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My AD(H)D Journey

Posted in Personal

I found your interest in a post about my AD(H)D journey surprising. I included it as a possible topic in my request for help only because I’d recently experienced a lot of new symptoms. I never expected it to be in the top 5 most requested.

I’m going to shorten “ADD/ADHD” as AD(H)D. I’m not an expert on either “variation” of the condition, so I don’t want to imply that what I’ve dealt with or information I’ve found is specific to one or other. Also, some medical professionals are now using ADHD as an umbrella term to to cover hyperactive type (previously referred to as ADHD), inattentive type (previously referred to as ADD), and combined type (also referred to as ADHD).

Youth

I suppose I should mention that I have no “real” memories of what I’ll be discussing in this “youth” section. Instead, they’re those false memories you develop as a result of family — or others — telling you stories frequently.

According to my parents, I was diagnosed with AD(H)D around 3-4 years of age in pre-school. The principal suggested I get evaluated because my hyperactivity and difficulting focusing went beyond average.

However, I was sickly as a child due to a congenital immunodeficiency problem, and was often on several medications at once. Despite my new AD(H)D diagnosis, my parents didn’t want to put me on medication to avoid having to worry about drug interactions. While AD(H)D could make life difficult, it wasn’t a matter of life and death like several of my illnesses had already been — and would prove to be later.

My childhood didn’t have much emphasis on AD(H)D and potential symptoms or problems. My mom — who, at the time, was an elementary school teacher — undertook helping me learn to manage the symptoms she saw. Now, while she certainly had the best intentions, she was not an expert on AD(H)D. She focused on the hyperactivity and concentration, and that’s about it.

With enough emphasis on keeping myself under control, I eventually developed a mask of normalcy. Because of that, I, like many, assumed AD(H)D was no more than hyperactivity and lack of focus and that I’d been lucky enough to “grow out of it.”

Unfortunately, this ignorance — on my part and on my parents’ — led to a lot of disagreements, disappointments, and annoyances over the years. Several of the key issues my parents and I fought over in my childhood could likely be associated with AD(H)D. For example, my messy/disorganized — but never unhygienic — room or my “selective listening” — my mom used to swear I purposefully tuned her out, but I just didn’t hear her through my hyperfocus.

It could also be said I developed anxiety relating to the need to make sure school assignments were perfect. My mom was very hard on me about what she called “careless mistakes” and “inattention to detail.” While there’s a good chance my AD(H)D was at least partially to blame for those, the anxiety helped me ensure that everything was as close to perfect as I could make it. And that sticks with me through today.

As I got older, I attempted to tackle things I thought were bad habits or problems with me — difficulty with acquisitiveness, procrastination, forgetfulness, etc. I spent many years trying to “fix” problems that likely can’t be fixed. If I’d known that, I could have instead tried to find coping strategies. But I digress.

Ultimately, what I mean to say is that I thought the strategies that had been drilled into me as a child had served me well; had “solved” my AD(H)D. To a small degree, that was true. But really, I’d never learned much about AD(H)D, so I was left without tools for many issues I later learned were likely symptoms, and completely unprepared when my symptoms ramped up last year.

Re-Emergence of Symptoms

Around the middle of last year, my AD(H)D kicked into overdrive. Serious contemplation of possible explanations led me to believe it may have been caused by an extended period of stress.

Throughout most of 2020 — April through the end of the year — Jim had been unemployed. Then in June of 2020, I had to undertake a massive web update at work single-handedly, followed by a total web overhaul that continued through 2020 and well into 2021. In April 2021, I took on additional duties when a coworker left. Then came the cicadas with a sound specially developed to drive me crazy — OK, not literally, but it felt like it. And that was all rounded out with the stress of applying for a new job that I desperately wanted and feared I wouldn’t get. All together, about a year and a half of nonstop — and overlapping — major stressors.

Looking at it all laid out, I suppose it’s no surprise that my AD(H)D — and other aspects of my mental health — were negatively impacted.

However, recently, I came across a post on Instagram — I highly suggest you watch the video, it’s about a minute long. The TLDR version is anxiety can mask AD(H)D. Some kids develop anxiety that effectively masks many of their AD(H)D symptoms. Then, when the anxiety is dealt with, those symptoms rear their ugly heads.

How does that relate to me? Well, in May of last year, I started taking Lexapro for anxiety. As I understand it, it’s one of those medications that has to build up in your system a bit to get full effects. And I’m on a low-ish dose. My first AD(H)D symptoms started escalating in June. The most devastating symptoms started appearing in July. The timeline definitely supports the possibility I found on Instagram.

Now, while the situation was certainly no laughing matter, I jokingly referred to my maddening increase in symptoms as my brain taking out an AD(H)D subscription box to try out all the possible symptoms, ordering more of all those I hated most. Upon reflection, though, I realize I was more attuned to those symptoms I hadn’t been unknowingly dealing with all my life. I was more aware of them, and, without any coping mechanisms, they had a greater impact on me.

Among myriad other things, I found it increasingly difficult to focus. I was jittery, bouncy, and agitated. My memory deteriorated, leaving me increasingly more forgetful. And, worst of all, I had zero impulse control. This all was on top of all the symptoms I’d been experiencing for years and only later discovered could be AD(H)D related.

The lack of impulse control was by far the worst and the scariest. It manifested in purchasing and eating. I would tell myself not to buy something because I didn’t have money or didn’t need it. I’d specifically say, “don’t do that; don’t spend money you don’t have,” only to purchase it on credit. The same would happen with food; “don’t eat it, you aren’t even hungry,” or “you don’t even really want that,” then I’d gobble it down.

I couldn’t control my own actions, and it was horrible. I felt like I was merely observing these occurrences, without any input on the outcome. It was also demoralizing as I put back on the weight I’d lost in the previous two years in an attempt to get healthier.

Seeking Help

I was so embarrassed and ashamed of my actions that at first I tried to hide them. But, after a few weeks, it became apparent that whatever was going on wasn’t going to go away. So, I opened up to Jim and started doing some research. It’s how I learned that AD(H)D can cause a lack of impulse control.

I also discovered the mental health side of Instagram. Accounts like adhdandbeyond (although, unfortunately, this account seems to have been abandoned), adhdelite, and adhd__things have helped me learn more about AD(H)D with posts from people dealing with it as opposed to the generic results Google usually brings up. They provide me with nuggets of information I can then research further. This research led me to ADDitude which has some good articles.

So, at my next appointment, I spoke to my psychiatrist about the difficulty I’d been having. There was some back and forth to figure out the best medication for me, but eventually I was prescribed a non-stimulant medication: guanfacine.

Within a couple of weeks, I started noticing a difference. I could choose not to buy or eat something. While difficult at first, it improved over time. My memory improved. The frequency of days where I couldn’t make myself focus decreased. Granted, it wasn’t a miracle pill. I wasn’t “cured.” But I felt more myself, and my symptoms weren’t so overwhelming.

I also found a new therapist — my previous one had left the service I use — to help me learn coping mechanisms. He’s been working with me on cognitive behavioral therapy. He also introduced me to alpha brainwave music for concentration, which is very useful — when I remember to use it.

Symptoms

So, what are those symptoms I’ve hinted at several times? The ones that I’ve dealt with most of my life, but didn’t know may be related to AD(H)D.

  • “Brain lag”: not processing words and asking for repetition, only to process before the repetition occurs
  • Choice paralysis: being overwhelmed by too many choices or decisions leading to nothing ever getting done
  • Conversation Issues
    • Dominating conversations
    • Making everything personal: relating to others by sharing personal stories with similar situations
  • Eating Disorders
    • Binge eating
    • Forgetting to eat
    • Eating the same food over and over
  • Executive dysfunction: lacking the ability to handle frustration, start and finish tasks, recall and follow multi-step directions, stay on track, self monitor, and balance tasks
    • Spending large amounts of time with a filler activity, like scrolling through Instagram, because of an inability to start a specific task coupled with an unwillingness to do anything else until the task is complete
  • Financial problems
  • Hyperfixation: becoming completely engrossed by something, to the point where it becomes all-consuming and disrupts your day-to-day functioning
  • Inattentiveness
    • Difficulty following and maintaining conversations
    • “Galaxy Brain”: spacing out during an activity only to eventually refocus without any idea how much time was lost in thought
    • Problems with object permanence: forgetting to complete daily tasks, pay bills, do chores, keep appointments, take medication, etc.
  • Inconsistent Focus
    • Difficulty switching tasks
    • Inability to stick to one task
    • Lack of follow-through: starting a new job, hobby, project, etc. only to lose interest or be unable to finish
    • Brain bouncing around from thought to thought
  • Memory problems
    • Difficulty recalling information that the brain has deemed unimportant, regardless of the number of attempts to learn it
    • Forgetting thoughts almost immediately after having them, sometimes followed by attempting to recreate the activities that triggered the thought in order to trigger it again
    • Frequently losing or misplacing items
    • Trouble recalling words, even ones commonly used
  • Mood disorders
    • Anxiety
    • Depression
    • Emotional hyperarousal: experiencing both happiness and criticism more powerfully than the average person
    • Impatience
    • Rejection sensitive dysphoria: extreme emotional sensitivity and pain triggered by the perception of being rejected or criticized by important people
    • Trouble regulating emotions
  • Poor impulse control
    • Impulse purchases
    • Interrupting others
    • Not thinking before speaking (blurting things out)
    • Oversharing and over-explaining
  • Repetition: replaying songs or movies over and over
  • Sensory processing disorder: Presents in many ways and can include poor balance/clumsiness, clothing feeling scratchy or itchy, problems with certain textures, issues with certain sounds
  • Sleeping problems

I know, it’s a long list; definitely an eye opener. And I’m sure I’ll continue to find more over time. Granted, I specifically said “may be related to AD(H)D” because it’s impossible to know for sure. However, given that I found these in videos and posts that others shared relating to their symptoms, the likelihood is rather high that there is a correlation.

Today and the Future

Now comes the truly hard part. I need to come to terms with my new normal. While there’s a chance my symptoms will go back to what they were pre-2020, I’d still have the symptoms I’ve learned about since then.

I have new behaviors to try to learn; coping mechanisms to implement. I’m still trying to fix/mitigate the physical health ramifications of last summer and fall. Thankfully, the financial ramifications weren’t major and have already been dealt with.

I imagine my future will involve a lot of self-forgiveness. My journey seems to take at least a step back for every step-and-a-half forward. Forgiveness for mistakes, for missteps, for failures. I don’t expect to instantly perfect measures and/or behaviors to mitigate, interrupt, or arrest symptoms I’ve been dealing with — knowingly or otherwise — for the past 30ish years.

However, I’m hopeful that medication, therapy, and dedication will smooth my future journey and help me live the best life possible.

I’d love to think that this post will inspire at least one person to speak openly with someone who can help them. It’s worth it, even if just to learn that an issue you’re dealing with isn’t a “you” problem, but a symptom or result of something else.

Hang in there. With a little help, it can get better.


Thanks for reading; I hope you enjoyed my post. Do you have AD(H)D? How about some other form of neurodivergence? Do you struggle with your symptoms, or have you figured out way to deal with them? Let me know in the comments, I’d love to hear from you.

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7 Comments

  1. ProfesoraH-B
    ProfesoraH-B

    I’m hopping in here from your year-end post. I’m another late-diagnosed person (~37 years old). I was always the “spacey girl”, “distracting girl”, “intense girl”, “know-it-all girl”, etc… My obsession with planners and stationery and insane ability to retain information, combined with what I now recognize as an ability to hyper focus, allowed me to complete a PhD and land a tenure-track job in my field. However, as I started taking on additional responsibilities, my masking/coping strategies could no longer keep up.

    I’ll never forget the day when my primary care doctor stopped me in the middle of lamenting my lack of focus, impulsivity (also food and spending) and general frustrations and said, basically, “I’m sorry, but has no one ever told you that you have ADHD?” She prescribed stimulants and my mind was BLOWN. I definitely cried a lot, mostly for the shamed girl inside of me that was forever trying to hide who she was.

    Of course, it hasn’t been an easy road at all, and my medication is merely another tool in my arsenal of strategies. However, knowing that I have ADHD and talking openly about it has made my life a lot easier. My assistants know that I need body doubling and reminders. I know that I need to take my meds with protein and that adequate sleep is really important to keep me from going off the rails. I also know that if I find myself lucky enough to get into a productive hyper focus mode, I need to just roll with it.

    I’m now seven years into my official diagnosis, and it does continue to get better. Except when there’s an Adderall shortage, yo.

    January 6, 2023
    |Reply
  2. Gwen
    Gwen

    I was diagnosed with ADHD a couple years ago at 24. I relate to every single symptom you listed. I also have bipolar disorder, which is really hard. Sometimes the depression (or the hypomania, but less frequently) makes it so that I can’t work. I’m working on being less hard on myself about all of it. I have a lot of chronic illnesses and I just have some limitations that other people don’t have. It’s hard to accept sometimes when I want to be able to do all the things and I can’t. It feels like I’m making excuses and being lazy but logically I know that if I push myself too hard I’ll hurt myself.

    July 9, 2022
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    • I’m sorry things are rough. I can sympathize with being too hard on yourself.

      July 9, 2022
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  3. Cicily
    Cicily

    What a great read and thank you for sharing so much. My oldest son has anxiety and ADHD. It’s been a struggle and we’ve adapted and continue to navigate challenges as they arise. I found your correlation to ADHD being masked by anxiety very insightful. I’ve often said to his therapists that when we change one medication we notice an increase in symptoms of the other. No one has explained that to me satisfactorily until now. I had always associated it with his growth. But now it’s all making sense. I always appreciate reading and being reminded about why he acts a certain way. It helps me be a more understanding parent. I remember when I learned what ADHD was really all about and so much more then just hyperactivity. It was like a lightbulb went off and so many things were explained. Plus the reality that he’s most likely not going to outgrow this. You’ve given me much to think about. Thank you!

    July 8, 2022
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    • I’m happy that my post is useful to you. 🙂 While I can’t say for certain, I imagine one of the harder things to teach him will be how to balance forgiving himself for problems caused by his ADHD and not getting too complacent and blaming everything on ADHD without bothering to find ways to mitigate or improve them. I wish you all luck in your continued journeys!

      July 8, 2022
      |Reply
  4. Chris Saenz
    Chris Saenz

    Hi Rachel — I was diagnosed with ADHD at age 40 after a counselor I was seeing pushed me to have the screening (it took 3+ appointments and multiple diagnostic tests/interview) or she wouldn’t work with me anymore. As it turned out, after getting the diagnosis I stopped meeting with her anyway because the doctor and my counselor really wanted me on 3 medications and I didn’t want to be on any of them. I had just transitioned to work that was self employment … it would have been more helpful in past jobs where I did struggle more. Later, I found a counselor much more aligned with my wanting to treat my chronic low grade depression, generalized anxiety and ADHD with natural means = which I had pretty much been doing …. I just needed help when extremely stressful times exasperated everything. Things like when my Dad died and big stress and grief.
    I always knew something was going on because I struggled even in graded school and I even remember being tied to my chair in 1st grade because I kept finding excuses to get up and do things … it was very hard for me to stay seated and not move around.
    But, I loved learning so I found ways to do pretty good in most of my classes except for Math.
    The most helpful book I’ve read on ADD/ADHD is Scattered Minds by Gabor Mate. He has ADD himself and his sons have it and he’s a doctor in Canada. The section on self parenting I found really helpful … it deals with environment, sleep, nutrition, exercise, fixing overloaded schedules, recreation/hobbies, creative expression, and meditation and mindfulness.
    There are days when I question my choice to navigate this without medications. But, now I live a mostly retired lifestyle and with few exceptions — I don’t have heavy stress and pressure. I’m able to craft my own environment and schedule.
    Symptom wise, everything you listed is so familiar and I could have made almost the exact same list. I’ve really been seriously affected by eating disorder issues!!!! If I was younger and still in the mainstream work force, I’d most likely choose to try some medications … unless I could somehow have more control over my work environment and schedule. My Dad had it right when I was younger he told me “you need to work for yourself”.
    Ooops this is long and mainly I just wanted to say thank you for writing this … you will help more people who have yet to realize they are dealing with this! And the younger the help comes the better I think … regardless of whether a person chooses natural or medicine solutions or some combination of the two. Awareness is so key. ~Chris~

    July 8, 2022
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    • I’m happy you’ve found things that work for you. 😊 I hope you continue to do well. Thanks for the book I of, I’ll have to look into it.

      I had lots of issues with teachers in grade school as I also had trouble sitting still. I just didn’t have time to cover everything.

      July 8, 2022
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