Of Brains and Drugs [en]

India offers time to slow down, specially when your gut is unhappy. I might also have overdone it when it comes to activities – so I’ve been taking it slow these last two days and catching up on my podcasts, lying on my bed under the fan.

I’ve just listened to the episode “Why’d I take speed for twenty years?” by PJ Vogt (who used to do Reply All, and before that TL;DR). It’s about ADHD medication, its history, and PJ’s history with it. It was a slightly unsettling listen for me, given my history. There is a second part coming up, which maybe will tell a story closer to mine. I’m looking forward to hearing it.

In the meantime, here are some thoughts. Clearly the contexts in which PJ and I live are very different, regarding ADHD diagnosis and medication. The US clearly seems to have an overdiagnosis problem, and is generally very pill-happy with anything that has to do with mental health. Just take the pill and off you go. At least, that’s how I perceive it, seen from Switzerland – where ADHD is sorely underdiagnosed and even when it is, getting medication is far from easy.

PJ tells how after 20 years of taking various ADHD meds (+ antidepressants), since he was a teenager, he went off meds following the advice of his new psychiatrist to see how things would go, and figure out what was necessary. He’s still off them (a couple of years later, if my memory hasn’t been digested by my microbiome). And he has had a chance to discover – and like – the way his brain functions without. The podcast also walks us through the early years and decades of amphetamine and the search for a condition it could be the answer to. Initially an attempt at managing asthma, it turned out to not be great at it. So, there is this underlying idea of drugs looking for illnesses. In the early seventies, amphetamine (+ methylphenidate) became tightly regulated and stopped being authorised to treat depression. And that’s when ADHD diagnoses started to become more common, increasing dramatically over the next decades.

Now, nobody here is saying ADHD isn’t a real thing. However – and this is an issue I’m acutely aware of – it is a clinical diagnosis. It means that how you perform on this or that test does not determine if you have ADHD or not. What counts is the impact it has on your life. Does it prevent you from functioning, and to what extent.

PJ tells us he initially went through a series of psychometric tests, and it turns out he was below the threshold for the number of criteria required for a diagnosis (he discovered this whilst fact-checking the episode and reading through his initial medical report for the first time as an adult). One should note that diagnostic criteria evolve with time – those in the DSM-5 do not exactly match those in the DSM-IV. This means that “having ADHD” or not does contain an element of arbitrariness and subjectivity to it. Also, as it has to do with the capacity to function, one person could exhibit sufficient ADHD traits in one context, and not in another. It is not like the influenza or covid, where you “have it” or “don’t have it”.

It’s more like hearing loss, where there is a continuum starting with normalcy, and somewhere there is a cut-off point where the inability to function in the subjects life requires outside measures to compensate. I really like the parallel with hearing loss, as this is an issue I also have to deal with. Let’s dive in there.

I was born with hearing loss. I was born with ADHD. In both cases, they are not severe. I functioned for 13 years before knowing I had hearing loss, for 38 years with hearing aids, and for 47 years without knowing I had ADHD, and without medication.

As far as my hearing loss is concerned, if I live a life made up mainly of one-on-one interactions, with people who do not speak too quietly, if I don’t have to follow too many discussions with multiple people (particularly in noisy places or places with bad acoustics), if people around me take the trouble of coming up to me to speak instead of trying to communicating from the other room, and if my pace of life is mellow enough that I can recuperate from the extra effort I make in many social situations, I can live without hearing aids. And maybe, even, without “hearing loss”. When I am alone at home, my hearing loss doesn’t have much impact on my life. But I need to work, I want to have a social life, I want to have easy interactions with strangers and be able to communicate with soft-spoken people. At one point I was tired of struggling with all that, and took the plunge to get myself fitted with hearing aids. I have never looked back.

As for ADHD, maybe there is a life configuration for me somewhere in an alternate universe where it doesn’t have an impact on my life. Maybe a life where I don’t live alone, don’t have to work – or only when I feel like it, am free to fill my days with exciting things, have support for dealing with housekeeping, admin, troublesome emotions. And in a way, there have been times in my life where my life was rather well-adjusted to how I function – when I was self-employed, for example. Without really realising to what extent, I had built a career for myself which made excellent use of the particularities of the way my brain works. But as with living with hearing loss without hearing aids, it also came at a cost: missed opportunities, extra unrecognised efforts for the same accomplishments, and yes, pain, isolation and exhaustion.

I’m going through this because there is some vision of disability that leans towards “there is no disability, it’s just that we live in a world which is not adapted to our needs, abilities, or specific ways of functioning”. It comes in different shades and intensities, of course, but from my point of view, although obviously we must strive towards inclusion, it is normal that society is built to function with the “normal” in mind. It is normal that people expect me to hear when they are talking from the other room, because that is what works with the overwhelming majority of people to interact with. It is normal that people expect others to be able to be roughly on time at a meeting, because most people are able to. It is normal to write text in size 10 to 12, because most people are capable of reading at that size. Again: I’m not arguing we should not be inclusive, but I do think that there are objective differences in individuals’ ability to participate “normally” in the world we live in, and that it does nobody service to negate disability with ideas like “you shouldn’t have to take meds to be able to work and manage your household, society should adapt to you”.

Anyway. ADHD is a real thing. It’s not a black-or-white thing, but it is a neurodevelopmental disorder, it has a basis in physiology, and it can be more or less severe, and for similar “objective” severity, it can create big problems in one individual’s life and hardly any in another. I am saying this because when the discussion turns to ADHD and medication, or other neuropsychological or psychiatric conditions, there is always somebody to say that you should eat less sugar, do more yoga, tell society to go f*** itself, give yourself a kick in the pants, try harder, and also, taking meds long-term can’t be good for you.

That being said, what I really want to write about is how disturbing it is when you realise that taking a pill can change your life. Because that is what happened to me. I only have a couple of years of hindsight (who knows, maybe I started taking my pills when PJ stopped taking his), but the change is shocking for me. I went through years (approaching decades) of therapy way before I suspected I might have ADHD. I figured out a lot of stuff, sorted through it, grew a lot, came up with an impressive amount of what I now understand are coping strategies for ADHD. But my life was still collapsing. And taking a pill changed it pretty much overnight.

Five years ago, I experienced the real shock of understanding how much chemistry could transform what we think of as psychological. I had rather nasty vitamin D deficiency. After a couple of weeks of supplementation, my mood had lifted, I had stopped feeling tired and down all the time, life seemed to make sense once again. Because of a vitamin. A few years later a colleague told me how vitamin B deficiency had made her suicidal before they understood what was going on with her. We like to think that the mind conquers the body, but as an upset stomach in India can remind you, it’s more often the other way around.

Twenty years ago I was dead against taking any kind of psychoactive medication. Life put me face to the wall a couple of times and I revised my position. I still think drugs should come with therapy or counselling. Just like when you take antibiotics for an infection you’re also going to rest, if you’re on blood pressure medication you are also going to do what you can with your lifestyle to not make it worse, and if you need glasses or hearing aids you also learn to do things like sit in the front of the class, pick a quiet restaurant if you’re going to have an important conversation, and take care to preserve your eyesight or hearing.

I see two important reasons which, for me, explain why there is so much negativity around taking medication for psychological issues. First, our culture does think mind and body, spirit and physical, as separate. Taking medications that help your brain do its work better, and have an impact on what we think of as “me”, well, that kind of negates this separation of mind and matter. So it’s uncomfortable.

Second, we know enough about the placebo effect to be wary of it, but not enough about it to really understand what it does and how it works (to say nothing about how it is a key element of a double-blind randomised clinical trial). So, the assumption is “it’s all in your head”, right, you’re feeling better because you took a pill that you think is going to make you better. Improvement of psychological symptoms is not as simple to measure objectively as an infection or fever disappearing.

What makes it worse is that after some time, one gets used to the “new normal” with the medication. I have no temptation to stop my blood pressure medication because my blood pressure is well-controlled and I start to wonder if the medication is actually doing something. But life with ADHD meds, yeah, it feels all normal now, and sometimes the doubt creeps in. Do I really need these meds as much as I think I do? Was it really that bad “before”? I recognise that doubt for what it is – it happens with my hearing aids too. It’s super easy to check, however. I just have to try and go to work one day without my hearing aids and I’ll see how bad it is. Nobody will say “you’re struggling because you know you’re not wearing your hearing aids”. If I do the same thing with my medication, of course that will be the obvious assumption: it’s in your head.

For what it’s worth, I once went to a concert with people from my singing group without my hearing aids. Completely forgot them. And didn’t know I’d forgotten them. As we were waiting to go in, and I had a few exchanges with the people there, I couldn’t help but gradually notice how bad and muffled the acoustics in the hall were. I really had trouble understanding what people were saying to me. I thought it was the room. I only realised it was the absence of hearing aids when I reached up to press the button that allows me to increase the volume.

This has happened to me a bunch of times with my ADHD meds. Every now and again (rarely) I’ll forget to take them. (Scoop for people lamenting about these “horrible addictive meds”: people with ADHD regularly forget to take them… draw the conclusions.) I find myself faffing around, or having a really hard time getting something done at work or at home, and after an hour or so it slowly dawns on me… wait… did I take my meds?

Of course I wonder if I “lost” anything in the process of going “on medication”. I can clearly see what I gained. I’m happier, I’m able to do things, my mood is more stable, emotions are more manageable, my friends tell me I’m less scattered, I’m tired in the evening and actually want to go to sleep, I’m functional in the morning. I’m making plans for the future. But have I left anything behind? When you lose your hearing, what you don’t hear doesn’t exist. You don’t know that you’re not hearing the things you don’t hear. So, do I know what I left behind, if anything, with medication? Will I be like PJ in ten years, going off meds and rediscovering aspects of myself I had forgotten existed? Right now I’m happy with how things are, and have no objective reason to be concerned. But my mind wanders around and goes places, by curiosity, and this is one of them.

I’m looking forward to listening to the next episode.