Chapter 2: Living With Undiagnosed Adult ADHD

Chapter 2: Living With Undiagnosed ADHD Is Like Riding a Roller Coaster—In the Fog

Living with undiagnosed ADHD, in a loved one or in oneself, can feel like being lost in the fog—often on a roller coaster. In fact, after the term roller coaster, the word that people most typically use when telling me their stories is fog.

I opened Chapter 2 of Is It You, Me, or Adult A.D.D.? with Edith’s story:

I hope others can be spared from stumbling through the fog like my husband and I did. For our first 25 years of marriage, I thought Joe was lazy or selfish or both.

Edith also wondered if she was failing as a wife because she had so little success in motivating Joe to be more cooperative and thoughtful toward her and the children. At times she chalked it up to her and Joe marching to the beat of different drummers.

For years, I went back and forth in confusion, with no idea that adult ADHD existed. Then he was diagnosed at age 55.”

Guess what? Adults with ADHD also use the fog metaphor, including this woman, who was diagnosed at age 52:

I don’t quite know how to describe my life to people who haven’t experienced ADHD the way I have.

Imagine driving a car in a heavy fog. You get tense, because you can’t see the edges of the road or what’s in front of you.

In other words, you often can’t see how your actions will result in predictable consequences, which instead seem to come out of nowhere.

So you inch along, gripping the wheel, anxious that you’re going to crash into something.

Welcome Back to the You, Me, ADHD Book Club

The “book club” refers to a series of essays, each reflecting on a chapter in the book that put ADHD marriage and relationships on the map: Is It You, Me, or Adult A.D.D.?

Fortunately, my friend Taylor J. agreed to host the club. She is a mom of four, wife toa man with late-diagnosis ADHD, and has late-diagnosis ADHD herself.

She knows this topic from all angles—and she’s a wonderful writer.

Living in the Fog of Undiagnosed ADHD

Laying the Roller Coaster Track’s Foundations

By Taylor J.

I just reviewed my personal journal entries from 2007 and 2008. Nearly all of them had the same theme:

  • Why can’t I finish these projects?
  • What is it that makes decision-making so hard?
  • How come it is so much easier for my peers to manage all of these variables?

Prior to my ADHD diagnosis, I stumbled through my life, lurching from one crisis to another. As I tried to explain why, I often used the word fog.

I woke up this morning in such a brain fog… could hardly function until 10am! I should make another pot of coffee…

So, it was eerie to read the opening lines of Chapter 2:

After roller coaster, the word that people most typically use when telling their story to the support group is fog.” And for good reason: Living with unrecognized ADHD, in a loved one or in oneself, can feel like being lost in the fog—often on a roller coaster.

Yep. Living with undiagnosed ADHD, in our selves or our partners, can mean that every problem we encounter in our marriage is amorphous, confusing, and hard to grasp.

Pulling the Plug on the ADHD Fog Machine

Here in Chapter 2, Gina worked to “pull the plug on the fog machine.” She does that by answering the most common questions she hears in support groups—the cause of ADHD, the diagnosis, and the treatment.  For example:

Question: “Why can my partner pay attention when she wants to? She could spend hours reading or playing video games!”

As Gina explains, ADHD’s core challenge is not so much paying attention as it is controlling attention. Psychologist Russell Barkley states that “ADHD is really not so much a disorder of attention as it is a disorder of self-regulation.”

Gina points out that recent brain science discoveries have indicated that ADHD affects specific brain areas—areas that release certain brain chemicals that arouse and maintain attention until goals are met. In people with ADHD, those areas require higher-than-average stimulation in order to trigger interest, maintain the interest, and end the interest at appropriate times. “That’s why one psychiatrist calls ADHD, the Search for Stimulation syndrome.”

Search for Stimulation Syndrome

This is a grossly simplified explanation, she reminds, and nothing about ADHD is simple.

But guess what can help stimulate those under-active brain areas? (Prepare yourself for a massive eye-roll here…)

  • Fast driving!
  • Spending money!
  • Smoking!
  • Picking fights!
  • Eating junk food!
  • Jumping out of airplanes!
  • Being the Life of the Party!
  • Whipping into a workaholic frenzy! “

These activities produce initial feelings of focus, and a paradoxical inner calm. Over time, however, over-the-top stimulation typically makes everything worse.

The question that follows naturally:

“Does this mean my partner gets the stimulating fun tasks, but I get all the drudgery?”

Good question! This came up over and over again in our own lives: Is my role in our marriage just to be the janitor who cleans up all the messes my husband makes? Not at all.

But understanding why these disparities exist marks the first step toward rectifying them.

The act of “trying harder” can sometimes even make things worse, thanks to a particular glitch in the ADHD brain, which is explained as being related to glucose flow to the brain, at least in part.

So, you mean that when we cried, yelled, or accused our partner of not caring, they literally could have made their symptoms worse by “trying harder?”

Imagine how much pain we’ve all lived in—thanks to our own and/or our partner’s ADHD—when we believed that our partners simply didn’t care, or weren’t mature enough, to tend to all the variables in our relationship and our adult life.

Or that the same was thought of us.

Other Issues Covered in This Chapter:

  • My Partner Has Lots of Attention—for Some Things!
  • Isn’t There a Genetic Link with ADHD?
  • My Partner is Consistent—at Being Inconsistent!
  •  So My Partner Can’t “Try Harder” to Pay Attention?
  • But What is ADHD Exactly? A Disease? A Disorder?
  • My Partner Gets the Fun, and I Get the Drudgery?
  • Maybe My Partner Just Needs to Grow Up
  • What about Medication?

Discussion points:

  • Which question resonated most for you?
  •  Which answer surprised you the most?
  • Did you find the Question and Answer technique helpful, as opposed to a running narrative?
  • What was the hardest part of living with undiagnosed ADHD? 

The Book Club is always open. Join the discussion with a comment below.
—Gina Pera

Here is a hyperlinked list of all the essays in this book club series:

Book Introduction                                                                                                                   

Part One 

From the Tunnel of Love to the Roller Coaster: Could Your Partner Have ADHD?

Section Introduction

1    Who Has a Ticket to Ride? Spotting ADHD’s Surprising Signs

2    Laying the Track’s Foundation: What Is ADHD, Anyway?

3    Deconstructing Your Coaster: Why Each Is Unique

4    Financial Loop-the-Loops: “It’s Only Money, Honey!”

5    Driving While Distracted: The Roller Coaster Hits the Road

6    Peaks and Valleys: ADHD in the Bedroom

7    More Mystifying Twists and Turns

Part TWO

Roller Coaster Whiplash and G-Force Confusion: How Many Plunges Before You Say, “Whoa!”

Section Introduction

8    First Plunge: Explaining the Inexplicable

9    Second Plunge: Managing the Unmanageable

10  Third Plunge: Breaking Down in Illness—Or Through to Truth

Part THREE

Your Relationship and the Art of Roller Coaster Maintenance: Four Success Strategies

Section Introduction

Success Strategy #1: Taking Care of Yourself

Introduction: The Amusement Park’s Emergency Room

11  Strategies for Right Now

12  Solving ADHD’s Double Whammy

Success Strategy #2: Dealing With Denial

Introduction: Roller Coaster? What Roller Coaster?

13  Psychological Denial: The FEAR Factor

14  Biological Denial: Not Unwilling to See—Just Unable

15  New Ways to Broach “The Conversation”

16  More Solutions and Strategies

Success Strategy #3: Finding Effective Therapy

Introduction: Calling in a Consultant to Help Retrofit Your Ride

17  Why the Wrong Therapy Is Worse Than No Therapy

18  Therapy That Works for ADHD

19  More Solutions and Strategies

Success Strategy #4: Understanding Medication’s Role

Introduction: Tightening the Brakes on the Roller Coaster

20  Making Connections Between Brain and Behavior

This post from Jaclyn at The ADHD Homestead touches on a range of issues within this section on medication

21  Rx: Treatment Results That Last

22  Maximizing Lifestyle Choices, Minimizing Rx Side Effects

23 Catch Your Breath and Take Five

Appendix A:

Adult ADHD Evaluation and Diagnosis

Appendix B:

“But I Heard That…”: More Background for the Unconvinced

Appendix C:

Three Views from Decades on the ADHD Roller Coaster

Resources

Endnotes

Index

 

19 thoughts on “Chapter 2: Living With Undiagnosed Adult ADHD”

  1. A few other thoughts….

    The genetic component is scary. I am worried for my kids.

    Under Q: Maybe My Partner Just Needs to Grow Up, you talk abut how many symptoms reflect an inability to stop undesirable behavior. This is so so so so so true! I see this manifest in so many ways in my partner.

    I’m wrestling with excusing the behavior because I know the root cause (it’s not his fault??) but also wanting him to take some personal responsibility. It’s hard.

    1. Hi Deb,

      Yes, the neurogenetics are a fact. But here’s the thing: Kids who grow up informed about their ADHD, and having access to proper treatment and strategies, are much less likely to get bogged down in the “emotional baggage” that comes with the late-in-life diagnosis.

      And yes, yes, yes…the partners can find themselves in that “no man’s land” of feeling the brunt of ADHD-related problematic behaviors while also knowing they have a neurobiological underpinning.

      It takes some tight-rope walking, especially in the beginning. But I think it’s important to emphasize the importance of optimizing treatment strategies. Always excusing the behavior is a setup for it continuing, helping no one really—you or your partner. For the good of everyone, I recommend working together on education AND treatment strategies.

      best,
      g

  2. The topic Q: My Partner Has Lots of Attention—for Some Things! resonated with me most. The line about the partner w/ADHD doing stimulating activities when they should be doing boring things like chores….I feel like I am destined for a life of servitude. I clean up all the messes. I take care of all the details if our life. Some days I am resigned to it and some days I resent it. One thing I do know is that I cannot sustain it.

    We bought a new Play Station recently and you can guess how that is working out. Someone has been engaging in plenty of stimulating activity.

    I like the Q&A format!

  3. I will admit that this chapter made me cry. It made me fear that my future life would be full of my recently-diagnosed husband ending arguments with “It’s not my fault, I have ADHD, can’t you be more understanding?”, and me being unable to ask him to try harder for fear of making things worse. At least your book underlines that although ADHD explains certain behaviors, it does not necessarily excuse them. There may yet be hope, especially if medication works 🙂

    In the meantime, my husband is trying to convince me that I have ADHD too. When I pointed out that wanting to always be right is a frequent symptom, for instance, he turned it right back saying that I am the one who always wants to be right. He doesn’t see it in him, even though he knows he has ADHD. I guess that’s his form of denial! Thank you for mentioning it in your book: he may not accept it, but it is reassuring for me to know…

    1. Hi S.

      Thank you for your comment. It’s an important issue you bring up.

      Many years ago, when we were just beginning to consider an evaluation for my husband’s potential ADHD, he said, “Yes, I’ll go for an evaluation. But you need to be evaluated, too!”

      I knew, in my bones, that his behavior was “off” and that he wasn’t seeing the big picture (though, at that time, I didn’t understand why).

      But I said, “Okay! I’ll definitely go for an evaluation. Because something is definitely wrong with me if I’m sticking around for THIS misery!” 🙂

      At the evaluation, he was diagnosed with ADHD, and I was diagnosed as “a complex person.” Whatever THAT means. 🙂

      I was also “prescribed” for my husband, to be a sort of executive secretary and helper. Seriously? What about my life? My stress? What about better treatments for him (the Adderall was making him mean as a snake)? Was this really as good as it was going to get?

      This was all nuts. What a mess. Someone needed to straight out this situation on a large-scale basis.

      Thus was launched my advocacy. 🙂

      Please check out the LEAP strategy in the book. It will be a few weeks before we get to it here (and might not cover it specifically). It sounds like your husband is using the “you have ADHD, too” weapon to derail his own responsibility for getting treatment.

      Good luck!
      g

  4. As far as denial and not coming up with a standard “training”, coping system, for remembering not to forget things. My biggest problem is finding one that works well in one scenario such as a job, that doesn’t work well in another. It is extremely hard for me to use a pocket notebook in a work site job, use a leather binder in a suit job or situation, and/or an IPhone, in some and not other situations, and then remember to put reminders from one situation to another. Each format requires, for me, a different “framework of mind” and sometimes systems are situationally not compatible. I tried an organizing coach once, and it seemed helpful, but I eventually shifted back to how I was doing things because that is the only way I could put some things out of mind to deal with others because I knew, even if difficult, I was able to back track what I did without trying to remember what she had me do.
    Does it make sense to others, or even me? Sometimes, but if it comes to me knowing what I did when, ….Never mind. I just know, that once I figure out how things work best in one track of the Roller Coaster, I get on a different track and start over from scratch with everything. My hole is deep enough now, so enough said. “Yeah but”, “yeah but”, etc…

    1. Hey Paul,

      So you are not really in the throes of “denial” but rather overwhelmed by the plethora of organizational options.

      Maybe it’s time to revisit the issue, this time consulting an efficiency expert who can accommodate your concerns and still help you fix upon a strategy that works well for most situations.

      Some professional organizers specialize in this, including my friend Holly Graff. Here is her website:

      http://www.cluttercontrolangels.com/

      Gina

    2. Paul, I think I understand what you’re saying. In your situation, it’s okay to make mistakes and say, “Okay, that scenario didn’t work for the switch between job and personal life *this week*, so let’s try something again next week.” The important part is not to give up–we will find the right options if we keep looking. Have you ever read the book “ADD friendly ways to organize your life?” It’s very, very useful for transitions and getting to the *heart* of what you need in a system. 🙂

  5. I find that one of the biggest issues with my boyfriend’s ADHD isn’t that he forgets things or has selective focus and attention, but that he forgets that he forgets things. As in, he won’t / can’t fully own that part of his brain and come up with workaround solutions (i.e., “I know I always forget stuff, so I’m going to keep a list and check items off as I go along,” or “I know I always overreact to things, so I’m going to take a deep breath and count to 10 before I open my mouth and say something hurtful.”). Instead, he says, “I don’t need to do anything special, I’ll remember to take care of X.” And, then, of course, he doesn’t. It would be like me insisting that *tomorrow* I will sing like a professional opera singer . . . when I can’t carry a tune and have never had a singing lesson in my life. It’s living a delusion instead of being in reality.

    1. Great example, Persephone. And way more common than you might imagine, perhaps moreso with men who have ADHD than with women. Even among “smart” people.

      There’s a reason I devoted several chapters to “denial” in my book—the first book on ADHD to do so or to even talk about the topic seriously at all.

      best,
      g

  6. Richard Flynn

    Hi Gina
    I am a 70 year old veteran and have been treated for PTSD and accompanying depression for 20 years now. Before that I was treated for an assortment of diagnoses until someone decided on PTSD.
    I have a pretty good handle on PTSD and depression, and I no longer drink, however, I have no doubt I still suffer from undiagnosed ADHD. My military Dr. disagrees because I have no history of symptoms “on record “.
    Is there some way I can convince my doctor? If not, would it be kosher to seek medication elsewhere?

    1. Hi Richard,

      So, if the VA has missed diagnosing your ADHD prior to now, it won’t diagnose now. Because it missed it previously. Nice logic.

      The fact is that people with ADHD are more vulnerable to developing PTSD, and it should be a factor in treatment.

      It sounds like you’ve worked hard to overcome the PTSD and depression, and kudos on staying sober. But how much easier, better life might be if that final piece, ADHD, were addressed.

      I’ve heard from many people that the VA doesn’t treat ADHD. I cannot document that, but I’ve heard it often enough. So, it might be a losing battle trying to get through to your VA doc.

      Amazingly, some institutions decide not to treat ADHD and that’s their policy. For a long time, with Kaiser-Permanente here in Northern California, Adult ADHD was “not a priority.” More recently, I’ve heard that a large network, the Palo Alto Medical Foundation, has decided not to treat ADHD. Along with the adult psychiatric clinic at Stanford.

      Yes, it’s crazy. And it’s wrong. Can you imagine a medical clinic saying they wouldn’t treat high blood pressure or diabetes?

      At any rate, I definitely would seek an outside medical counsel.

      Do you have my book? Read the back for information on how the evaluation should go. Also check out the diagnostic criteria. Write down some bullet points about how ADHD might have been present in your life, from childhood on.

      The more organized your presentation, the better. Docs like reading material to be short and sweet!

      Do you live in an area where you might be able to find a competent ADHD specialist?

      Good luck!
      g

    2. Richard,

      My boyfriend gets his healthcare from the VA. We told them he had ADHD, instead of waiting for them to diagnose him. I went on an appointment with him to whomever his assigned psychiatrist was at the time and just flat-out said, “Boyfriend has ADHD and we need to get him started on meds. I’d like to try Ritalin first, is that possible?” And it was. (Well, a generic version). Maybe we just got lucky with that one doctor, but it might be worth a shot. Or get diagnosed by a private doctor, get your first prescription from them, and then take that to your VA psychiatrist and ask them for a refill.

    3. Great idea, Persephone. It might work.

      From what I understand, military bases (even within the same branch) vary highly in their acknowledgement of and treatment for ADHD. Perhaps it is the same with VA clinics.

      g

  7. Funny thing is that I *knew* (pre-diagnosis) that my husband did care and cared deeply. Why was he unable to stop himself from doing some things and why couldn’t he see the potential consequences of some of his actions?

    It’s like two parts of his brain failed to communicate with each other. One part (I’m guessing the executive part) was slow, foggy and latched onto interests to the exclusion of all else.

    The other part was quick to fire into anger, rage, depression, hopelessness.

    He was constantly talking about trying to “understand” his emotions, which seemed a really odd statement then, but makes sense now.

    Even medicated, his balance can be precarious.

    Yes, I get the drudgery, but he’s *not* having fun with this. He doesn’t have the “H”, so his main source of stimulation is computer games and other electronic gadgets. He is actually afraid of money and we keep our finances separate.

    What has worked well for us is not staying mad at each other as much as possible. We both realize each other’s shortcomings and are quick to forgive….and the fact that he forgets things easily helps too (LOL). He may not remember our anniversary or that it’s time to buy Christmas gifts, but I do not doubt his love for me and when it comes right down to it, gifts and cards are nothing compared to true caring love.

    1. Thanks for your comment, Penny. I agree, in valuing the “showy displays” less than the real thing. You are a special person.

      g

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