I first came across this term when I was browsing the subreddits for adhd and autistic women. After reading more about it I realised belatedly (in my 40s) that I have been coping with this my entire life. Strangely just finding a name to something formerly ambiguous can bring so much clarity and comfort, along with grief. Grief: for all the blame, self-blame, guilt. shame, exhaustion I could have avoided if I had known earlier. But I feel like as a 80s kid it is not so much a late diagnosis, but rather we had to wait for the world to become more aware.
I have many autistic and adhd symptoms, but I consider this one of the most disabling in my life. I am still paying for the consequences now, such as facing expensive dental bills for the rest of my life because I refused to brush my teeth as a child. That is just teeth, and to an extent can be solved with money, but what about all the psychological trauma that came with the inability to do important things, and with it the labels of being lazy and irresponsible being plastered all over me for the formative years of my life? I still have strong negative feelings for myself till today. It is strange no matter how many accomplishments I have made or how much love I have received later in life simply cannot overcome all the negative reinforcement I have experienced while growing up.
As a child, I couldn’t do homework. I just couldn’t. I would carry the anxiety with me until the very last minute, and then I would panic. It was the same when I had to study for exams. My working memory was poor (and is still poor), I couldn’t focus – that made studying very hard so I would avoid it till the last minute and then panic. These led to disastrous consequences for my academic performance of course, so it led to more blaming and shaming. Also, imagine having to exist perpetually either in the anxiety of avoidance or the fear that comes with panic. My nervous system was constantly in flight or fright mode.
Thankfully I found other things that I was good at later on. I picked up coding and design on my own in the late 90s, when learning resources were scarce and most people didn’t know how. If I was interested in something I had an insatiable curiousity, leading me to learn new skills quickly in a hyperfocused state. I realised belatedly that I wasn’t bad at learning, I just had to learn in a different mode. But it was too late, the scars would always be there.
This demand avoidance would plague me as a designer. Because of how hard it is for me to do most things, I would complete deadlines in panic at the last minute. My first freelance stint was terribly unsuccessful as I developed a phobia of phone calls. Each time the phone rang I would freeze. Coupled with a fear of conflict, it made freelancing impossible. I ended up disappointing quite a number of clients this way. Without knowing what went on behind the scenes, I plainly looked irresponsible, and I myself felt like a terrible human being. Fortunately things did get better as I got older because I developed several coping strategies, but I paid the price with my health.
There is an accumulative effect. People are always forcing me to do things or I am forcing myself to do things. After 40ish years of life I feel exhausted, and I can never seem to recover from this fatigue, even if no one else is putting pressure on me right now. I just feel tired from having to live. I have to be very on the ball about my health because of my chronic illness so most days I keep to a strict routine, which tires me out too. It took me years to even get to a point where I can have a routine, instead of just shrivelling at the word routine. The fact that I can exercise everyday, eat my supplements, blog each week, read at least 52 books a year – is a miracle. I do these things even if I don’t feel like doing them, because I almost never ever feel like doing anything.
My partner is the opposite. She has to consciously stop herself from doing too much or else she’ll fall sick. I see her and immediately I understand what I am lacking. I feel like an abomination in this world like I should never have been born. Almost nobody understands the extent of the psychological fatigue I feel each day, how much I have to push myself each day just to stay alive.
What is the point of life if doing anything feels dreadful? I guess that is why I contemplated ending my own existence many times in my life. Yet there have been some bright spots that keep me going. I just don’t know if it all balances out. I don’t have it in me to bring suffering to others if I can help it, so I feel stuck. I can’t leave, I don’t want to be here, yet I have to continue forcing myself to keep on doing things I don’t want to. Which compounds the issue.
Some days I feel so exhausted that I just lie there and do nothing. But the inner critic appears and asks why am I being so lazy and useless. There is tremendous shame and guilt for “wasting” my life when there are a ton of other people who would do anything to be in my shoes. I feel worse doing nothing even though all I want is to do nothing, so I force myself to do something, anything. That exhausts me again, which makes me want to do more of nothing, which makes me feel more useless and lazy, and the vicious loop continues.
I think it is possible to find things that don’t trigger my demand avoidance. I love to exercise, for one. I go into a worse depression if I can’t exercise. Which is why I don’t wish to get sick, which is why I am covid cautious. I can’t imagine being bedridden – I honestly believe I wouldn’t survive long covid. It is already difficult enough when I am moderately healthy. So I practice covid precautions which requires mental attention, it is tiring to constantly worry about being infected again, it also attracts judgment from other people, activities I used to do freely like travelling and going to the dentist are now considered risky – they all add to my mental fatigue.
Pathological demand avoidance looks a lot like self-sabotaging behaviour. Why would anyone refuse to do homework when there are painful consequences? Why would anyone leave things to the last minute even though it is much easier to do a little bit each day? Why would anyone live in a mess? Why would anyone keep angering or disappointing people?
It has brought nothing but negativity and pain in my life, and continues to do so. But I just can’t will my brain to be otherwise. If I could, I would, because this is just inviting suffering into my life. I keep wanting myself to be someone else, I keep blaming myself for it. Can I ever accept that I am simply this way, and find a way of living that coexists with it?
The brain has a finite capacity to perform tasks. Most people have experienced mental exhaustion to a point where they simply cannot do anything else anymore, even if they still possess enough physical energy. Both autistic and adhd people can suffer from pathological demand avoidance, so one of the theories is that our different brain structure makes us more prone to it.
I don’t know about other people, but I think I have an exceptionally sensitive nervous system, so just the mere act of existing is tiring for me because I am constantly being activated by sounds, sights, people’s energy, my mind’s noise, etc. So having to do anything in a perpetual state of exhaustion is hard. I also think I have an impaired dopamine signalling system, so I don’t typically feel a sense of reward when I complete a task. Of course when I was younger I relied a lot on caffeine, sugar and states of hyperfocus, which made me burn out very frequently.
I am a lot better now in terms of energy management, but doing anything out of my ingrained routine is still hard and requires ongoing momentum. Intellectually I am aware that I need more self-compassion and self-acceptance, but it is difficult to break out of that inner judgment that exists, the subconscious desire to be “normal” like everyone else.
Knowing that I am neurodivergent is somewhat new for me – within the last one year or so. Hence this is a new journey for me, to navigate my life and self with this new understanding. I don’t think I have truly understood yet. But being able to give this ambiguous suffering a label is at least a consolation. I now know I am not alone.
I used to get into these tense situations with my partner because she didn’t understand why I simply couldn’t do some things. But ever since we contemplated we both may be neurodivergent we have increased empathy for each other. I think this is the gift of deepening self-knowledge. It changes everything: once we are able to relate to our selves in a different way, it will inevitably change how we relate to everything else.
I started writing this with a spirit of sharing, hoping that sharing my experiences would be helpful to some internet stranger elsewhere, midway through writing I started feeling extremely heavy after recalling the feelings I had when I was younger, but towards the end I suddenly realised I forgot the awareness that I have this condition is new to me, so there is still space to mould that new relationship with myself.