How do you start the day?
I start with a well-researched concoction of supplements to help reduce the effects of burnout and deficiencies. Magnesium and B vitamins feature highly. I also take natural anti-inflammatories and vitamin D amongst the plethora of other goodies. Without them, the desire to curl up and sleep is constant throughout the day and I feel generally “wrong”.
This isn’t just tiredness. This is a special (and possibly unnecessary) kind of Weary.
Looking back I think I’ve always struggled with episodes of burnout. School knocked me out, and by the time I was 16 I was too confused by and terrified of what the outside world expected of me to continue formal education. I tried for another two years but it was disastrous and I spiralled down into an unhappy mess where just about everything felt like a struggle. In the interim 30 years (for most of it unaware of being autistic) the burnout built into something that these days never really goes away. I’ve bullied myself into too much and now I’ll never recover.
Autistic burnout can be hell. Its effects are so vast on all aspects of life that it’s not straightforward to explain.
At best it can be disruptive, inconvenient, irritating, frustrating and exhausting; at worst it can be devastating, life-limiting and depressing, with chronic health and mental health problems. I look back at lost time and cry.
Then there’s the relationship fallout.
I can’t allow myself to spend too long dwelling on how much this burnout affects the lives of my loved ones because that would be futile. I can’t fight it; it would only make everything worse. And a big part of my burnout is connected to my intense, internal – socially conditioned – pressure not to fail, and modern ideas about what success is.
I am also burnt out partly because I am thinking of others, I do think of others, I have always thought of others and it’s ruined me. I wish I thought it was worth it but, but for a few exceptions, I don’t think most people have noticed the effort or regarded me as thoughtful about them at all. I now focus entirely on my life at home with my husband and the youngest child we are still responsible for and our two grownup children. They are my world. They get everything (although it may look paltry in comparison to the actions of other parents) and I have no energy left for anyone else. This is not a conscious choice, this is just how it is. Energy is at a premium.
Ah, Energy. To me that word means so much. Because I have several different kinds of energy and some days all of it is absent. On other days I have the energy to cope with certain things but not others. Some days I am mentally energetic but can’t walk uphill. Other days I am physically able and want to go for a long walk but can’t face having a conversation. Some days I have vast and impressive problem-solving energy and can answer tens of emails and texts but can’t make the bed or remember to cook tea before 8pm. Some days I can do everything and still smile and chat. But that’s not often these days. I celebrate those days with the deepest of joy.
The constant anxiety around expectation and a life spent meeting it, has eaten away my strength and health. It’s only now in middle age that I can see just how massively devastating expectation is for autistic people. We are often confused by so many conventions that don’t seem necessary to us but we keep on trying to please until we lose sight of who we are – especially if we see ourselves as non-autistic and just basically failing. The constant strive to fit and to meet expectation and never being true to oneself is completely the wrong way to live. I am ruined. Who am I???
These days, sadly, it only takes a tiny trip out of my comfort zone to put me into recovery for days, if not weeks. Anything that upsets me or strains me and takes a huge effort will take longer to recover from. And yet those around me see something resembling conventional functioning and have no idea of the effort involved and so of course don’t understand the subsequent down time required.
Everything is affected.
Every part of my life.
I don’t have friends anymore. I can’t be part of anything because I am now so terrible at maintaining the to-and-fro that is essential for relationships, and people have understandably given up waiting for my reciprocation. I am inconsistent and my physical and social energy no longer match my enthusiasm. My willingness and my optimism have been pitted against my burnout for years and my track record teaches me that it’s not worth bothering other people with me.
It’s not my choice to have no friends and it’s heartbreaking, but a lot can be read into my silence and invisibility when people subconsciously expect so much from each other physically. And that’s the biggest problem of all: people don’t realise the weight of their expectations because they are not aware they have such huge expectation and that their version of friendship is actual quite energy-draining and physical for me. For autistics.
The socialising that means actually turning up for things – and preferably on time (Rachel might cancel, might say “no” might be late, might be uncomfortably quiet)…
The phone calls on a whim because someone fancies a chat (Rachel doesn’t answer)…
The to and fro chats across a table with noises going on around us (Rachel can’t sit still, is distracted, struggles to talk)…
Trips, concerts, weddings, shopping, days out (Rachel won’t travel far from her home and won’t go anywhere without her husband)…
What’s the point in having a friend like me?
I don’t get invited to anything anymore and it’s excruciatingly painful to see photos on social media after an event and know it wasn’t worth bothering to invite me because my behaviours in the past have given the impression I don’t care, I’m disinterested or simply too unreliable. I am in bits now thinking of how my absence is translated into disinterest. Looking like I don’t care is so far from the real me who cares so very much about everyone that I ache with sadness.
Burnout means plans can seem mammoth, talking can feel really physically taxing, and pushing myself to meet expectation can feel that it’s sacrificial to my health.
There are days when things are quite simply impossible. The inertia can be suffocating.
In a previous post I mentioned how pushing myself into something I’m not ready for is like trying to enter a force field. I feel physically unable to move because I am too burnt out to do something others find simple.
I’ve perfected the art of life without a plan because I simply can’t always choose how my day will go.
Choice. There’s a luxury.
So here I am with my pills and my three cups of tea that my husband brings me each morning, trying desperately to wake up. I can be awake for several hours before I can cope with a conversation because I can’t hold onto or process verbal information too well until late morning. I may open my eyes at 7 or 8am but my first interaction with a human might be 11am. I need periods of sloth-like behaviour with slow moves and often isolation. And it’s not just accommodating other people’s words that’s difficult, it’s also difficult to accommodate their presence.
I usually can’t eat in the morning. I’ll eventually have a small, late breakfast if you can promise me I can have it in solitude but otherwise, no thank you. I tried forcing myself to have breakfast every day a couple of years ago but I’ve since given up.
I’ve learnt, reluctantly, that the best way to live with burnout is to live with it: go with it, don’t fight it, listen to my natural rhythms, don’t force anything. Burnout is a big fat NO, a huge great ENOUGH, an in your face STOP IT. It’s not an enemy, it’s not to be fought, it’s a reminder that humans are not invincible, and that pretending, pushing oneself, comparing oneself with others and fitting in are really very unwise. Doing what others expect of you (and what you think is expected of you) leaves you with confusion about and no energy for what you really want to expect of yourself.
I have a ongoing sense of “What was it that I wanted to do?”
Accepting lost days is incredibly difficult. Feeling inactive and unproductive is not something that comes naturally to me. I am unrealistically ambitious and optimistic on a regular basis, and see life and the world as chock-full of opportunities, activities and things to get passionate about. It’s hard. It’s so very, very hard. Believe it or not I do still want to do everything.
Encouraging and applauding aspies and autistics for fitting in and being conventional, for holding down a 9-5, for functioning as “normal”, for affecting great socialising skills, for being independent and self-sufficient comes at a price because for many of us these things take too much – far too much – and are not sustainable. It’s Iike saying “Well done for not being you!”
It’s not that you’re asking too much of autistic people per se – in fact, much is possible – but that you’re asking the wrong things of autistic people.
We are burning out.
I’ve been suffering this way for years but just didn’t tell. I’m telling now. Because you really should know.
And the reason you should know is two-fold:
1. Because if you know me you should know that I am not unsociable or uncaring or a loner or any of the other things associated with people who withdraw from society.
2. Because there are thousands of others like me who are suffering and will continue to suffer and may not know until it is too late that they weren’t meant to conform, adjust and work so stupidly hard for a lie.
I’ve said it before and I’ll say it again: never underestimate the hard work an autistic person has to put in to fit into your world. Never underestimate that or the fallout that is inevitable. Think about how so much of life for autistics is all about “Well done – you’re managing to not be like yourself again!”
Have you any idea how tiring not being yourself is? It’s counterproductive. Anything that might not have been seen as autistic about me but perhaps just a quirk has become exacerbated by the trauma and exhaustion of the lifelong efforts to hide it, and now plays out as a disorder. I am more disordered the harder I try not to be. I’m am more introverted the more I try to socialise. I am less satisfied by life the more I try to “get out more”. I will never get this right because The Model For Life we’re all given by modern society, films, books and TV is based on not being autistic, on not having my levels of anxiety, on not needing so much space, on not getting ill from trying to be conventional. People’s ideas about being a good friend will always clash with my energy levels. Tiny worries will now always exhaust me days after they should have been forgotten.
I believe very strongly that I will now live in burnout forever, that there is no escape because there is no escaping society.
There is such a thing changing society though. It can’t come soon enough.
Occasionally I will forget just how badly and by just how much society has damaged me, and just how limited my life has become, and I will find myself making plans I can’t fulfil. Then I become upset and distressed at the time lost on effort and preparation for what will slowly become evident is unachievable. These are awful times, heartbreaking times. I become swept up in self-loathing, thoughts of failure and anger at myself for even trying. I can be angry at the world too, for not supporting me, for not stopping me, for not appreciating me just as I am.
But mostly I remember I am just another middle-aged autistic wife and mother with burnout, who has to understand herself, look after herself and be kind to herself in a way the non-autistic world simply doesn’t have the rule book to be able to do for us. Yet.