I wrote this out for FB and then thought I might as well share it here as well. So if you have ADHD, are a late-diagnosed adult with ADHD, and most particular if you are a person with a uterus and/or have children, this one might be for you.
Last couple of days have been a little...weird. Let's start at the beginning. Buckle up and learn something.
As many of you already know, I have ADHD. It's a condition with a PR problem--a lot of people, often even medical professionals, have a very distorted idea of what it does, and a very limited one. For starters, it's not about parenting, or lead paint, or lack of discipline. It's genetic, *highly* heritable, starts in childhood and persists throughout life, and is a sufficiently severe disability that it comes with a decrease in life expectancy of up to 13 years. It is a visible difference that can be perceived in brain scans. These are all, at this point, well established and thoroughly attested in the scientific literature. ADHD affects up to 5% of the population and appears across cultures. It is very common.
It's not just about lack of attention--in fact, plenty of medical professionals think the name should be changed, as in fact the problem isn't the volume of attention but the way we struggle to direct it. We are motivated by interest, and struggle to properly weight future goals and consequences, specifically because they are in the future. If the robin outside the window is more immediately rewarding to our brain, we will watch that, and not the teacher. Our ability to properly weigh the consequences of that choice is negatively impacted by our own biochemistry.
We struggle with many of what are termed the "executive functions", the self management systems of the brain. Degree and presentation varies from person to person, but initiating tasks, completing tasks, staying ON task, restraining impulses, emotional regulation, and working memory are among the things impacted. My working memory is notoriously horrible. When they send you those activation codes on your phone? I often have to go back and read them out several times to enter a six digit number. I have to stop and remind myself what I'm doing between every step of my morning bathroom routine, or making tacos. Sometimes I take off my glasses to put on my contacts, reset, and reach for my pill bottles while I still can't see. My long-term memory is also affected, with my husband de facto serving as the memory-holder of the family.
Another common symptom I personally experience is "time blindness", which can mean both that you have no "internal clock" that has a clear idea of the passage of time, and that our ability to properly weight the importance of things in the future is impacted. So, for example, I can know intellectually what's coming, but it takes some really complex and exhausting antics to actually focus and work on those things if they're more than a week or sometimes even a couple days away.
Without externally imposed controls, many ADHD people flounder and fail to meet social markers of success. Estimates of how many ADHD people manage to complete college range from 5% to 15%. Again: 5% to 15%! I have failed twice myself. WITH externally imposed controls, ADHD people often have to work far harder to make their brains do what is required, and either fail and develop an image of themselves as failures (usually with plenty of external help), or keep fighting and suffer crippling burnout.
To that point, ADHD is HIGHLY comorbid with a whole range of knock-on conditions, some of which stem from the same brain patterns that give rise to the ADHD itself, and others from the trauma of living with a disability, but they include very high rates of depression, anxiety, fibromyalgia, social isolation, and addiction. I have dealt with depression, anxiety, and fibromyalgia my entire adult life. I have never ended up in the trap of self-medication but let's be real, that's partly about having supports and a healthy social environment. It's not some accomplishment I praise myself for, nor is addiction a sin I shame anyone for.
And anxiety has a very different texture to it when what you're really anxious about is the next time you fail in some catastrophic way. Lock your keys in the car. Completely space on a doctor's appointment. Go to pay for groceries and find that your wallet is next to your computer at home. Because the anxiety is not irrational fear of some generalized bad thing. These things do and will happen, regularly. Sometimes it feels like the only fix is getting good at recovering. Because no matter how many times you manage not to blow it, there's always another chance.
So, the struggle to be a reliable person, to be a consistent parent, to be a dependable life partner, is continuous. And it is so so so hard and it sometimes feels like you're not actually making any progress at all. I have tried therapy. I have tried three (or four??) different non-stimulant medications that sometimes help people. One of them DID help. ALL of them had catastrophic side effects. There were times as I was trialing these medications when I needed to be minded because I wasn't capable of taking care of anything, not even myself. Without Jacob, I don't know where I'd be. Not here. Probably in poverty, which is where he found me.
I have tried probably most organizational tools you know of. I have tried imposing schedules, all of which turned to dust and ash when the next fibromyalgia flareup or the next major life disruption happened. I don't think a new schedule has ever lasted a month before.
I HAVE felt like I'm made progress lately. I learned things that really helped my fibromyalgia, which gave me the space to work on other things--just like getting the borders of a puzzle finished. Enough things were spiraling upwards, and I think I might be cementing some gains. I have felt optimistic.
But in the meantime, I asked my doctor if, now that no less than three cardiologists have insisted my heart is Perfectly Healthy, I could finally try stimulant medications. After decades of use, Adderall, Ritalin, and a couple related stimulant drugs are still the gold standard for ADHD treatment and improve outcomes substantially for many people. And stimulants are in serious international shortage. Have been for many months. The only one she thought she could get me was Adderall. And she didn't dare try anything but the standard 30mg because nonstandard dosages would be even less attainable.
So now I'm taking Adderall. One week on 30mg, which I stopped when it was clear my function was being seriously impaired rather than improved. Reassessed with the doctor, now trying 60mg, because that's two of the pills I've already managed to obtain. It is....too much. And in some ways it fixes problems I wasn't working on, while so far making my executive function, my initiation or even *contemplation* of tasks, virtually nonexistant. Which was, of course, the thing I was trying to fix.
So yeah. When you have the context, I figure you can understand the substance of my frustration yourself. If you have children, I don't think you need my help to imagine what it would be like to know that you are unpredictable, or to see that your children are used to to you undergoing events that make you act strangely and erratically. I think just knowing that often, new medications introduce themselves by giving me a migraine, and I know this is possible when I take that first pill, is fairly self-explanatory. And so I expect you can imagine what it would be like, with all of this as a backdrop, to experience worsening of your symptoms, probably because of age-related hormonal changes. To in desperation try something you'd previously been denied. And to learn that it probably won't help.
In a week, I will either give up on Adderall for now or find a way to make it work. I'll put together the pieces yet again--at this point, possibly my strongest personal skill--and continue that upward climb as far as I can get. I'm incredibly fortunate in that regardless, I will be fed and dry and warm and loved. But right now, I feel justified in some serious dismay.
