Quantifying struggles & the joy of staying home
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I keep thinking of my phone and the ‘bad-news-tech’. Every time I unlock it I’m faced with a portal into bad, badder and the absolute worst news on all fronts. Economic. Diplomatic. Climatic. Social. Everything around us feels like it’s collapsing, including our inner peace.
I’m spending more time disassociating, swinging between losing hours watching stupid reels on Instagram or else throwing my phone away from me and doing absolutely anything else.
It is the ‘anything else’ that gets me through.
Although, if I’m being honest, at the moment it feels like this ‘anything else’ isn’t fully joyful… It’s just work, house work and watching some series… Bake Off, House of the Dragon, Never Mind the Buzzcocks. I’m falling into collapse along with everything else in the world and this undoing is looking a lot like being too tired to chase or even make 5 minutes for the things I find really joyful.
My garden doesn’t need tending. I can’t concentrate on any of the books I’m trying to read. I haven’t found any recipes I want to cook or a sweet treats I want to bake. I’m not seeing friends, I’m cancelling plans.
I know it sounds like I’m depressed.
I’m not. I’m really not.
I’m just tired.
I’m tired of struggling, daily.
I’m tired of bursting into tears simply because there are too many noises in the house. Or because a plan changed. Or because my new hair brush doesn’t feel the same as the one I somehow managed to forget and leave behind in Denmark. And I’m tired of losing things. I’m tired of not having the energy to take part in the activism I once had space for. And I’m tired of beating myself for all of it.
Most of all though, I am tired of living in a limbo without professional support.
It’s been more that 1 year since my partner said 3 little words that changed absolutely everything.
This. Is. You.
He was deep into a chain of Youtube videos and stumbled across something about ADHD and directed me right to it… “This is you” he said.
It was me! And since then, I’ve found parts of myself that previously felt utterly unacceptable become understandable, parts of myself that were mysterious questions, are now answers.
Everything about who I am as a person is defined by that moment. Before it and after it. The before me was miserable, everything was a personal failing. The after me started to push against that old ideology and tried to live with grace and kindness for being how I am, who I’ve always been — whilst untangling the masking and trauma that has gone along with hiding and suppressing and living at 200% to achieve the bare minimum.
I’ve known for over a year that I have a neurological disorder that renders day to day a struggle and yet I still don’t have a date for ‘official’ medical diagnosis that would then set me on the path for support.
I got through most of this year by clinging to my joy like a life raft, but as autumn (my favourite season) thrives and winter descends, I’ve somehow let go of joy. I’m basically Jack from Titanic… I’ve died (inside) and now I’m sinking to the bottom of the sea. The sea being a joyless void where nothing happens other than work and netflix.
If you were say…’Chelsea, what exactly is it you struggle with?’ I wouldn’t be able to tell you.
How do you quantify and communicate the struggle of a random Sunday…
Of the dog licking her paws too loudly whilst I try and figure out how to work the new-to-us electric oven top Tom bought off eBay so we could stop being so reliant on gas (yay!), only to find this is also too noisy. Because of the noise, I can’t bare to make the soup I was gonna make to help me feel better after I woke up all snotty and feeling like crap. There’s climate breakdown and people are starving or drowning and I have a to do list as long as my arm. Some of the items have been waiting to be completed and ticked off for weeks, but none of it will get done because of said noise and snot.
There’s a war that might turn nuclear and I had plans with a friend, but I cancelled them and re-scheduled to meet them next Saturday, but Tom just told me a different friend just text saying they’re getting married on Friday and we’re invited to their party. I really can’t avoid either of social engagement these unless I basically wanna send a message to each of these friends that I don’t really like them. So… I have two events coming up… and I need to decide what to wear for each and because I don’t know either friend super well, I need to plan scripts and questions in advance to help socialise my way through them.
On top of this, I’m still tired from a really lovely, but draining, social engagement that happened yesterday and all the meetings that happened at work during the week. The dishes are piling up and the laundry needs doing, but it’s raining so I need to wait for a sunny day. There’s millions who can’t heat their homes properly. We haven’t hoovered or mopped the floors in weeks and there’s piles of mess in all corners of the house. The NHS is breaking down and there are thousands being failed by tory austerity, including some of my family. AND tomorrow is Monday again, which means it’s back to work and a week filled with meetings I’ll need to recover from.
Somehow, all this has amassed and I’ve ended up on the living room floor on my knees, curled over like I’m praying the the dust and hairs that enshrine the carpet, crying with my hands that are pressed hard over my eyes…
I can’t quantify it.
Because I know to other people these are just normal struggles and normal struggles are part of any old bad day and a bad day is just lots of little inconveniences or hard-to-complete tasks that have compiled at the same time or at a time you could really just do without.. A thanks but not thanks type of thing.
Most people see this and think, or even say… Everyone gets overwhelmed sometimes. Everyone gets sick sometimes. Everyone struggles with newness or change.. Everyone gets busy. Everyone struggles to find work-life balance. Everyone gets tired sometimes.
And everyone does… Sometimes.
There’s an analogy for this.*
Shitty, overwhelming days are like visiting a theme park. You go on the rides and you experience the ups and downs throughout the day. At the end of the day you’re understandably worn out so you leave and head back home to rest.
Everyone visits the theme park at some point… The difference is neurodivergent people never really leave the theme park.
Where a neurotypical person will visit the theme park and wake up the next day to crack on with normal life, people with ADHD and Autism wake up every single day having to visit the theme park… Over and over and over and over and over again.
It’s not just one bad day. It’s everyday.
I lived with this for 31 years.
That’s 31 years of bad days, 31 years of never leaving the theme park, despite really really really wanting to.
Pause. Take a second to empathise with this. I want you to really imagine the fatigue that goes along with all the noise, mental chaos, masking, scripting, distraction, to-to’s, obligations, highs and lows of visiting a theme park for years on end, day after day after day. Imagine the hopelessness and joylessness you’d feel.
There is hope though, there’s a light at the end of the tunnel! Because the theme park isn’t normality. It’s a disorder and there IS support available for that. Hold your horses though… To access the support you have to move beyond self-diagnosis and gain medical diagnosis. And here’s where we kill the light… The wait times for medical diagnosis with the NHS can range from 1–6 years. And sure, you can go private but it’ll cost ya a few grand.
The government doesn’t value health, let alone mental and neurological health, so self-diagnosed people remain in limbo for years. Because of underfunding, our joyful days are stolen. We’re being forced to visit the theme park even though we know there is support available that might help us stay home instead.
That’s all I want. I want the support in place that makes a day feel like the joy of staying home instead of the chaos of visiting a theme park.
*I heard this analogy on the ADHD Adult UK Podcast.
