My autism diagnosis didn’t surprise me – but my ADHD diagnosis did. I grew up in the 80s, and back then, while there was no ADHD we all knew there were some kids who were on Ritalin. And those kids really stood out. They were the ‘problem children’. They were often loud. Couldn’t sit still or stay in their seat. They were the kids that shouted out instead of raising their hands. They were the kids that the teacher spent a lot of time disciplining. They were the kids that didn’t complete their work, or if they did complete it they forgot to turn it in. They were known troublemakers.
Me… I can tell you, I was not that kid. Certainly not at school. I was the kid they put in the gifted programs who became a perfectionist. I never wanted anyone to see me make a mistake. I made it my mission to get top grades. And I did. And I worked very hard to be sure to follow all of the rules – often to the point of freezing because I was so afraid to be caught being anything less than perfect. I was quiet. I followed the rules. I stayed in my seat. I hated to call attention to myself, but if I did need to say something, I raised my hand. I followed instructions on assignments. I got my work done, on time, and turned in. It was even neat.
And this was me most of the time in primary school. Sure there were times when the mask cracked at school. Times when the stresses of life were so heavy that I couldn’t hold up the mask. But overall, I don’t think anyone from my school suspected any kind of ADD.
They did know that I was anxious, as I often tried really hard to stay home instead of going to school; and once I was at school I would have frequent stomach aches, and try to get my mom to pick me up. The school secretary’s knew our home number because they had to dial it so often.
And I did see a psychologist or psychiatrist when I was six. My parents were given some tips on how to help with my anxiety issues and strange phobia of men with beards. But in looking back the only indications that I may have been considered to have had ADD were a book that I remember my mom having called The Hyperactive Child, and there was a time I recall my parents trying to cut sugar out of my diet because my cousin’s doctor told them to do that for her behaviour problems. I very vividly recall this because I love pancakes. They are a total comfort food for me. And I remember being a kid, and my grandpa took me out to breakfast and I was so looking forward to pancakes with syrup – but he wouldn’t let me have syrup and instead gave me a pink packet of Sweet and Low, which was a sugar substitute made of Saccharin.
This meme about sums it up. Except I am sure there were tears.
I know that I moved around a lot as a child. My dad used to get angry at me because I would stand at the dinner table instead of staying in my seat. I also remember climbing things a lot, such as trees, fences, and furniture. I remember hanging from my closet shelf. And I know that I was never a good sleeper. But I was really into sorting and organizing things. I was really into creating and using systems. I was tidy. I didn’t have issues getting places on time.
And all through school I did well, and even earned a scholarship to University. I graduated With High Distinction from a reputable University. And all the while I had no idea I had ADHD.
More questions but no real answers
ADHD didn’t become a big problem until after I had hit all of the responsibilities of adulthood. Trying to get a career started; running a household; and probably the biggest breaking point was having kids. Maybe even one kid was manageable. But by the time we had two kids, we were running our own business and it was all too much. Some things started to really fall through the cracks.
After my daughter was diagnosed with ADHD at 8 years old, I wondered about it in myself. Somewhere I read or head that often women with ADHD don’t get diagnosed because they are able to hold it all together until they are adults with children, and then it becomes all too much. Somehow I came across the book “The Queen of Distraction: How Women with ADHD Can Conquer Chaos, Find Focus, and Get More Done” by Terry Matlen. And I related hard to a lot of what I read.
I was curious about diagnosis. I booked in with an award-winning psychiatrist who specialized in diagnosing and treating adult ADHD. After our initial consultation she told me that she really couldn’t tell whether I had ADHD or whether it was the anxiety disorder and stresses in my life that were creating the ADHD symptoms (overwhelm, forgetfulness, brain fog, insomnia, agitation, fidgeting). I was already on Cymbalta, which is an SNRI and she said that can help with ADHD. But she thought the best course of action was to add on BuSpar. And to be fair it did help a bit. But eventually I chose to come off of meds again. I felt like I didn’t fit and wasn’t being heard. Like I had to figure it out on my own.
Much like my suspicion that I was autistic, I kind of filed my questions about my neurology away while I took care of the people around me as best as I could.
Okay, so I have an ADHD diagnosis… but I’m too afraid to take a stimulant
But when I was being evaluated for autism, the doctor had me fill out an ADHD screener which showed that it was worth further evaluation. I saw a psychiatrist who diagnosed me with ADHD and prescribed medication for it in July 2021. He wanted me to try Vyvanse, but because of my fears around medication thought that short acting dex would be a better starting point so I wouldn’t ruminate all day if I reacted poorly.
But at that stage debilitating anxiety was at the forefront of my mental health issues and because my anxiety issues tend to be expressed as medical anxiety, I was terrified to try a new medication. Especially a stimulant. I was afraid I was going to take one pill and fall over and die. I never took a full dose.
As the panic attacks became increasingly frequent, I asked my doctor if I could go back on Cymbalta because while I didn’t like the side effects, I never took any other medication that stopped the intrusive thoughts and treated anxiety as effectively as Cymbalta did. So in August 2021 I began taking Cymbalta. After a couple of weeks I finally stopped having panic attacks, and the excessive all consuming anxiety subsided. While working through my issues with trauma, and learning how to take better care of my mental health, my doctor has worked with me to find a dose of Cymbalta that provides me with the greatest benefit with the least side effects.
And recently we decided that my mental health was pretty stable. I had more resilience when challenging things happened. And now my physical health was more of a concern due to the weight gain from the Cymbalta (and it may sound vain, but my self esteem was suffering because of the weight gain too). We began to experiment with lowering the dose slowly.
As we got to the end of the year, and my doctor was getting ready to go on leave, we agreed to reduce my dose again. I was now down to just 15mg of Cymbalta a day. And it did not go well. I go into detail in this blog. I wouldn’t have an appointment for 6 weeks, and so I decided when it wasn’t going well to bump back up to the previous dose of 20mg.
And having a six week break from therapy gave me a lot of time to think. From what I could tell, there was a threshold I was hitting where the medication dose dropped and the ruminating thoughts took hold. I tried to wait it out, as other impacts of dose changes had diminished with time. But at 15mg, the ruminating about my body and illness began again. And while I didn’t engage with it in the same way, and I wasn’t going down the ‘I must be dying’ path, in my experience, the problem with the ruminating is that it is a cycle that seems to feed on itself. The more I ruminate, the more I ruminate. And fuck that shit. Even if I could ‘fight it’ or better yet ‘accept it without fighting it’ it was like having some kind of parasite infecting my brain. It was sucking more and more energy out of me. It was distracting me. And I had enough.
I have spent much of my life with the core belief that life was meant to be a struggle (even though Bjork disagreed. That there was honour in bearing as much as you can without help – (hmm… could have to do with being raised as a Catholic; Jesus carrying his own cross he was going to be killed on was the ultimate in heroism and honour – but even Jesus had to have someone carry the cross for a little while when he became too weak).
I had to weigh up my fears and make a decision
I was tired of ‘just getting by’ and barely that at times. I wanted to feel alive. And I was so afraid of feeling like this for the rest of my life – that I was willing to take a new medication. But I had to get back to 20mg of Cymbalta first to be sure that the ruminating would go away. And at 20mg, it did stop. It was nice to get rid of the ruminating, but I still felt a low level depression type of feeling. I was so frustrated with how fucking hard things were all the time.
Last year, my older daughter and husband began taking Vyvanse. And this month, my younger daughter began taking it too. I was seeing the impact that it was having on my family. When my husband was diagnosed with ADHD I was not surprised in the least. And when he started taking Vyvanse, he was able to do so many of the things that he hadn’t been able to do before. I definitely noticed how his life was improving on Vyvanse.
When I was first prescribed ADHD medication, it was only my older daughter who had taken meds. She struggled with stimulants when she was younger and used a nonstimulant medication until recently. But now that my husband and teenage daughter were taking Vyvanse, they could describe a lot of the benefits they were seeing, what it felt like to take it, and – probably the most important thing for me is that they were able to talk about the side effects and how they weren’t permanent.
My backpack is full of fucking rocks
I was starting to wonder if it was something that I should try again. I was tired of feeling like things were never going to get better. To put it into an analogy, imagine that in life we are all climbing a mountain. Everyone will struggle with the steep or jagged parts of the journey. And we all accept that as a part of life. But forty plus years into my journey, I realise that not everyone’s backpack is filled with fucking rocks that are making the climb difficult. And I realise that mine is. Even the smooth parts of the journey are harder for me because I am carrying these rocks. I don’t know why I am carrying them. I don’t know who put them there. And I have spent my life believing that I can’t take any of them out. But now that I know that not everyone is carrying rocks, I wonder whether I have to. Maybe I don’t. Maybe I won’t. Maybe it’s become so hard to carry the rocks that I don’t care what happens to me if I take them out. Maybe I will suffer the consequences rather than keep carrying those damn rocks.
I contacted the psychiatrist that diagnosed me with ADHD and he had an opening last week. We discussed what was happening for me, and he prescribed a starting dose of Vyvanse to take in the morning. And instead of my usual hesitation in trying something, I take the full dose. And everything changes. And I realise that I’ve been carrying more rocks than I thought. And I realise it feels really good to set them down. Because without all those rocks in my backpack, I can focus on something other than putting one foot in front of the other. I can use my energy for more than just making sure that I survive the trek. I feel a lightness within myself that I might even consider as happiness. I feel hopeful. I feel like I may be able to reconnect with parts of myself that I considered dead and buried. I feel once again like life is worth living.
It took trying a stimulant to show me just how much I was struggling
And the euphoria of day one isn’t matched again the rest of the week. But there are things that I notice as the week goes on. Those ‘rocks’ that I didn’t know were even there. Or if I did, I couldn’t ever get a grip on them so they stayed lodged in my backpack, weighing me down.
One of those really big rocks is what I am calling ‘I don’t wanna’. I had no idea how much of my life was spent negotiating with myself, trying to get myself to start on something. I would often feel some iteration of ‘I don’t wanna do that’. I don’t wanna get out of bed. I don’t wanna brush my teeth. I don’t wanna make food. I don’t wanna take the dog out. I don’t wanna do work. I don’t wanna write. I don’t wanna make this phone call. I don’t wanna go to this appointment. I don’t wanna go shopping. I don’t want to talk to a friend. I don’t wanna do any-freaking-thing.
When your entire life feels like it’s all obligations that you have to negotiate your way into doing, hell yeah that gets depressing. Once I got started on things, I would be fine. But that didn’t ‘lighten the load’ of the ‘I don’t wanna’ rock. Instead I would often get frustrated with myself because it wasn’t so bad once I got started, and I would wonder why I didn’t just get going on it when I ‘should’ have.
And better than being able to get started without the negotiation is the feeling that I want to do things again. Everything felt like it was too much of a commitment of time or energy before – especially because I felt like I had too many things already on my plate. But now, I actually want to do things. I want to exercise. That’s a bit of a shock to me.
And I am opening myself up to creative projects and ideas both with work and with my writing. And one of those ‘rocks’ is an inability to prioritise which is kinda stuck to a bunch of rocks having to do with the processing of time. A poor ability to estimate how long something will take means that the timeframe defaults to infinite; the idea that everything that has to be done has to be done right now; and losing track of time which leads to either other priorities not getting completed, or being late to appointments.
Another ‘rock’ I have known about is that if I get interrupted, I have a hella hard time getting restarted on things. But what I didn’t know is that medication could help me with that. In fact, I got about halfway through this blog post before my daughters interrupted me. I have been interrupted multiple times while writing this – but instead of giving up and leaving it for later, I was able to pick up where I left off and keep going.
Another thing I have noticed is that I am not so obsessed with food. Maybe that has to do with not seeking stimulants, as I was often seeking sugary, carby foods. I do notice that there are still times of day when I am still looking for a stimulant such as coffee or chocolate. This may be an indication that my dose isn’t quite right, and that’s something I can talk to my doctor about. But let me just say that it’s a huge relief to put down that particular rock. For one thing, the heaviness isn’t figurative. I have gained a lot of weight since starting Cymbalta – but to be fair I have a long history of sugar seeking and being overweight. And any time I have dieted, it’s been a massive challenge. In fact when I went on my first diet, Weight Watchers, when I was 17, I figured out how to maximise the amount of food I was allowed to eat, and substituted my sugary food with sugar free foods to get that fix. The amount of food I ate probably actually increased but ‘diet foods’ reduced my caloric intake allowing me to lose weight. But I was completely obsessed with ‘when can I eat next’.
To feel like the only thing making me feel ‘good’ is food really sucks. I mean, I am all for enjoying food – but like any addiction – you end up feeling pretty bad when you’ve indulged in something for the wrong reasons and eventually stop enjoying it and feel enslaved by it.
Before Vyvanse, I was taking a daily nap which I needed in order to ‘get through’ the evening tasks of making dinner, cleaning up, having family time and getting the kids off to bed. But now, I haven’t napped much this week, and I still feel like I can make dinner without all the ‘don’t wanna’s’ weighing me down and I can even engage in productive things and have energy to do more than just ‘get through’.
My husband has told me that the difference in me is ‘like night and day’. And I have to agree. I no longer question if I have ADHD.
The question “Do I have ADHD” has been answered – but I still have so many questions
I am left wondering a couple of things. Why was I able to be ‘more capable’ at other times in my life when I was unmedicated? Was it a perception? Was my backpack being stuffed with more ‘rocks’? Does it have to do with perimenopause/midlife?
And also, why was my ADHD ‘hidden’? How did my autism help me mask some of my ADHD for so long? And did my ADHD help me mask my autism? What role has trauma played in my ability to mask ADHD? How did my ADHD help me survive trauma?
I think those questions are best left for another blog, as I have to get on with some other priorities right now. But I do want to explore them because while I can’t change my past, maybe my story can help some other ‘seekers’ learn more about themselves.