Yeah, this is me. Your mileage may vary. ADD is a spectrum disorder, which means some people might not even know they have it, and others will never do well at supporting or caring for themselves. It rarely travels alone, so you’ll find a lot of ADDers who are depressed or bipolar, have dyslexia, dysgraphia, dyscalcula, or even autism spectrum disorder. It’s also a collection of symptoms that are divided into hyperactivity, inattention, and impulsivity. You need to have at least six of the symptoms in two or more of the categories, and it has to be disabling in two or more environments. Depending on the distribution, you can be ADHD (hyperactive), ADD-PI (primarily inattentive) or ADD-C (combined – neither primarily hyperactive nor primarily inattentive.) So we’re not all the same, but no matter what, it’s no walk in the park.
Children nowadays get diagnosed early enough that they can be helped behaviorally and/or pharmaceutically, but most of us in the over-30 age group made a lot of mistakes, failed at tons of things, lost friends and spouses and jobs, and couldn’t figure out why or how to stop doing it all over again. Because when we were young, if we were diagnosed at all, the whole of the problem was being hyperactive, and the accepted wisdom was that we’d outgrow it. All the other stuff that we now know is integral to ADD, for us, was character flaws. Lots of emotional baggage. So it’s a good thing to know how and why you’re different so you can figure out what you can and can’t change, and stop beating yourself up when you fail at trying to change that second one all the time.
It’s really hard to explain what it’s like to live with an ADD brain for a lot of reasons. If you have ADD, you lose count of all the times you’ve tried and been told things like “oh, everyone loses their keys,” or “that’s just an excuse for being lazy.” If you live with someone who has ADD, it can drive you nuts when it seems like you’re speaking a different language to each other and everything’s in constant chaos.
So I’m going to explain what it’s like for me, and a few things that make it easier to be like me or live with someone like me. More below the fold.
1. Brain Chatter!
There is no such thing as silence. I am thinking a minimum of three different trains of thought simultaneously, along with at least one repetitive loop of music. These trains don’t stay on track, either. I’m trying to organize my day or remember what I’m supposed to get done, but I’m also reliving a 10 year old argument as if I had won it instead of saying the stupid thing I actually said, designing a craft project like one I just saw somewhere, trying to remember what I was doing the last time I saw something I lost, replaying a scene from a movie I saw last night, thinking about what I would say to someone the next time I saw her, and so on. They’re all at the same volume, and I can’t turn the knobs. Just when I think I have a handle on which one is the most important, another thought butts in and screams “me! Me!!!!!”
So what does this mean in real life?
For one thing, it’s so hard to capture that one elusive important thought that I hate being interrupted. I might even go ballistic if the thought was particularly elusive or important, because finding it again is darned near impossible. Imagine you drove to seven different stores in two days to find one unique screw to fix something that you needed to finish an important job. Finally! You go to get the screwdriver, and come back to find that someone threw the screw into the back of the junk drawer with all the other miscellaneous screws. They all look the same, so you’re going to have to try them one at a time now until you find the one you already spent so much time looking for. It’s like that. I’ve learned, and taught my family, that when I hold up one finger and don’t make eye contact, it means I have a tentative hold on a thought, and they need to wait until I’ve grabbed onto it good and tight (or written it down!)
Along the same lines, and ironically as well, I do a lot of interrupting. It’s caused by the same thing. Thoughts are so jumbled up and fast-moving that if I think of something, I have to speak it while it’s in my head, or it may be gone forever. Sometimes it’s urgent, sometimes I’m using other people like post-it notes (I’m telling you so that you can remember when I forget) but I’m not doing it to annoy anyone, and I’m not doing it because I’m inconsiderate or ill-mannered. It’s either say it now or risk not remembering it when I need to. That sense of urgency doesn’t limit itself to important things alone, though. Saying it while I’m thinking of it is such an important coping tool that it carries over everywhere. One of the benefits of the right medication, for me, is that I’m better able to distinguish between thoughts that need immediate expression and those I can hold off on until there’s a conversational break. I still have to say the important stuff right away, though – medication doesn’t make it any easier to find elusive thoughts. Letting people know this helps me be a little less annoying to them.
2. Variations in Focus
“Attention Deficit” is really a misnomer. I pay attention to more things in an hour than most people do in a week. I just don’t get to choose what I can pay attention to. You might see me standing and staring into space because I’m totally absorbed in a particularly engaging thought. On the other hand, I might look lost in thought but actually be lost among a forest of thoughts. Whether I’m absorbed in one or overwhelmed by many, my attention is completely inward. I might not be staring, either. I might be working feverishly on something, or talking through a problem or idea (it may seem like we’re both talking about it, but really, I’m working alone. . .) but I’m still not in the real world at that moment.
It goes beyond being odd and into driving everyone around me nuts, though, when you try to engage me. You’ll say something to me, and maybe I won’t respond. I won’t look up, or stop talking, or whatever, and if I do somehow manage to respond to you, my response will likely be inappropriate. It’s not that I don’t want to listen to you or pay attention to you, but when I’m stuck in this mode of focus, I simply can’t snap out of it. Sometimes I’m so completely unaware of what’s going on around me, I’m not even aware of hunger or pain or a full bladder, so if you just start talking, I won’t pick up on it. If you have to deal with this all the time, and you don’t understand that it’s not intentional or controllable, you’re going to get pretty tired of it. Believe me, I don’t like hearing “You never listen to me!” any more than you like to say it.
Again, setting up some kind of a signal is helpful to everyone. For me, sounds are very, very not good. If you start talking to me before I can see you, my startle reflex kicks in, big-time. You’ll get my attention, but I won’t be listening because I’m in fight or flight mode. I might look up when you move into my field of vision, you may have to wave or try looking into my face after you’re in range, but if you make sure that I’ve stopped thinkingthinkingthinking and am looking at you before you start talking, I’ll be listening. Just to be fair, if you want some kind of signal to let me know that you’re ready to listen, I’ll work hard to remember it. If we agreed beforehand and I forget, I won’t get upset about you reminding me what we agreed on.
3. Sensory and Sleep issues
Not everyone has these, but very few people with ADD don’t have at least one. You know how uncomfortable a wool sweater or its itchy tag can be? Imagine how much worse it would be if you had to wear it while chained to a wall in a three foot square room that was heated to 80 degrees. Sensory overload is frequently easily triggered when you have ADD. It may be related to only one sense, it might even be limited to only one or two triggers within that sense, but when it comes to that thing, there’s no such thing as mild discomfort. Certain sounds can drive me stark raving mad. Ask my husband or any of my former roommates. It’s not pretty. Clothing that fits slightly differently on one side from the other, and wrinkled fabric against my skin is intolerable. Confronted with these, I’m incapable of ignoring them, and simply can’t function or even think of anything but the discomfort they cause me.
Sleep is difficult enough when you have a brain that never stops. It’s like trying to fall asleep in a sports bar. Throw in a difficult sensory issue, and sometimes you’re lucky if you sleep at all. I’ve been an insomniac from day one. I got thrown out of a dance class when I was eight because I couldn’t stop yawning, and the teacher was insulted by my “boredom.” While I don’t have any visual issues, I’m extremely sensitive to changes in light. So I lie down to sleep, and my brain takes advantage of the quiet and dark to shift into hyperdrive. Throw in someone talking or music playing, or someone nearby snoring or breathing loudly, and that’s it for me. That is, of course, after I’ve finally managed to get my nightclothes, sheets, and covers arranged so nothing feels uneven. If a light manages to show through a curtain or around a door, it’s just the ultimate proof that the universe is plotting against me.
So I have to have a fan going to provide white noise. I’m going to flop around until nothing touching me feels too much different from my right side to my left. I wear a stretchy headband like a blindfold so I can’t see any light. I need to take a pill, and it’s best if I go to bed first so I don’t get pissy that everyone else laid down and fell asleep like it was easy. It’s a pain to put up with sleeping in the same room with me when everything has to be so particular, but it’s probably better than dealing with me after a week of 2-4 hours’ sleep a night. It’s no picnic for me, either.
4. Clutter and Organization
This is a really paradoxical thing. Clutter makes me nuts – it’s visually distracting, it adds to my tendency to lose everything I need, and creates even more anxiety about my time-management difficulties. However, it’s natural for me to clutter, because I have so many things going at once that I’ll put things down instead of putting them away, or start doing something and stop before it’s done (time management here, too, since I’ll start something without any idea how long it’s going to take relative to the time I have to do it) and leave it without cleaning up (because maybe this time I’ll remember to go back and finish it. . .) This is something that has gotten worse with age as I’ve added more living space, more family members, and more responsibilities to keep track of. When I was a kid at home, my room was the neatest in the house, because it was easy to keep order in one room with fewer responsibilities and only myself to keep track of.
I really crave order. In fact, a lot of messes I make come from my endless organizing projects. I can spend days taking everything out of an area, setting up the storage, and putting things back in a sensible, neat system, only to come home with some new things I didn’t leave space for, or start using the things, get interrupted before I’m done with them, and leave them spread out all over rather than putting them away. I know it drives you nuts, but believe me, it’s worse for me. I want it to be neat just as much as you do, but I have the added frustration of knowing darn well that it’s all my fault – and that it’s yet another example of how I fail as a human being. No matter how hard I try, I keep doing the same thing over and over, because the part of my brain that controls it just doesn’t work right.
At the same time, sometimes there are pockets of successful organization. Here and there, they’ll make sense to you, too, which really helps in the grand scheme of things. I’ve found that things that can be stored in the same size and shape containers and be alphabetized are particularly successful for me. My spices take up two kitchen shelves because I’m a foodie, but I rigged up a raised circular center on a couple of lazy susans so the label on the bottles in the center are readable above the tops of the bottles on the edge, bought enough identical bottles to hold them all, and arranged them alphabetically. CDs work the same way. Once we had enough of the right size shelf in the same place, and got them alphabetical by artist name, they’ve stayed neat, and there was enough space to add more, which has kept them that way.
That’s where it stops making sense to the rest of the family. I’ll do something like put quinoa on the really crowded shelf, and someone will move it to a shelf where there’s room for it so they can get to the rice. They won’t put it back, because it makes sense to them to put it where there’s space for it. They can leave it front and center of the other shelf, and I won’t be able to find it to save my life, because I put it on the “grain” shelf, and since it’s not a pasta, I can’t even conceive of it being on the pasta shelf. I’ll look in the fridge and cabinets to make a shopping list and come home with a jar of mustard that we already have because someone moved it to a shelf where it fit, instead of where it was jammed in tight with the other mustards, but my eye goes only to the space where the other mustards are. In my mind, all the mustards have to be together, so if it’s not there, it doesn’t occur to me that it could be somewhere else.
Because I make it so complicated for myself, “cleaning up” is sometimes a really mentally daunting task. The mess may have too many “categories” to organize. My distorted sense of time tells me I can’t possibly do it in the 7 hours I have until whatever is coming in 7 hours. Just looking at the mess, much less cleaning it, reminds me of what a failure I am because I created it and let it get to this point. The fear that I’ll get interrupted at the point where it’s even more of a mess and not be able to get back and finish it is so strong that I need an incredible burst of willpower to even think of starting it.
I’m afraid to ask for help, because I don’t trust myself to make sure it’s finished, even with help. I’m afraid that it’ll be done “wrong” somehow and I’ll have to wait for my helper to be out of the way and undo and redo it. I’m afraid that when (not if) I mess it up again, the person who helped me is going to be angry with me.
I want things to be neat. I want things to be neat. I desperately crave an orderly, organized environment. I just don’t possess the executive function or attentiveness to do it.
5. Associative Memory
This is the ADD version of mnemonics. It will make no sense to you. It doesn’t make a lot of sense to me, either, but it works either really well or almost not at all. As I said earlier, I’m paying attention to a ton of stuff. My stimulus-craving brain is both consciously and unconsciously absorbing information like a sponge. Everything gets filed away, but the filing system is both convoluted and specific.
I can see a color I like, and it will remind me immediately of other things that are that same color, one of those things will remind me of the place where I saw it, which will remind me of where I was living at the time, which will remind me of a party I gave there, which will remind me of someone who lived in the building who came to the party, which will remind me that I ran into her on the street several months ago and she told me she had gotten married last year. (I’m also simultaneously remembering a couple of other memories the color triggered, just to let you know.)
What I say to you is “That car is a fabulous color! Hey, did I tell you that Phyllis got married?”
This works great at parties, because people are always saying things that in this winding, twisty, but extremely rapid process bring back funny jokes and interesting stories I’d completely forgotten until just that moment.
In reverse, it’s not so good. If I were to map out these memory paths, it would look a lot like a few hundred drunken spiders’ webs in a small box. I lose words and names all the time because the search begins with “it starts with the letter. . .” I have a huge vocabulary and know a lot of people, so this doesn’t help much at all at narrowing it down. With names, the mental path is a lot shorter, and you might know the person about whom I’m thinking, so if you make suggestions while I’m trying to remember, you might just hit the right one. With words, though. . .oh, man, just be patient. I’ll say “It means this and it starts with this letter,” and that’s how I’m trying to trigger my brain to find the right pathway. When you start suggesting other words, not only are you pushing me away from the pathway I’m seeking, but you open up new ones. All you’re saying is “erudite?” but my brain takes that and runs with it. . .erudite. . .Bob from college. . .Dungeons and Dragons in the Student Center. . .that weird couple that showed up in costume to play. . .they played that assassin LARP. . .Photon in Kenilworth was fun. . .the guy I dated from there was such a jerk. . .
And it’s gone. If I do remember it, it’ll be when I wake up sometime in the middle of the night.
When I’m with friends or family talking about something that happened in the past that we shared, I’ll have absolutely no recall of it until someone says something that reminds me of something that puts me on the right memory path. If that memory path branches off, they need to remind me of something else. This process repeats until either the memory pops into my head in full-screen living color, or we just have to give up. If the associations that lead to the memory are few, or the associations at the beginning of the memory path are too numerous, it’ll be next to impossible to access the memory I’m looking for.
If you have a loved one with ADD, this is kind of important to know. Your ADDer might not even be able to express that his or her memory works like this, but will read this and have an “aha!” moment. You need to talk about how to tell when to try to help him/her remember, and when to wait until he/she figures it out.
6. It only looks like OCD
There are a lot of routines I’ve developed that might look like obsessive-compulsive behaviors to an observer. Some people who have ADD have OCD as well, but that doesn’t mean we all do. For those of us who don’t, it’s really just another type of mnemonic. We create routines for certain things to compensate for our distractability and memory problems. It’s taken me more than 30 years to learn to put my glasses in a specific place so I can find them again. I do everything in the same order when I shower, because if I don’t, I step out with conditioner still in my hair or only one leg shaved or something like that. I struggle with the idea of washing the kitchen floor without having washed the cabinet fronts first, because the “rule” is to clean from the top down. I need the routines so I don’t forget to do things, and it’s pretty much a guarantee that if the routine is interrupted, the things that fall after that interruption on the list don’t get done (except cleaning the cat boxes – smell is an excellent reminder!) When it works, it’s great, but because it’s a set pattern, it’s hard to be flexible. It’s another memory path, but a reliable one. However, as a memory path, it relies on those associations. Break one, and the rest of the path gets completely lost.
A popular misconception is that people with ADD are all intelligent and creative. In reality, we’re just as likely to be intelligent and/or creative as everyone else in the world who doesn’t have ADD. The problem is, though, that regardless of whatever strengths we may have, the people around us have criticized us for not living up to our potential our entire lives. If you are creative or intelligent, the disparity between your potential and your achievements is even more obvious. No matter how hard you work or how well you think you did, there’s always someone telling you how much better you could have done if only you had tried harder.
Well, we try harder than you could possibly imagine. Something that doesn’t interest us (or doesn’t trigger an association with something that interests us) is painfully difficult to focus on. Our brains crave constant stimulation, and if we’re not getting it, they create their own. If you’re doing homework in a subject that gives you difficulty, or performing a boring task, your brain gets busier and busier to make up for the lack of stimulation. That makes it even harder to concentrate on the task at hand. You find yourself stopping or even walking away without conscious realization, to think about or do something that’s more interesting, and have to wrestle yourself away from it and start the task again – sometimes not from where you left off, but all the way back to the beginning.
Homework your non-ADD sibling finished in half an hour can take you four. Doing something dull at work takes so much time that other important tasks don’t get done. You put things off until the 11th hour because the pressure of a deadline is absolutely the only thing that will allow you to focus exclusively.
As bad as it is to be told regularly that you’ve fallen short, hearing “if you only tried harder” after you’ve put in a monumental, time-consuming effort to get something done is devastating. I was up until 2AM for three days trying to get this done. . .how much harder am I supposed to try?
If you do have a particular aptitude, one of the few ways to actually develop it is to focus on it exclusively. If you can spend hours of uninterrupted time researching, trying new ideas and methods, making mistakes and learning from them, you can accomplish great things. However, the world doesn’t work like that. We learn by doing, which takes a lot more time than learning by being taught. Real life takes out huge chunks of that learning time, and breaks it into pieces that are sometimes so small that they’re useless. We could live up to our potential if we were allowed to decide for ourselves what that is and have the time to work towards it. When our potential is determined by other people and our time is scheduled from outside, it guarantees that we’ll never live up to expectations.
We try hard and are told we need to try harder. We think we do something well and are told we could do better. We need to sit still and concentrate. We need to stop saying everything that pops into our heads. We’d be able to find what we needed if we just put it where it belongs. This or that is so easy, why don’t you remember it? Could you try being on time for once? You’re such a slob! You need to learn to prioritize! I’ve asked you three times already! You spend hours doing such-and-such, why can’t you take five minutes to do what you’re supposed to? Why don’t you pay attention for once?
The things for which we’re criticized are the very things that are integral to having ADD. We try very hard to change them, but we simply can’t because it’s contrary to the structure and function of our brains. Each time we hear these admonitions, each time we try and fail to change, each thing that simply reinforces our feeling that we just can’t do anything right, chips away at our self-esteem. Decades later, we don’t like ourselves all that much, and sometimes end up not doing anything well.
That’s why it’s important to understand what ADD is and how it affects the individual who has it. If you’re the ADDer, you can get a handle on what things you can change, and what you can’t, and focus on developing working skills and strategies instead of trying and failing one thing after another. If you have an ADDer in your life, understanding how it affects your loved one can lessen your frustration, improve communication, and find ways to work together to reach the best realistic outcomes.
As I said, YMMV. The list of criteria for diagnosis is here. It’s written for childhood diagnosis, but you can see similarities in your adult symptoms. There are a couple of particularly good books for information about adult ADD, “Driven to Distraction” by Hallowell and Ratey, and “You Mean I’m Not Lazy, Stupid, or Crazy?” by Kelley and Ramundo.