“I was barely surviving day to day.” Menstruating as a neurodivergent woman

“I was barely surviving day to day.” Menstruating as a neurodivergent woman

We sat down with Sarah Snyder-Casteneda who hosts “Adulting with ADHD”, a podcast that discusses mental health and ADHD. Her work has led her to publish an eBook, “Conversations about ADHD and Hormones”, which is a culmination of expert and personal inputs regarding neurodivergence and hormonal changes. Sarah shared her own experiences of menstruation with us, reflecting on the severe mental struggles she faced at different stages of her cycle, and her ADHD diagnosis journey.

Q: Let's start by talking a bit more about your ebook ‘Conversations About ADHD and Hormones’. What are the most important takeaways for people who haven't read it? 

Sarah: That book was a culmination of a series of podcast interviews I did regarding ADHD and hormones, and the biggest takeaway I took from those was that there is research on this stuff from like 20 years ago and it hasn’t trickled down to the practitioners. And I don’t know if this is specific to the US or internationally, but the practitioners just have no idea this stuff is going on even though the research has been out there for so long and books have been written. So when I started coming out and doing interviews and talking to people, this wasn’t the first wave of these conversations. They happen in spurts and then years will go by and nothing changes and then more interviews and nothing changes. It’s just getting the practitioners to integrate that research.

Q: In terms of your own experiences, what motivated you to write the book and share your story with other people?

Sarah: I was diagnosed late at 35. I get kind of emotional thinking about it because I’ve had this whole life of not knowing and everything was so damn hard. So my diagnosis was key, as it is for most people, and then I found my way. So I adapted even though I didn’t think menstruation was an issue, I found a way to deal with it. I had a child, obviously there’s a lot of hormone stuff there, none of which I’d heard about. I didn’t hear about any of the hormone stuff until we were in lockdown because of COVID and I suspect I’m nearing perimenopause. This hasn’t been confirmed but I think I’m pretty close to hitting that point where the oestrogen just tanks out. And I could feel it, and maybe being in lockdown allowed me to really be in touch with my body but I just knew things were changing and the old stuff wasn’t working anymore, and that’s when I started listening to other people and a lot of this is anecdotal as far as me finding out. Just listening to other patients talk about it, I saw a conversation on Reddit that really opened my eyes and it was about all these women being like “my medicine does not work before my period”. And I was like, “the doctors aren’t validating me” and then a bunch of other women jumped in on that tread, “yeah, same here, it’s not working”. So I would say that Reddit thread was probably my most watershed moment of “oh my God, we’re on our own out here.” So, I went in search of answers and started my own research. 

Q: This seems to be a very common story in women's health. So for readers that are looking for their own answers, in really simple terms, how do hormonal changes during the menstrual cycle impact ADHD characteristics?

Sarah: From my understanding, first of all it involves oestrogen and progesterone, but for me an easy way to remember it is that oestrogen and dopamine have this relationship where when oestrogen levels are good, you’re gonna have an easier time regulating your dopamine. That’s how I view it. And then progesterone, the levels are kind of like in proportion to each other. So that proportion has to be good too for everything to work. So it really all just comes down to oestrogen and progesterone and making sure those levels are where they need to be.

     Q: How did those hormonal changes impact your ADHD traits?

Sarah: So in the perimenopause example I went to my OBG (gynaecologist). And I told him everything. And he was like “Cool story bro, you need to lose some weight.” Just completely ignored me and went straight to his notes like “Your BMI is this.” So I promptly changed gynaecologists and went to another one, a woman, and I talked to her and told her the same thing. She didn’t question me once and she said “Yeah you need a localised IUD because I was on an arm implant, NEXPLANON, and that causes you to be very heavy on progesterone. So I had no chance of getting that balance, I didn’t know any of that. So we switched to Merina which is localised. Side note, it hurt like hell and it was a traumatic installation process, that’s like a whole other story, but long story short, once the hormone was localised in my IUD I didn’t have those issues anymore. And the issues were just that my emotions were out of control, I could not find my energy, I kinda felt like I was on a little row boat and the seas were just so choppy and I could not get a grip. I was barely surviving, it wasn’t like I was in crisis but I was barely surviving day to day. That was in lockdown and that’s how I noticed. I thought, I’m in lockdown, I’m not running all over town, I’m in my house and I can’t get a grip. So that was how I kind of figured it out.

   Q: Have you spoken to a lot of other people that have experienced the same things?

Sarah: Absolutely. For a lot of women I’ve spoken to, it’s not until they hit menopause. There’s so many menopausal women that found out they had ADHD because they hit menopause.

    Q: What do they say is the main indicator that prompts them to get tested?

Sarah: I get the sense that they were feeling like I had just described but even more magnified. Just unglued, like you’ve lost your mind. And I get the impression that they talked about it with their doctors and sure enough, some of that research is trickling and I’m not sure they were able to connect it right away. They talked to their psychiatrists and they were like “I feel completely unglued”. And so they take a test and it’s like, “Oh, you have ADHD”. And what makes it difficult is that feeling unglued and unravelling is a part of menopause anyways. So when it’s magnified, how do you know that’s ADHD? So basically for these women it got so magnified they had to seek assistance for feeling so undone. And for the lucky ones, the dots connected.

Q: How were your periods when you were growing up?

Sarah: I always struggled with mental health and some of that was things going on in my childhood, so it was really easy to blame it all on my childhood. But it was a very rough time, my entire adolescence I remember just struggling with emotions and it seemed more than the average bear I would say. You know, there’s all the PMS talk but this just felt different. And I didn’t know it at the time, and just thought ‘oh, it’s my PMS’, ‘oh, I’m crazy’, ‘I’m flawed’. I wasn’t aware of it at the time and it was only in my late 30s, early 40s that I was able to look back and go ‘Imagine if that girl had the treatment she needed.’ And I have a daughter now and as soon as puberty hits we are gonna have a conversation about it with her doctor.

    Q: Did you get any support growing up?

Sarah: Not only was there no support, but that stuff also wasn’t talked about a whole lot, especially in my family. I was the one in college who went out and got her first therapist and it would be years and years before I even got on medication or whatever. So it was a bunch of murkiness. Navigating a lot of really tough emotions during that time. And up to college, college was really hard too. And that’s just a rough age to be at not knowing what’s going on in your body and not having the resources.

    Q: Do you have any other period-related conditions, diagnosed or undiagnosed?

Sarah: I suspect there was some PMDD (Premenstrual Dysphoric Disorder) going on. I haven’t had periods in so long because I’m on an IUD now, but I assume there was a lot of PMDD going on back when I was having periods. And my sisters also describe that, they’re certain that they have PMDD. The other thing was PCOS, I think it’s in my family and I haven’t had it diagnosed, but I think that also has a relationship with mental health. I think it’s all interconnected.

Q: What were your first feelings when you got diagnosed with ADHD regarding your experiences with menstruation? Did it provide some clarity towards what you’d been feeling?

Sarah: Not for a very long time. When I finally figured it out it was only in retrospect. I never got the clarity while I was going through it, it came later.

    Q: How was sleeping for you while on your period? Does having ADHD present other challenges?

Sarah: That was a huge problem actually. It’s interesting that you bring it up because I didn’t even consider the hormonal component. I’m sure that was part of it. I was in psychiatric care and I had to completely address my sleep. I was given a sleep hygiene document and it was all these things I needed to do and that’s when I broke screens before bedtime, that’s when I learnt about melatonin. It was basically a crash course in sleep; I had to suddenly figure it out. That was a huge part of it. And then in lockdown I had to relearn it cause there was just so much fear and anxiety about everything going on in the world. I think I went two weeks with sleeping difficulties at one point. And a lot of times in these situations you’ll learn how to address a challenge but then something new in your life happens and you have to go back and re-address that challenge, and that’s something I think we need to talk about more. When you do get diagnosed and find your treatment, you’re constantly recalibrating every time your life changes.

Q: What adjustments did you make to your everyday life during your period to make it easier to handle? Do you have any suggestions for other neurodivergent women?

Sarah: Giving yourself extra care around that time and taking fewer commitments and giving yourself more flexibility. In my experience, it’s less about fixing the problem and more about opening up more space to walk alongside that problem instead of just thinking you’re broken and you need to be fixed. You’re not a car, you don’t need to be fixed, you know? That’s not how it works. And I’m glad to see we’re having more conversations about that. I feel like people are more open to having those conversations than they used to be.

      Q: What was the most challenging part of having a period for you?

Sarah: I can guarantee it was the emotions that I just hadn’t connected at the time. Even my baseline was always choppy, so during my periods it amplified that choppiness. And I remember thinking it was PMS and just being completely out of control, being debilitated. I was probably the crazy ex-girlfriend for so many boyfriends. They probably all remember me as the crazy ex. But now that I’m a lot more on top of this stuff, I can talk back to that and be like “no, no, no, that’s not how it is.” And I won’t let people use my hormones to discredit me or dismiss me. And that stuff is super important for women to have, especially at such a young age. You need to have that agency. And that’s another conversation that this stuff triggers; some women don’t want hormones to be part of the dialogue because they don’t want it to be used to discredit them. So that’s a whole other conversation. But in my experience, shedding light on the issue can only help.

  Q: What would you say is the most challenging part of having ADHD?

Sarah: I would say it’s being interested in so many things and having to pick and choose and regulate my attention and focus. Case in point, the stuff that we’re talking about now is so interesting to me. There’s a fantasy land where this is what I do full time. And I’m also passionate about my day job. I’m actually at work right now taking a break to talk to you. So balancing all this out, I spend a lot of time thinking about this. None of it can go, I can’t cut this part out of my life but how do I marry it with the life I have now? I have a daughter, she needs me, I can’t just go off and pursue whatever passions I want on a moment’s notice. So getting all that stuff figured out is a non stop calculus that you have to work through. Argh, even that answer was unfocused and jumbled. The challenge of ADHD is this answer's chaos!

Q: So going back to when you mentioned that you suspect you’re reaching perimenopause, how does that make you feel? Especially knowing it will be another fluctuation of hormones?

Sarah: I feel good because I have a gynaecologist who listens to me and gets it. I also feel good because more people are talking about it. I see it a lot more in commercials and marketing, it’s becoming part of our society now in a way that it wasn’t before, that’s one thing. The other thing is I have a personal network now of women who are on the other side of menopause, and I have a couple of women I’m in touch with regularly and just seeing them is affirmation that it’s gonna be okay. “Look, these women made it and if you hit a road bump, they’re gonna know what to do about it because they’ve been through it.” So those relationships are really special to me. For other reasons too but that’s really helpful to know that I can go to them when I’m hitting that point and they're gonna understand.

Q: What would be your main piece of advice for someone with ADHD that’s preparing for their first period?

Sarah: I would start logging everything you can and learning as much as you can about your body. I know on Google they have a lot of different trackers and spreadsheets, I would find one from a very reputable place. I was researching PCOS at one point or something and there was a checklist, developed by a doctor, with symptoms, feelings, everything in the kitchen sink. And of course with ADHD it's like, how do you track stuff? So here’s the thing; it’s not going to work every time, I’m talking about it right now thinking, ‘I couldn’t even do this today’. I would find a simple way of tracking your symptoms. Cause basically what you’re trying to do is you’re trying to bring something concrete that you can take to the doctor, instead of thoughts and feelings. Give them something on paper that they can work with.

Q: Knowing what you do now, what advice would you give to your younger self for how they can process the emotions linked to menstruation?

Sarah: Don’t be so hard on yourself, it’s not your fault. Hang in there.

Q: Do you have any closing thoughts? Or a message you want to share that you think is important for people to know?

Sarah: Just that there’s so much of this that I feel like we’re kinda on our own with, but we’re not completely screwed. We can be there for each other and figure it out the best we can. I mean, it’s not really an ideal situation right now, but just helping each other and listening to each other, doing our best and hanging in there. I think I tell myself to hang in there a lot to get through stuff.

Find Sarah and more information about her work at adultingwithadhd.com


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