By now, I’m sure many of you have heard the lecture on ADHD made by Dr. Russell A Barkley PhD, or you’ve at least seen some excerpts. If you haven’t heard the whole thing, you should, especially if you or someone in your life has ADHD. It is a very good lecture, it makes me as someone with ADHD feel incredibly seen and acknowledged. It’s amazing, really, here’s this man who’s never met me, speaking of my life, my struggles, my childhood, which such insight you’d think he’s been shadowing me for decades. Of course, he hasn’t, he’s just delivering this lecture based on his knowledge and understanding about this disability.
And there is where you find the problem. For someone with ADHD, Dr. Barkley’s lecture is fascinating and enlightening and validating, but more important than any of that; the lecture is heartbreaking.
Here is a medical professional, speaking on my disability and problems so eloquently and with such insight, and yet… I have so far never encountered a medical professional who understands this diagnosis the way Dr. Barkley does. He gave this lecture in 2009. That is thirteen years ago. Three years before I got my own diagnosis.
It would have been wonderful to have had this diagnosis as a small child, but I understand and accept that that was never feasible. We didn’t know enough about neurodevelopmental disorders back then. That’s fine. Awful and horrible and another type of heartbreaking for those of us who suffered our entire childhoods and well into adulthood or longer without help. But fine.
However, it’s been thirteen years since that lecture. Thirteen years. Enough time for the research it’s based on to spread in the medical community, enough time for “treatment” techniques to change and adapt to new information. My experience is that nothing has improved. Over the past ten years I’ve had this diagnosis, I’ve yet to meet a single medical professional who comes even close to the level of understanding that Dr. Barkley shows in his lecture.
No medical professional has ever called me lazy, or stupid, but there is and has always been one single goal with my “treatment”. One goal that is unspoken but clear. Fix it.
Everything is built around there being some sort of magical fix to my inability to focus, to follow through, to plan ahead, to juggle details, to juggle responsibilities and adulthood and life. That fix is Just Do It.
I have sat in one-on-one sessions, in group sessions, at home with independent study material and all versions are the same. You must find a way to live life the way neurotypical people do. Here’s an exercise.
I have been told to meditate because studies show it improves the ability to focus and heals the frontal lobe. Never mind my complete inability to do that because I CANNOT CHOOSE WHAT TO FOCUS ON. There is no plausible or conceivable scenario where I can empty my mind or imagine my thoughts floating past on clouds. And of course my failure is met with professionally restrained frustration, because if I just do it, I will be fixed.
I have binders upon binders filled with sheafs of paper; copies of exercises from some book or booklet my various doctors have had on their shelves. The exercises all boil down to the exact same thing. What do you have a problem doing? What could someone do to mitigate this problem? Great! Do that.
Having trouble remembering appointments? Set an alarm on your phone. With reminders!
Having trouble keeping your home clean and organized? Make a schedule for doing chores. With reminders on your phone!
Having trouble staying in one place to do one thing, always wandering off chasing other thoughts? Make a schedule! Remind yourself what you should be doing! And then stick to doing that!
It’s ALL designed around the idea that neurodivergent people just haven’t realized that they can do things if they just… you know… do them.
Trying to explain that the reminders only help if I act on them and don’t just switch them off was always met with confusion or frustration. You can’t just turn them off, the point is to just do it! Trying to explain that I can’t just remind myself what I’m doing, I can’t stick to things. I can’t use terrible future consequences as a motivator. There are zero consequences for me to just turn off the reminder. The terrible future consequences are not related to my ignoring a reminder. They will never be related. That’s not how this works.
When I was in group therapy, one of us said she had such a hard time keeping up with the house chores. Cleaning, tidying, laundry, dishes. She described the overwhelming exhaustion I know so well, the avoidance, the guilt, the shame. She had three young children to boot. She told the group that she and her husband were considering hiring a cleaning service, because it was just too overwhelming. Too overwhelming for her to handle her portion of the housework, too overwhelming for her husband to take on all or parts of her workload, too overwhelming for the children to have a parent who’s constantly drained, exhausted, and filled to the brim with shame and guilt. That it would be a big financial burden for the family, but the alternative would be a bigger burden in the long run.
All of us patients in that group agreed with her. Told her it was the right thing to do, said we’d do the same if we could afford it. Said she didn’t have cause to feel shame, we understood her completely. We talked about how this is such a common problem that there should be some service available, something a doctor can write a prescription for, and then the patient is free to live a functional life.
The psychologist who ran the group didn’t agree. This was the opposite of what the exercises were trying to accomplish! We were supposed to learn to do it OURSELVES.
Another member of the group struggled immensely with “paperwork”. He was in his fifties and anything even remotely related to paperwork filled him with dread and anguish. Bills went unpaid. Appointments were missed. Insurances expired. He wouldn’t even open the envelopes, just tossed them in a drawer or in the trash and ignored their existence. He thought the aversion (let’s call it what it really is; phobia) came from the homework he had to do as a child. Always so much, always overwhelmed, always impossible to understand or complete. And always resulted in angry teachers and parents. So now he was stuck with a complete inability to handle one of the most crucial parts of adulthood. He told us a friend had offered to do it all for him. That she had seen how he struggled, how strong his emotional response to the thing was, how deeply negatively it all affected his life, and she offered to help. She would deal with all the paperwork, and in turn he would help her with things he was good at like fixing broken things, heavy lifting, an extra set of hands when needed.
He was giving the group good news, not asking advice or permission. You could tell that a huge weight had been lifted from his shoulders and he felt so much more free and independent. We all congratulated him, encouraged him, talked about how it was a good solution. Regardless of if it’s in a marriage or a friendship, people can compensate for each other’s weaknesses like this. Though, we also agreed that there should be some kind of service available for people with this problem, that a doctor can write some kind of prescription for so you’ll have the help you need to live a functional life.
The psychologist who ran the group was appalled. Not only did this go against the point of the exercises, he was creating an unhealthy codependent relationship. What would he do when she didn’t want to help anymore? When she moved on with her life? No, he needed to learn to do this himself. My friend’s shoulders were slumped and his head bent at the end of that session.
I’ve moved on from the group therapies and the one-on-one sessions now. It’s been ten years since my diagnosis and the only thing I find to have a consistent positive effect on my ADHD is methylphenidate. It helps with concentration a bit, it helps with anxiety a bit. I don’t want to try life without it. But all the rest? No.
So I tell my doctors that I’m fine, I’m good. I’m managing. The medicine really helps, I say, and beyond that I know I just have to stay consistent with my routine and schedules. And they smile and nod and make a note in my chart and write out my prescription and send me on my way.
But of course I’m not fine. This will never be fine. I’m on a never ending cycle of failure to Just Do It and terrible future consequences, but I would never dream of telling my doctors that. I’m done with the exercises now. If I ever feel the need to revisit them, I have binders full and I’m an expert in filling them out.
I’m not fine. I’m not well. I’m not good. I’m not managing. But I told myself I was all those things. Until I saw Dr Barkley’s lecture and now I’m just heartbroken. Because the knowledge is there, it’s been there for a decade, probably much longer, but it has failed to permeate into the medical community. I will never be able to Just Do It, I will never be able to learn to juggle all these things on my own, and the medical community has failed me and everyone like me.
The solution isn’t exercises and meditation and learning to do it yourself. It’s not adapting me to society. The solution is adapting society to me, by creating the tools I need to function in this society. Cleaning service on prescription. Scheduling and financial services on prescription. Executive function services on prescription. Without all these different things weighing us down like rocks tied around our necks, we will be successful. Fully contributing members of society. I want the ADHD version of braille signs, gradient signaling, ramps, wheelchairs, white canes, prosthetic limbs.
But instead, I have exhaustion and shame and now heartbreak.
andulkaphoto
jbbartram-illu
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