This week’s newsletter is a guest post written by my husband and business partner, Craig Boyle. I asked him to write about his experience with ADHD and the current medication shortage, as well as how the condition is portrayed online.
As Craig’s wife and partner for over a decade, ADHD is a big part of my life. However I don’t think it’s my place to write about the condition, as I don’t have it myself.
So, here’s Craig in his own words talking about having ADHD as a partner, freelancer and dad.
Hello everyone! Ellen has asked me to write a guest email this week, and I must say, the weight of responsibility in talking to you all feels daunting. I don’t really use social media anymore and prefer to keep my circle focused on niche hobbies and interests because the wider world fills me with anxiety.
However, knowing that Ellen has created a safe little corner of the world with this newsletter, I figure you’ll be familiar with me from the odd mentions that have cropped up in Ellen’s usual (excellent) work.
This week, I wanted to talk to you all about ADHD, both as a medical condition and as an internet craze. Ellen’s newsletter often discusses the internet and its effect on mental health, so I feel I’m in a unique position to offer some insight into a ‘trend’ that I have very mixed thoughts about.
The good side of the internet
ADHD is a condition I’d probably have never known I had without the internet. Ellen used to follow a YouTuber who went through a similar mental health journey to me, being misdiagnosed with depression and cyclothymia before ultimately finding out she had ADHD. Recognising many of the symptoms I shared with this YouTuber, Ellen approached me and asked me to consider it.
I was initially pretty resistant. Like many of us, I thought that ADHD presented itself in the classic view of a hyperactive kid unable to sit down. I’d been a good achiever in school, though looking back, many of my ‘successes’ were actually failures to realise my true potential, where I should have been achieving far better grades had someone just spotted that my talkative nature and inattentiveness weren’t down to being ‘lazy’ or ‘unfocused’.
After hearing Ellen out and looking into it myself, I followed the pathway to diagnosis by approaching my GP and then waiting…forever to get referred to the ADHD unit. After two years, I was finally reviewed by the NHS’ ADHD & autism service team here in the North East, and after a few interviews and discussions, I was diagnosed.
Diagnosis opened a huge door for me. It meant I could research the condition and use it as a lens to understand myself. I recognised so many of the behaviours and traits listed online and saw them in a whole new way.
What a relief it was to know that all of the behaviours I had attributed to me being incapable and ‘lazy’ were actually part of a medical condition. It felt so good to be able to forgive myself.
But of course, as anyone who has ever Googled anything remotely medical can attest, looking up ADHD comes with plenty of pitfalls, too…
The ugly side
ADHD is a trend. I feel bad for saying that because it sort of fuels the fire of ADHD denial. On Reddit, there has been a GP-led discussion about ADHD in the UK where many doctors basically admit to thinking it’s not a real condition.
Meanwhile, you’ve also got an undeniable trend occurring on platforms like TikTok and Instagram, where behaviours that are slightly erratic or careless get categorised as ADHD. Even worse are the ‘ADHD hack/tip’ videos that offer absolutely puerile advice such as “make a list” or “meditate”. However, all of that pales in comparison to the most cringey and painful statement I hear in many of these videos, which is the idea that ADHD is a superpower.
If ADHD were a superpower, it’d be like being able to turn invisible – but only when nobody is looking at you. ADHD means you have an inability to regulate your attention span. This becomes a critical impairment in a neurotypical world. Before diagnosis, I thought many of my behaviours were just laziness or ignorance and hated myself for it. Post-diagnosis, I still feel bad about things, but at least I can explain them.
The reality is that living with ADHD is not a superpower in any way. It’s a battle to try and adapt to the real world and behave in a way that meets the needs of the people around me. Most of the manifestations of ADHD behaviour are negative – I end up doing things that appear selfish, ignorant or just apathetic.
I try to be a good husband to Ellen, but I constantly fail her by ignoring her words, forgetting to do chores, being unable to action certain organisational tasks etc. This, in turn, puts a mental load back on her to have to do it for me – which cycles back to me by adding a crippling sense of guilt to the whole thing. Parenting with ADHD is its own struggle, but I don’t think I’ve got the space in this newsletter to delve into it.
Hyperfocus, which is where the ‘superhero’ concept comes from, is the state in which an ADHD person becomes intensely fixated on something. Whilst it does have benefits (I’ve painted a whole Warhammer army in a week, for example), it’s not something you can choose to engage. In most cases, hyperfocus means I ignore EVERYTHING else. I forget to brush my teeth, I fall behind at work, I fail to reply to friends and family messages, etc. It isn’t a positive thing.
Finding balance on the internet
I think the medication issue is the best way to frame how I think of ADHD and the internet now. Initially, meds helped to transform my life, giving me some much-needed focus and concentration. However, after over a year on them, a global shortage suddenly meant I had a lower dosage I needed to space out over months to avoid running out. Before long, I was becoming intolerant to it and experiencing some nasty side effects. I received zero support from the ADHD unit or from my GP, aside from a phone call to say there was nothing anyone could do about the shortage.
The internet has been useful in showing me other people with similar problems and helping me find support. It’s also been a negative in that there’s so much conflicting information about medication that one minute I’ll be reading about titrating up my dosage, and the next I’ll learn about how there are ‘unknown long-term side effects’ and start to panic about my heart. Unfortunately, I also get second-hand empathetic panic whenever I read about people struggling to secure any medication and falling through the gaps just like I have.
As of writing, I’m currently unmedicated – which is fine in itself. After all, I lived like this for 30+ years. However, knowing that a more productive version of me is a possibility, I’m about to start my meds again and move up through dosages to hopefully avoid the side effects.
I’m going to have to cut this here, as it’s been really hard for me to decide what to write, and I could talk about it forever. There are so many ways that ADHD impairs me that I could fill a book with it – but I think I’ve covered the main issues.
With regards to how the web affects our mental health, hopefully, I’ve shown the duality of the internet – it’s a tool of largely unregulated access to information, which means you’re just as likely to find useful information as you are to find unhelpful stuff. The key is to be able to filter and shift through it all to find what you need to avoid and what works best for you.
Ellen here! I hope this piece was insightful; it certainly was for me. We’d love to hear your thoughts, so pop a comment below or reply to this email, and I will pass it onto Craig; he would love to hear your feedback on this very personal piece.
In this week’s Touching Grass, it’s been difficult to get outside because the weather has been so rotten but we did get along to Newcastle’s Christmas Market for a mulled wine and a visit to the Tyneside Cinema to see Dream Scenario - a totally insane film.
That’s all from me this week,
See you next week for more of the same!
Ellen x
Thanks for being so real. I feel the same way when people talk about my daughter's hearing loss is a positive. Obviously I hype up how it makes her special and unique, but I won't gaslight her into thinking it's a cause for massive celebration when the reality is she lives with the pain of regular infections, has had the trauma of two surgeries and has the stigma and maintenance of a hearing aid to contend with. It's so vital to acknowledge that it makes life more difficult, and not slather it in faux glory.
This is such a great insightful and honest piece. A few of my close friends have been diagnosed in recent years and I’ve learned so much from hearing about what they went through. I think it’s so important to understand what ADHD really looks like and the ways it creates so many daily struggles. I’d agree that the icky sentiment of it’s a ‘superpower’ is inaccurate at best, and ableist at worst. I think access to information and diagnosis is a really wonderful thing but as you say, it comes with a huge caveat in a world where misinformation is rife and diagnosis still comes with so much stigma.
Thank you for sharing your experience - diagnosis is definitely not the end of the ‘journey’!