Here's my reality of unmedicated ADHD - I hope it helps.
I have taken ADHD medication called Elvanse every day for the last 5 years. All I know is that before I took it, life felt like a movie I was an unwilling participant in, and after taking it, I felt like I was actually somewhat in charge. At least on the Board of Directors.
Since the ADHD medication shortage was announced 3 weeks ago, I have rationed the Elvanse I was able to get, because I have no idea of whether these 28 pills will be my last.
My GP said they were unable to do anything and I'd have to talk to 'my specialist' to get the dosage changed. The waiting list for this is 7 years long. (Please sign this petition if you want to help).
Since the announcement of the shortage, my therapist has been measuring certain metrics with me on a weekly basis. This has been extremely helpful, because the impacted self-awareness of ADHD means I haven't consciously been aware of how much I've been struggling on a day to day basis.
If we can't understand how ADHD is specifically impacting us, we can't 'name it to tame it'. The symptoms that affect you
Here's a summary of how I'm doing, with 10 being the best and 1 being the worst:
Energy - 7 to a 1.5
Imagine you are living underwater. Now imagine you have to physically pick your brain up every time you have a thought. This is what my brain feels like right now.
It is exhausting. My life is normally exhausting, but this is another level. At 4pm, I will almost crash out from tiredness. I am hit by waves of fatigue throughout the day, and find myself stuck for hours, scrolling on my phone reading the news.
Stacks of washing have piled up. Clothes washing is non-existent. My house is even more of a mess than usual. I have gone days without leaving it at all. Exercise has stopped all together. I cannot find the energy to cook for myself, and have had an empty fridge for weeks.
At the same time, I have published a best-selling book (ADHD Works at Work), trained 2 companies including Google, finished training 80 ADHD Works Coaches, and written for outlets like HuffPost and Reader's Digest. From the outside, I probably look more energetic than ever, but from the inside, everything feels like I'm drunk.
I have had to realign my life to join a new gym, and prioritise going to yoga first thing in the morning. I know that a routine of food and exercise is key to managing my energy levels, so this is going to be my focus for the week ahead.
Motivation - from 7 to 2
When I took the medication properly, I could do the things I needed to do. The tabs were clear in my head. Now, it's like unless someone is blasting a huge siren in front of my face, things are not going to happen.
Sure, I have been able to do things like create presentations at the last minute, but when you know that it's possible for your brain to do these things without having to descend into anxiety-fuelled adrenaline, it's quite depressing. It was almost better before, when I knew no different.
The worst part of it all is being trapped in the paralysis of procrastination, where you beat yourself up, but sit stuck in nothingness instead of 'doing what you know'. I have accidentally ghosted so many people, and I don't have the energy to even keep track of all of the unread messages. This dent to my motivation has meant I don't reply to my emails immediately, as usual, which has been hundreds of them piling up in insurmountable reminders of guilt and incompetence.
I've missed deadlines and submitted articles whilst having to ask people to check them again to ensure they make sense, because I've only been able to write in a haze of late-night adrenaline, instead of my usual routine of the morning.
It feels like I was spinning so many plates, but now they've crashed into pieces. Luckily I have a brilliant support team that help to ensure these are being picked up, but it's still really tough.
For me, getting clear on the precise challenges and asking for more help is what's important here, because I can see that I need to change my environment. I have no coaching training until January now, so my schedule should be pretty clear for the next 2 months... in theory.
Impulsivity - from 5 to 1.5
Let's face it: I am never going to have a clear schedule. I have no idea what I'll do over the next 2 months, because my brain is utterly unpredictable, impulsive and restless.
These last few weeks have been incredibly frustrating to feel like I am being dragged around by my hyperactive brain from idea to idea. I have made numerous impulsive decisions, including starting to restructure my entire business to buy a property for retreats that would have bankrupted me.
It's hard for me to express how much I wanted this. In the moment I saw it, I would have quite happily handed over everything I had, including any future prospects, to get it.
Fortunately, I have great friends and coaches that helped to slow down this process, so I was able to allow the dopamine to wear off. I've also made several decisions that I can't really explain, but just 'felt right' in the moment. Some of these are wiser than others, but the most frustrating thing is a brain that doesn't really care either way - in the moment, that is.
Emotional regulation / mood - from 6 to 1
Although my brain may not care before or during certain catastrophes, it certainly does afterwards. I have been reunited with the endless rumination of a brain that will not shut up. A brain that overthinks everything, especially about whether people are 'okay' or not, and will make me do stupid stuff in the pursuit of other people's happiness.
Like saying yes to any requests made of me without thinking about the consequences. I literally cannot think ahead anymore, which has seen me plan lots of different social appointments at exactly the same time.
This has also let me to start to argue with my friends and family. I almost cut an entire group of people off because one of them didn't reply to my message for a few hours, and I experienced the vortex of intense Rejection Sensitive Dysphoria, whilst beating myself up for how irrational I was being.
It's horrible to have the knowledge of being able to see what you're doing, but to still feel powerless over your own brain. I know that I need to act rationally, but my brain refuses. It expects everybody else to be a mind reader. Asking for help is simply not an option. So I isolate myself instead, feeling like I 'shouldn't be around people'.
This isn't great either, because I'd forgotten how mean my unmedicated ADHD brain is to myself. This executive functioning skill of an 'inner monologue', the one I've been able to tame with writing books, is back in full force. It refuses to be neatly processed anymore, preferring to torment me in live action instead.
It is horrible. It's horrible to hear myself tell people that I can't trust myself, or to beat myself up for being 'bad' at something. It's horrible to feel this impending sense of shame, of having made a mistake, when there's none to be made. It's horrible to feel the overwhelming sense of imposter syndrome, to realise that maybe this is who I have been all along, and the medication has just been silencing this out. It's horrible to feel so vulnerable, scared, and alone.
For me, taking ADHD medication comes with internalised stigma.
Many times over the last 5 years I have questioned whether I 'really' need it, or whether it's 'not actually doing anything'. I've hated the feeling of needing some kind of tablet to make me feel like I can function in society without my life erupting into chaos. This has been exacerbated by various people telling me I shouldn't take it, including a family member who said it was just a 'way for psychiatrists to make money'.
I wanted to believe that having a better life and environment would eradicate my ADHD, but it doesn't. Annoyingly, that medication has been a crucial part of my life in allowing me the motivation and focus to actually do the things I need to do to regulate my ADHD symptoms, like exercise and eating healthy food.
Having coached many people who are unmedicated, I don't think this is necessary for everyone, but before I went on medication, I was very close to taking my own life. That medication has kept me alive for the last 5 years, as much as I'd like to believe otherwise.
I have got all the ADHD coaching and knowledge one person can have without exploding. I have never pretended not to be struggling, but this kind of struggle feels unchartered. It feels scarier, and I'm sure that over time, it will become the new normal.
Part of me wishes that I didn't know what it was like to live with a brain that didn't feel like it was constantly on fire, because I am now acutely aware of how disadvantaged I am as a result. I am also advantaged in other ways - I can now understand what my brain is doing. I have the skills to regulate it, even if they take up a huge amount of my energy.
I feel safe enough to share my struggles, something I never would have done in a million years before. I wanted to share this because I recognise that I am in an unusual position in this ADHD world, where people may look to me for answers.
What I've found is that the answers are not in a certain strategy or 'hack', but in other people. Running the ADHD course group coaching this month has been the lifeline I didn't realise that I would so desperately need, just as much as the people who I hosted.
Seeing other people who can resonate with our experiences reminds us that we are not alone. When it feels like your brain is attacking itself, when you can't just 'get over it' despite having no reason to be 'upset', when you can't explain to anybody else what it feels like to fight so hard to get treatment, and then to have that plucked away from you overnight, along with a string of articles and stigma about how ADHD isn't even real anyway... these other people are a lifeline.
They are the reminder that what we are going through is real, and that we don't have to go through it alone.
There's no right answers, but there is support. In our last session, I asked everybody to write down something to share with the person who they had talked to about the challenges they were experiencing. It was beautiful to hear everybody's messages of love, hope and support to each other, when these things are so difficult for us to tell ourselves.
To have another person reflect back to you that you are okay as you are, that there's nothing 'wrong' with you for benefitting from medication designed to support your brain, is extremely important. This validation is what saves lives, because we realise that we are not alone. That we will have bad days and bad times, but there will also be better ones ahead.
They are the reminder of how we are cared for, and what tether us to this earth, even when our brains want to convince us otherwise. This is how I process my own struggles, and why I do what I do - because being able to facilitate a space where people can fully be accepted as themselves, is the important reminder that they are enough, exactly as they are.
If you are in this situation, know that your brain may be adjusting to any changes right now, and it might feel stressful and scary. Don't believe everything you think. You are not doing a bad job, and you are exactly the same person you were before. It's just like losing glasses that you might need to see clearly - this doesn't change who you fundamentally are as a person.
Yes, certain things might feel harder, but they are not your fault. They will not last forever. You have survived until this point, and you will continue to do so.
Even if it feels like everything is hopeless, remember that you have presumably managed to survive a huge part of your life without even knowing that there was a reason for feeling this way. Being able to understand your brain and how it works, even when you're battling against it, is a huge strength in this situation.
You are going to be okay, and so am I.
Please ask for help. Talk to people about the experiences you're having, and don't be afraid to keep this firmly on their agenda, because people might just not realise how much that medication was helping you.
I know how shameful it can feel to feel like we need that medication, or that ADHD is somehow an 'excuse', but please remember: it simply provides an explanation, not an excuse. You are deserving of support and care from the people in your life, and you are so, so needed here.
Resources
LinkedIn live with ADHD 360 on navigating the ADHD medication shortage
Template letter for your employer to notify them about the shortage
Other
Please sign the petition calling for a Public Inquiry into ADHD support here.
Become an ADHD Coach in April here.