive, I listen
47:03
to whatever if I need to fall asleep. When I
47:07
do these things, I am much more successful at
47:11
getting to bed at a normal hour and getting the
47:17
amount of sleep that allows me to be at least
47:20
baseline functional the next day. All right.
47:22
So let's talk about health and midlife, us girls
47:26
in our 50s. You lived with endometriosis for
47:31
many years. Tell me, how does that experience
47:35
affect your daily life? And how long did it take
47:38
for anyone to look at the whole picture, meaning
47:40
ADHD, endometriosis, or even if they have looked
47:45
at that whole picture for you? They have not
47:47
looked at that whole picture for me, but it is
47:49
something I'm aware of because, you know, I read.
47:52
Because you read? Yeah. From my very first cycle,
47:56
the level of painful cycles, I mean, it was just
48:00
off the charts. and never dealt with. When I
48:05
finally think I might have been 18, was told
48:08
some women just have more pain. When it got to
48:11
the point where something was very wrong, meaning
48:14
I had hard, my stomach was hard. What age is
48:18
this? 26, 27, maybe 27. She did the palpitations
48:25
that they do and she said, I don't know what
48:27
this is, but it's coming out. And they did do
48:31
the internal sonograms and all of that. And they
48:34
saw a mass. And she's like, I don't know what
48:36
this is, but it's coming out. What they removed
48:39
from my body to the path lab mid -surgery, that
48:43
it was endometriosis. It was a mass of endometriosis.
48:47
It was a 14 centimeter mass. And then I had what
48:51
they call gunpowder residue. They're basically
48:54
like black splatter spots. And that's endometriosis.
48:57
The surgeon who was very well known and told
49:01
my father she had never seen a case like that.
49:05
Did they say POI, primary ovarian insufficiency?
49:09
That terminology wasn't used. But I worked at
49:13
a bookstore at the time and I had the ability
49:15
to order books. So I did my own research and
49:18
I got a list of these books about endometriosis
49:21
and I ordered, I don't know, you know, the first
49:24
chapters usually deal with what are the symptoms?
49:26
Yeah. every single one. Sure. Check, check, check.
49:30
Check, check, check. Then comes the apologizing
49:34
of, but it's very hard to diagnose endometriosis
49:38
because it looks like so many other things. Well,
49:40
not if you actually follow up with questions
49:43
and things like that. I was given the drug Lupron,
49:50
which put me into a chemical menopause when I
49:54
was 28. 28 until 42, 43. I basically birth control
50:01
pills, but I never took a break. That was the
50:03
treatment. When I moved out of state, I had to
50:06
wait for an appointment with my new doctor and
50:09
I didn't get my, I didn't get that prescription
50:12
refilled and ADHD. just left my brain and it
50:19
occurred to me that I was maybe perimenopause
50:21
and that my endo experience is not like how women
50:26
today, younger women today experience endometriosis
50:29
in that there just really wasn't the awareness
50:33
and nobody really talked about it and I welcomed
50:36
menopause because for me that meant finally I
50:40
will get some relief. But not understanding the
50:45
connection. And it's a huge connection. A huge
50:48
connection between my life -long hormonal state
50:54
and how that played a part in the other things
50:57
going on in my life with the ADHD, the unknown
50:59
ADHD. And again, there's this sadness of how
51:06
much time was wasted, how much physical pain
51:10
endured, emotional pain endured. struggle because
51:15
these connections were never made earlier. Absolutely.
51:19
I was just looking for the percentage of women
51:24
with ADHD that have endometriosis. It's 70 %
51:29
higher likelihood of women that have endometriosis
51:33
and ADHD. I thank you for sharing that. That's
51:36
very personal and I think there are probably
51:39
a lot of women out there that do not know that
51:43
connection or the possible connection. And maybe
51:46
you just said something that they went, oh my
51:50
goodness, this is me. And then they could go
51:54
to their doctor and say, hey, I heard this. Or
51:56
maybe look it up first. That's what I always
51:59
say, look it up. Arm yourself with info before
52:01
you go. And then pray that you have a physician
52:05
that listens to you. I do think it's getting
52:08
a little tiny, tiny bit better. I think so. I
52:12
also attribute that to Gen X, that we don't fuck
52:15
around. We ask for what we want. It's taken us
52:19
a lot of years to do it, but we want the answers.
52:23
And so I thank you for sharing such personal
52:26
stuff. I really do. What do you want other women,
52:30
especially Gen X women? And I know I am targeting
52:33
a certain amount of people and maybe, you know,
52:36
I don't know, maybe some favorite baby boomers,
52:38
you know, as we get even older and out. I don't
52:41
think you're ever out of menopause, but but further
52:44
into menopause. I'm sure there's more changes
52:47
that go on. But what do you want other women
52:51
who recognize themselves in your story? What
52:54
can you tell them? What else do you want them
52:55
to know? First of all, let me say, fuck the baby
52:57
boomers. They never did anything for me. So you're
53:01
on your own. Gen X women, I would encourage to
53:06
be confident that you know your body and it is
53:09
not normal to experience frequent or constant
53:13
pain. When there is no real other apparent reason
53:16
and you have pain, that is not. If you are in
53:21
pain, I don't care what any doctor or medical
53:24
professional has ever told you before, you need
53:27
to find someone who is going to listen to you
53:30
because that is not normal. It may be common.
53:33
Common isn't the same thing as normal. I think
53:36
what either you said or alluded to, you must
53:40
be your own advocate. That is educating yourself
53:44
as much as possible, but that doesn't even mean
53:48
that you have to do all this research to find
53:50
the answer by yourself. It means be aware, listen
53:55
to your body. If you're feeling pain, sit with
53:57
that pain so that you can better describe it
54:01
when you do go see your doctor. We have lost
54:04
this country and this current culture, the tribal
54:09
knowledge. the sharing of tribal knowledge. We're
54:14
a society that's so connected yet so disconnected
54:18
now. Correct. I would encourage anyone who may
54:23
be thinking they have ADHD or maybe endometriosis
54:28
is their connection to find your people and have
54:31
conversations with your people, other women who
54:34
you trust. Even though it may be uncomfortable,
54:39
you've got to take that leap of putting yourself
54:42
maybe in an uncomfortable position to open up
54:46
and discuss it. Don't stop looking for those
54:51
answers. And as best as you can, try to find
54:55
those medical professionals who will listen to
54:59
you and work with you. That's great. It's great
55:01
advice. Last question for you, Jen Walters. What
55:04
haven't I asked you that you wish people understood
55:06
about ADHD? Well, that is a It's such a loaded
55:10
question. ADHD is such a massive topic. Here's
55:14
what I would say. ADHD is misnamed. The name
55:21
does not accurately describe our brain type,
55:26
our experiences, what our body's actually going
55:29
through. And so it's so easy to think you know
55:33
what ADHD is, squirrel, or bouncing off the walls.
55:39
girls the hyperactivity is in their minds. Okay,
55:44
so I think given that's a big question and has
55:48
many answers. I think that's probably one of
55:51
the biggest that the name does not accurately
55:56
describe what we go through and until they know
56:01
more and can improve the name. Then if you know
56:07
somebody who's been described been diagnosed
56:10
with ADHD or if you yourself have been described
56:12
just know that it's it's the Reality is much
56:20
broader and much more complex and much deeper
56:24
than what the name suggests. Well, the first
56:26
name was ADD, just the deficit, right? Not the
56:30
hyperactivity. Then they changed it to that,
56:33
but that doesn't fit a lot of females. And that's
56:36
not the only thing, right? But more research
56:39
will lead to the discovery of, hey, this is not
56:42
the correct name, right? This is what we have.
56:45
That's what we'll deal with, but try to further
56:46
it. I thank you so much. Thank you. You are one
56:50
of my favorite people. You know that. And what
56:54
you don't know is that Jen is very funny and
56:56
this was a very serious topic. So we'll come
56:59
back and we'll do some, you know, something else.
57:02
Okay. But thank you, Jen. Thanks so much. Thank
57:05
you so much. I hope this conversation helps someone
57:08
ask a better question about what they've been
57:10
living with and feel a little less alone while
57:13
they look for answers. As always, you can find
57:16
all my contact information in this episode's
57:19
notes. I'm Evet DeCota and this is The Original
57:22
Self Podcast. Thank you for listening.