32: the one about ups and downs

ADHD symptoms can go up and down over time. That matches my experience, how about yours? That idea is now backed by research showing that we can have good years when our ADHD symptoms are manageable, or maybe not even apparent and in the difficult years, ADHD shows up significantly causing problems at school, work, or in relationships. Today we are exploring how we can use that information to help ourselves, and our medical providers, in both the ups and downs. We will also share 6 guiding questions that help us feel and do our best .

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Transcript

Moira Maybin 00:05

ADHD symptoms can go up and down over time that matches my experience. How about yours? This idea is now backed by research, showing that we can have good years when our ADHD symptoms are manageable, or maybe not even apparent. And in the difficult years, ADHD shows up significantly, causing problems at school, work or in relationships. Today, we are exploring how we can use that information to help ourselves and our medical providers in both the ups and downs. We will also share six guiding questions that help us feel and do our best. 

Welcome to the ADHD friendly lifestyle. I'm your host, Moira Maybin, a woman, mom, educator, and I have late-diagnosed ADHD. This is the place to practice getting rid of guilt or shame and spending more time with our strengths and passions. There are things that I wish I had known about my ADHD sooner that is allowing me to make different decisions to make my life more ADHD friendly. And I want to share them with you. For show notes, including next steps, resources, and articles on this topic, visit ADHDfriendlylifestyle.com.

Moira Maybin 03:42 Last fall, I remember seeing headlines only 10% of children outgrow ADHD that I didn't pay too much attention to. I scanned it, but it didn't land. A few months later, when the lead author of that same study wrote an article titled “New Research shows ADHD Symptoms can go up and down”. That did get my attention. And it was the same research study. These findings give us and our medical health practitioners more ways to understand why when we show up in their office seeking diagnosis, treatment or support, it's not appropriate to say things like, well, it's unlikely it would have been missed for this many years or you're too smart or successful, organized together to have ADHD. Lead researcher Dr. Margaret Sibley, Associate Professor of Psychiatry and Behavioral Sciences at the University of Washington School of Medicine, and a researcher at Seattle Children's Research Institute also reassures us that it's normal to have times in our life where things may be more unmanageable. And other times when things feel more under control. That might be a constellation if we are currently in a good space. When we feel crappy, it can just feel like more. Well, crap. Stay with me. There's hope for that. 

Moira Maybin 04:56 The findings come from the multimodal treatment study of an ADHD, MTA that spanned 16 years. It started in the 1990s by following children both with and without ADHD every two years, gathering information on many aspects of life from the participants, their parents and teachers from when they were eight years old, into their mid-20s. They found that most participants ADHD fluctuated over the years, about 10% experienced, moderate to severe ADHD for the entire study. It was also in the 1990s, that the idea emerged that 50% of children outgrew ADHD. When children previously diagnosed with ADHD became adults, there was only a one-time follow-up interview, it was only a snapshot of life with ADHD. And in that given moment, many did not meet criteria for ADHD, especially as we now know that symptoms become more internalized with age. They may have had traces of ADHD, but we're currently coping on our own. The MTA study showed that for most of us, ADHD symptoms increase with more stress, or with new experiences and challenges, like changes in school, work, living situations, relationships, stage of life, and family situation. If you have found yourself with a medical provider whose less than understanding, you can enlighten them by sharing the research by going to the show notes for this episode. 

Moira Maybin 06:19 I've met people who had a diagnosis as a child, who were told they no longer had ADHD and then were read diagnosed later. This study suggests that it would be more accurate to view ADHD, a neurobiological condition as being in remission. More importantly, that remission is likely not permanent. Most of us will face ups and downs with our ADHD over our lifetime. For those of us who are either late-diagnosed or supposedly had outgrown our ADHD, and have spent years without treatment or support, we can readily identify different tipping points in our lives. Maybe it was getting promoted into a job that had too many tasks not naturally in our skillset, and less of the strengths or interests that led us to that type of work in the first place. Another common one is leaving home or going to school and suddenly being responsible to create routines or structures for our life that had been there naturally before. Maybe it was a health-related burnout from trying too hard. Many of us with ovaries experienced tipping points at times of great hormonal shift, puberty, pregnancy, childbirth, menopause. I've also heard from those who did okay as parents, but once their own children left home, they struggled to find a new structure routine. A similar thing can happen with retirement, we can look back and clearly see situations or times when life was harder or easier. For me, there was a general trajectory of things getting more and more difficult, having increasing health issues, and getting close to the tipping point when I was postpartum. With my second child. It was the untreated ADHD ongoing health issues, parenting to neurodiverse preschoolers on my own for four to six months of the year, and returning to work that sent me over the edge. 

Moira Maybin 08:02 To manage life with ADHD Dr. Sibley recommends that with our support team, we work together to figure out what helps us feel and do our best. She describes it as cracking the code by having ways to help us tap into the ups and downs in a variety of ways, including lessening challenges to our executive function and making it easier to do the hard things. Researchers have yet to find what causes ADHD to flare, simply said it could be stress the wrong environment, or not having a healthy lifestyle of proper sleep, healthy eating and regular exercise. Also, if a person is not taking the time to manage symptoms, and really understand what works best for them, then the symptoms are probably going to get more out of control. 

These ups and downs occur not only to varying degrees but also in varying timeframes. How often have you experienced hours, days, weeks or months that you feel like ADHD has got the best of you? And then things shift. I experienced that monthly with my cycle. But on top of that, when I look back at the last few years, I have actual evidence of how these ups and downs have played out for me. I write a letter to my ADHD every few months to help reduce stress. Notice my thought patterns and perspectives. And now to see myself over time. And getting ready for this episode, I noticed two recommendations from the study showing up in my writing. One was that my journey to understand and recognize myself as someone with ADHD has been a vital part of my well-being. Here's an example from the fall of 2019. 

Moira Maybin 09:31 Right now ADHD, I feel like you are winning. Did you know it was a competition? I am tired. It's hard to pay attention to you when you consume so much of me of my kids and make it so hard. When I'm feeling this way. It's hard not to try to get on top of all the things. Not doing enough is not our problem. There are too many things and not enough time. I'm currently sliding off the horse. It feels like the saddle has twisted and I'm hanging sideways praying to God I don't feel What if I just expect that there will be tough times, be kind of forgiving about it, get back on the horse by going back to what works, self-care, self-compassion, and tools to help me align my goals and intentions with how I spend my time. Just saying that reminds me of the freedom that comes when I expect that we are going to fuck up, get it wrong, entirely forget to go to a meeting or have to throw in the towel, as I'm too tired. It is freeing when I can be done. Not everything but what I set out to do, or have buffers. Both of these help us. And then we like it when we have some free will. And the day doesn't feel over-scheduled. My goal for life was for it to not feel so hard. I get glimpses of that. I also realized that the life I want isn't possible and easy. Hmm. Do we still want that life? What parts I continue to explore my ADHD and wrote this a few months later. 

Moira Maybin 10:57 Thank you, ADHD for showing up. So consistently and profoundly. I have appreciated getting to know you in a new way, and being able to recognize you coming when you're going to take center stage. And when you need me to beat a hasty retreat, I have become more tolerant and understanding of you. I have also increasingly recognized how you made me unique, I'm still accepting of the fact that you are a double-edged sword, you make my life harder, but you also make it more unique. It's hard when you show up unexpectedly, or the biggest thing is how you impact me socially, the uncertainty insecurity, second-guessing and maybe even the obliviousness causes me some anxiety. I like my new saying that shame is not my friend, and I have no time for it. Learning how to take care of ourselves and negotiate this world is a big ask. It sounds to me that I seem to be softening and moving towards greater acceptance of my ADHD. It doesn't always last. And it was easy to find plenty of examples of those ups and downs this one a couple of months later, in late winter 2020. Fuck you ADHD. I am not feeling the love today. Fuck you for having to second goes double-check, doubt and do the things that I don't want to but that at times I feel compelled to do shit. I know why it's like this. I'm in pain. Today is not a good day physically. Okay, this is an opportunity to listen and learn. I hate this shit sometimes. But I know now that if I don't listen, and I don't do the work to make it less work, I will end up shittier than I am now. 

Moira Maybin 12:37 Yet, by the summer of 2026 months later, I was feeling much better. I had begun to surround myself with the kind of people who helped me be well, and who were receptive to me asking for help when I needed another recommendation from the study. For me, that also includes paid help for those of you who don't have ADHD-specific support, like a therapist coach or an accountability group. I do want to say that I wouldn't be able to be where I am today, without relying on all three of those things. Here's the deal. Doing this stuff is hard. If any of them were easy, we would have done it. When we start to feel supported, seen and heard. It can change everything. Here's what I was thinking. I'm very grateful for this community that having ADHD has brought me I'm appreciative of what I've achieved. But it's come at a cost that I still find hard to bear. I'm trying to learn what my capacity is and how to live within it. That still feels really freakin hard. My mental health is getting the support it needs. I continue to try new supports to help ease my executive function load. My body is what bears the biggest brunt of all of this from the neglect and care for it, including pushing it way too hard and long for most of my life to the accumulating physical challenges related to autoimmunity with flashes, concussions, poor nutrition and overexercising. So ADHD, we are friends. We are foes. We are complicated and messy. We are also love sunshine, music, joy and warmth. I'm learning to turn my mess into my message. Let the adventure continue. By the way, can you please get more sleep? Go to bed earlier. Your future self will thank you. 

Moira Maybin 14:21 Dr. Sibley’s next recommendation is strategies to limit our ADHD getting in the way. Working on this when things are good is important so that they can help us through the more challenging times. Dr. Sibley wants us all to know we can be ready for that next time things change in the spring of 2021. During a tough time, I was able to do just that. It is still hard. I am tired right now. I'm questioning when or if I can do things. The last few months have been really not what I wanted them to be in so many ways. Dealing with crappy stuff is part of that. I guess I have the I don't want it. And I want to feel like I am on an upward trajectory and life is getting easier and better all the time. The reality is, I don't feel that way. There have been dark times. There have been times when I've been struggling a lot. I'm noticing more how you make my life difficult. And for those around me who also have ADHD, who pisses me off that it's this way, I still think you suck a lot of the time. The part that gets me the most these days, typical Parenting is hard. But being a parent with ADHD, who is parenting kids with ADHD is freakin hard. Oh, wait, I think I'm spiralling. Okay, I'm gonna try to change the record. I was reminded today that I've created a good support team for myself. We did that. We persevered. When we found people who weren't right for us, we were also asking for and getting the help we need it. I've learned that when I yell, it's because I'm feeling unheard or misunderstood. So now when I start to heal my family and am using it to be curious about what has happened, I feel misunderstood or unheard, which is pretty damn awesome. I've been still trying, but not trying so hard. What I'm trying to do is pay attention to myself, it's getting easier to notice what I need to notice. I'm also paying attention to what is working and what is not. I'm hopeful that we can do this. I need time and space. It's okay to take it. All of this will take time, energy and effort. To have those we need to take care of each other. We need to listen here and see each other. I'm trying to give you just enough structure to keep us going and what we need, but also more free time and unstructured time, so we can fully relax and just be I'm also learning that we both like habits. 

Moira Maybin 16:47 It's often when I'm writing to my ADHD that I get back to reflecting on and considering questions like Dr. Sibley's guiding questions. It will help us feel and do our best when we know what kind of lifestyle helps us to feel healthy and focused. How do we need to structure our day to get things done, I need to consider both ends of the spectrum. Some structures so I don't follow my nose all day, but not too much that it sets me dry or leaves me irritable. This brain needs its free-range time. It's important to know what kind of work we look forward to and excites us to know what we are good at, and how to use our strengths to help us be successful. We all know that I'm a good talker. So here I am. These guiding questions are the same as how we talk about building an ADHD friendly lifestyle. The big takeaway for me from this is that we need to expect our ADHD to go up and down. But that we don't have to feel like we've been taken, hostage. 

Moira Maybin 17:43 I haven't forgotten the 10%, who experienced moderate to severe symptoms for the entire 16 years study. And for those of us who are late-diagnosed, and have years or decades of experiences to unpack, and well-worn coping habits to reevaluate Doctor siblings advice for when we are feeling that we are in that 10%. And I know we can't all fit in there. So some of us are being too hard on ourselves is to believe that progress is possible. ADHD can feel so isolating. And we can change that by finding others who also value support and treatment. medications and cognitive-behavioral therapy have been proven to be effective for adults with ADHD. When times are tough, or good, it won't always be like this. So when things change, because life always does. Knowing what and where to go for support. It's a step in the right direction, we are worth it. 

Moira Maybin 18:54 Okay, you've done the hard part by staying to the end. Here's your recap for today's episode. Long-term studies of ADHD show that ADHD symptoms can go up and down over time. medications and cognitive behavioral therapy are proven to be effective for ADHD in adults. Even when things are going well, ADHD can return. Each of us with a support team needs to figure out how to feel and be our best. We can do that by considering these six questions. Number one, what kind of lifestyle helps you to feel healthy and focused? Now number two, how do you need structure in your day to get things done? Number three, what strategies can you come up with to stop your ADHD from getting in the way of success? Number four, what kind of people should you surround yourself with to support you when you need help? Number five, what are you good at and how can your strengths help you to be successful? Number six What kind of job what holds your interest and makes you excited to go to work each day? ADHD comes with ups and downs. So whatever life is like right now, it won't always be like this. So when things change, knowing what to do, and where to go can make all the difference.

Moira Maybin 20:16 I hope you've enjoyed today's show, and we'd love to hear your thoughts. To get in touch. You can write me an email at ask at ADHDfriendlylifestyle.com. Connect with me on my website, Instagram, and Facebook at ADHD Friendly Lifestyle or Twitter at ADHDFL. Every episode has a website page was shows notes transcripts next steps, resources and articles related to the topic. To get these visit ADHDfriendlylifestyle.com. If you'd like to support the podcast, the best way is to subscribe to the podcast player of your choice and by taking the time to rate and review it there. There are other podcasts for your listening pleasure. On Hacking your ADHD Will Curb gives Tips Tools and insights. Brendan Mahan hosts ADHD Essentials focusing on parenting and education. Thanks for listening. See you later.