What did I do wrong? Maybe nothing
Dropping the myths of perfectionism and control to be in our imperfect bodies and lives
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Content note: mention of abusive experiences
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“You don’t have to be perfect. Not a single human being in this world is perfect.”
Last week, I cried when Kristin Neff’s voice, on a self-compassion meditation, told me what should be so obvious.
Because despite having heard this kind of message probably a thousand times, during my decades in the personal development and wellness “worlds”, I still don’t believe it. In fact, these spheres of influence have played a significant role in the maintenance of my sneaky perfectionism: the self-help books and wellness hacks told me that if I could just get it all figured out, I would heal myself and be OK again.
I would be good enough.
This stubborn, outdated part of me still believes that I am the exception to the inherent imperfection of the whole of humanity. That I have to be perfect to be good enough, to be loved. The all-or-nothing thinking that comes as a side order with autism doesn’t help.
And, in terms of this belief system, nowhere is there more evidence of imperfection than in being chronically unwell despite having tried everything within my means to get better and be a more functional human being, for the past 14 years.
What did I do wrong?
Often, when I have a CFS (Chronic Fatigue Syndrome) flare, which has been more frequently lately, I think it’s my fault. I desperately try to work out what I’ve done “wrong” to cause it. Did I suppress my emotions? Did I do too much on a physical level? Did I fail to be my authentic self in every moment, perfectly?
Similarly to all the years I cross-examined the actions judged as weird or inappropriate by others who didn’t understand my neurodivergence (even I didn’t yet understand it!), I’ve been looking for clues as to my role in things, because that felt like the one area where I could exert any power. There’s little more inducing of a feeling of powerlessness than having a disabling condition, especially one that is impossible to predict due to its fluctuations.
Lately, I’ve begun to wonder if it would serve me better to surrender to this fact: that at least some of the complex interrelated web of factors causing me to feel so unwell are beyond my control. It could be the high pollen count triggering inflammation and mostly bedbound days; it could be meeting a friend for coffee last week; it could equally be my menstrual cycle or the emotional stress of that argument with my partner. It’s so overwhelming to untangle that there’s a sense of relief in releasing the illusion of control, accepting that I’m doing the best I can with the hand I was dealt.
Following the breadcrumb trail
And that hand was a tough one to start with, let’s face it. On chronic illness groups and forums, there is often a sharp divide between those who believe our illnesses can be recovered from, and those who believe it is a life sentence. Often, a further divide exists between those who believe the causes are solely bio-physiological (viruses, genetics) and therefore wholly outside of our influence, and those who have a more holistic view, allowing for emotional factors (trauma, suppression).
I believe both have a part to play, and try to resist simplistic solutions. I’ve tried a multitude of emotional release techniques as well as supplements and nutritional changes, and have stripped my lifestyle back to the bare minimum of demands, yet, if anything, I’m more unwell, perhaps because my body is now able to speak even louder without the constant background noise. Still, sometimes, the lure of genetics as the answer - to “let myself off the hook” - is compelling.
Sitting in my sunny garden recently on one of those days when that was all I could manage, I had a sudden wondering: How come my lifelong severe eczema became dormant six years ago but the CFS, mild until then, has been taking centre stage since?
I became curious about the link between the two conditions, and sure enough, Google told me there was one. Atopic conditions like eczema, asthma and allergies (the holy trinity I’ve been blessed with since I was a baby) are hereditary, and significantly increase the risk of CFS. The underlying physical mechanisms involve the immune system and chronic inflammation. My somatic therapist, also neurodivergent and a chronic illness veteran, has often pointed out to me that internalised, suppressed anger is a core factor in CFS, and it appears externally in eczema, the itchy, inflammation on the surface for all to see.
I remember having one of my worst outbreaks of eczema at sixteen, when my father’s abusive behaviour in our home had fallen to new depths, but I had also begun to stand up to him for the first time, and the power struggle was terrifying. The next big flare up was at 24, when my long-term boyfriend and great love cheated on me and left me for a 16-year-old.
And my CFS? Symptoms appeared for the first time after I had to leave my rented home with my three-year-old son due to abusive behaviour from two neighbours, including physical threat. We ended up moving three times that year, and I kept going because I had no choice, but I was lying down all morning most days while my son was at nursery, unable to work. There was also a huge amount of mold going on in the house we ended up in, though I didn’t realise until we’d left. This stuff is so multi-layered, but the clues have become clearer in retrospect.
Anger and her sister, grief
Back to the anger. Being neurodivergent in a neurotypical world is a recipe for suppressed anger and frustration. Our “nos” aren’t heard or honoured. Our “yeses” are dismissed, ridiculed and misunderstood. The line between “me” and “other” constantly blurred as the innate human needs to belong and feel safe take precedence over our need to be ourselves. The masking that serves for survival begins to turn in on ourselves.
Perhaps, just as it wasn’t my fault that this anger was forced to go inside, the ways it shows itself in my symptoms is not my fault either. Nor is it my fault that this all takes a tremendous amount of time, and most of all, safety, to unwind.
And for another twist: I’m pretty sure all this anger isn’t just mine, especially since I first developed eczema at only three months old. My mother’s anger, as a likely undiagnosed neurodivergent (autistic) person herself; the inter-generational anger of my grandmothers, who experienced domestic abuse and abandonment; my father’s (likely ADHD) anger, as the boy who was separated from his mother at eight, passed around from pillar to post and neglected by his absent father and new stepmother while relegated to boarding school.
As well as anger, there is so much grief. Not only the grief of the painful childhood and struggling decades of the late-diagnosed experience, but of the loss of the ability to participate in the world in the ways we expected to be able to.
These words from Lisa of My (Long) Covid Pause in her beautiful essay, How long does it take to grieve a body? pierce to the heart:
“It’s like freaking groundhog day to grieve the wellness I had, and the illness I had no way of preparing for.”
I responded:
This past week, I realised that I was (not so) subtly rejecting myself through rejecting the way my body is showing up. Something fell into place: empathy landed, empathy and compassion and huge gratitude for my body who has done such an incredible job, both in the surviving and pushing through AND in the refusal to do that any longer.
The wisdom in the collapse because enough was enough. This new, slower, more reluctant body is my friend and companion too and being frustrated and angry at her for not functioning as she “should” was misdirected anger. The rage and grief now can go where they rightfully belong.
In my own time
As I imperfectly release perfectionism, I’m catching up with where I am really at. Even with being signed off work two years ago, I still have very high expectations of myself, but this is beginning to shift noticeably in the last few weeks as I take subtle layers of pressure off myself that I hadn’t previously realised was there. The Visible heart monitor and app is helping by showing me what’s realistic for my current energy envelope, what takes energy even when it appears to be “nothing much” (washing dishes, walking very short distances, even standing), and how “stacking” activities (doing several things in a row, even seemingly small ones) as well as emotional stress are two of the primary immediate triggers for flares the next day.
As I work within the loose structure I’ve created for myself, containing alternating periods of light activity and rest, I’m beginning to let go and trust the process instead of fighting it. Something has shifted in that I’m less inclined to see my health as a puzzle to solve, which I’m going to get a medal for figuring out, the way I got gold stars and A’s in school as a way of proving my worth.
I’m not wrong, bad or pathetic or less than if I can’t “get there”.
Even if I never have a busier or more outwardly productive life than I have now, and don’t have any more energy than I do now, that’s OK. And being angry at myself and my body for not being able to perform in the way I want it to is anger better directed at all the f***ed up sh*t that made life so inhospitable to souls like me.
No doubt, since this journey is not linear, I’ll continue to be thrown back into the perfectionist attitude from time to time. But I’m getting an imprint of this:
It’s really OK to be living my days the way I am doing.
And I’ve never allowed myself to do that.
It’s absolutely necessary, because I cannot heal if I’m just continuing to perpetuate the same things internally that happened to me in my formative years by being hard on myself.
In the words of Amber Horrox 🗝️Warrior Within:
This is what we’re really unravelling.
Not just the pain,
but the patterns we built to survive it.The masking.
The performing.
The quiet belief that we have to earn our place in the room.And something shifts when that drops.
When you’re met… as you are.
I’m trusting my body knows what she is doing, and that she has not only done what is necessary all along, but will continue to do so.
It’s my job to listen, and be patient as I enter deeper into this dialogue with my mind-body-soul that has been whispering, then getting ever louder. To listen, and be patient, even if very little seems to change day to day, and even when it seems like I’m going backwards.
The fear in the symptoms and the fear OF the symptoms
I can’t talk about anger and grief without also talking about fear. In this drastically reduced lifestyle, as I make space and stay with my “new, slower, more reluctant body” and stop running from all that has been stored up, the emotions and stored survival responses are slowly surfacing and being felt.
These are glimpses from the past couple of weeks:
I was in a CFS flare, lying down resting, when tremoring began in my left leg. I let it continue. Other times, my legs feel restless and my body twitches, as if it wants to run. I let it move, even if it’s in bed.
During a yoga nidra, which I usually find so relaxing that I fall asleep, I felt strong embodied emotions that harked back to a traumatic time in one of my relationships. As I fell asleep, I felt suddenly as if one of my cats had landed on me, and jumped, but there was nothing there. When I came to, I felt gripped with fear. A fear that I knew was of the past, yet felt so present right then and there.
My latest surge of CFS flares - and a worsening baseline - came after a car accident in September 2025, which those of you who’ve followed me for a while have already heard a lot about. I’m only now realising the possible link: that my body has felt profoundly unsafe driving and going outside the home ever since, and I’ve started to wonder if it’s been amping up the symptoms to keep me safe inside. Even after several sessions of bilateral processing trauma therapy focused on the accident, I still sometimes need to pull over and breathe when driving, and my social life is practically nonexistent. The fear is masked by my symptoms, and I feel safest when in my bed.
Maybe, even there, something is changing, as I drop into deeper acceptance of where I am. Yesterday, I went into town to do a couple of unavoidable errands and treated myself to a coffee and cake, a rare outing for me. I knew it would tire me out, but instead of feeling locked inside my own world, self-protective and white-knuckling my way through, I noticed more curiosity, openness and mindfulness coming online. I enjoyed watching people talk to each other over their dogs and delightedly picked up a Make-your-own-Bohemian-scrapbook kit in a “Free” pile outside someone’s house.
Symptoms kicked in with force towards the end of my (decaf) coffee and the usual desperation to teleport home began, but I just took it one step at a time, tried not to panic, and trusted. I drove home without music, just breathing, and went to bed without guilt or shame when I returned, happy I’d managed a couple of hours out.
Written in the context of recovery from trauma and mental health impacts, this quote from Lisa Wall of “SHE RECOVERS” in “Recovering From Overcoming” spoke to me:
“…being impacted by trauma is not evidence of weakness; it is evidence of humanity. One of the most liberating shifts in recovery may be releasing the belief that healing must mean overcoming trauma or the past.
Healing may instead look like telling the truth, receiving support, being witnessed, allowing joy, building community, choosing rest, getting to know ourselves, or making peace with being unfinished.”
While tracking patterns to identify known causes can be helpful, I find more empowerment in identifying what is next. I ask myself how I can reach for more aliveness, nourishment and self-compassion right now, regardless of symptoms.
Things I’m doing to nourish myself - and a reframe
Free 25-minute somatic practice and IFS (Internal Family Systems) journalling sessions on a wonderful group for those living with chronic conditions and on the healing journey. I love these because they are drop in, cameras off, and mostly less than half an hour long. If any of you want to join, drop me a DM.
Lots of reading, especially in my garden overlooking the field. I just finished the wonderful “The Dictionary of Lost Words” by Pip Williams which made me cry and feel immense gratitude to the women who paved the way for women’s rights in the early 20th Century, as well as appreciation for different ways we can make a difference, other than being a front-line activist (especially relevant to those of us who are more “words” people than “protest march” people, or who live with disability).
I’m now reading “The Tyranny of Lost Things” by Rhiannon Lucy Cosslett, which somehow manages to indulge both my 1970s nostalgia (despite having been born in 1980) and my nostalgia for my 20s, complete with mushroom trips and endless parties. I’m kind of glad I’m not back there now, just for the record! I quite like being clear-headed these days :)
If you’re reading anything good, I’d love to hear!
A 4 week online singing for wellness course, led by the magical Tarisha, one of my biggest singer-songwriter inspirations, who teaches and inspires from her 16-year journey with serious health conditions.
I leave you with this reframe, inspired by the course:
Being well is not about having a perfectly functioning body. It’s about:
Living well.
Loving well (ourselves first and foremost)
Living with joy, gratitude, receptivity, love, even amidst the challenges.
How we think about and relate to our health and illness, and how we talk to ourselves, can make the biggest impact on our day-to-day sense of wellness. While CFS is real, and the impacts are real, I know that my fearful and self-judging thoughts in the context of it cause me the most suffering.
And it’s absolutely not about a spiritually bypassing “Positive Thinking” obsession, controlling every thought and feeling. A well person embraces all that is happening, with self-compassion, including the fits of anger and frustration and When the f*** is this going to end?
Over to you. I’d love to hear where you’re at on your healing journey, whether you’ve been treading this path for decades or a few months. What moves in you within the themes of what I’ve shared, around suppressed emotions, self-talk and adjusting expectations of one’s self, or anything else?
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I blamed myself for decades for not being well enough to do the things I wanted or felt I needed to do in life, for not being enough. I thought I'd done something to cause my illnesses, that all I had to do was fix whatever it was I'd done wrong and I'd be well. I was taught - trained - conditioned - to think that way.
Self-compassion has been my healing tool for the past decade or so. It won't cure my illnesses but it means I can live with them, instead of dying from them.
Thanks so much for sharing. It was when I read Kristin Neff's self compassion books that I finally began the process of healing. It shocked and saddened me how much self-compassion was missing from my life. (i actually read wild motherhood right after fierce self compassion which also helped so much with my self compassion and creative inspiration as a depressed new mother)
I really feel what you've expressed here, your insight is very encouraging.