Who am I? Losing Myself to Chronic Illness

Grappling with a long list of diagnoses and a neurodivergent child.

Photo by Maksym Kaharlytskyi on Unsplash

Diary of a Chronically Ill Neurodivergent Female: Week Ten

Somewhere between the third GP referral, the eleventh EHCP (Education and Health Care Plan) meeting, and my fifteenth prescription for a condition I still can’t pronounce, I realised I’d lost myself. Not in a poetic, eat-pray-love sort of way. I mean genuinely, bewilderingly lost. As in, “Who even am I anymore, and why is there a half-eaten fish finger in my bra?”

I used to be someone, you know. I had interests, opinions, a wardrobe that didn’t consist entirely of leggings and oversized jumpers. I had hobbies! A skincare routine! I read novels for fun instead of neurodevelopmental reports. But chronic illness and parenting a neurodivergent child teamed up like a double act from hell, and now my entire life feels like a chaotic, never-ending episode of Survivor: NHS Edition.

Let me explain.

The slow unravelling of self

It started quietly. A few aches and pains here, a vague fatigue there. Nothing dramatic. I assumed I was just tired. After all, parenting is exhausting, especially when your child doesn’t fit neatly into the tidy box that society labels as “typical.”

Then came the weird symptoms. The joint pain that wouldn’t go away. The mysterious digestive issues. The bone-deep exhaustion that made me feel like I’d aged thirty years overnight. I began to suspect I wasn’t just “a bit run down.” I was falling apart. My body had clearly decided to throw a coup and didn’t even send me the minutes from the meeting.

Eventually came yet another diagnosis (my husband says I like to collect them)—another chronic illness—with a side helping of “oh, and here’s a another one too, just for fun.” Mine has a long name and a list of symptoms that could fill a short novel. But honestly, it doesn’t matter which one. The real story isn’t the illness itself. It’s the way it consumes everything—your energy, your time, your identity.

Meanwhile, in parenting land…

As I was grappling with my failing body, I was also navigating life with a neurodivergent child. A beautiful, creative, brilliant child who sees the world in a completely different way—often loudly, messily, and with an alarming number of sensory aversions to anything green or slightly damp.

I quickly became an amateur expert in everything from educational law to executive functioning. I could write a dissertation (in addition to currently writing up my PhD thesis) on the difference between an EHCP and an IEP (and yes, I do dream in acronyms now). I learned to translate between teacher-speak and my child’s lived reality. I became a co-regulator, an advocate, a human fidget toy, a walking social story.

But somewhere in between paediatrician appointments and meltdowns in supermarket aisles, I stopped being a person and became a full-time support unit. I didn’t even notice it at first. You get so used to firefighting that you forget what peace feels like.

I miss me

I miss the version of me who used to stay up late watching documentaries just because she wanted to learn something weird and niche. I miss the version of me who danced around the kitchen to terrible 90s music without worrying if her hips would seize up. I miss having conversations that weren’t entirely about medication side effects, educational provision, or whether school dinners have enough beige options to avoid a sensory crisis.

Even when I get a moment alone (rare and precious), I don’t know what to do with it. I sit there in a fog, too tired to read, too wired to rest. My brain has become a filing cabinet of appointment dates, diagnosis letters, therapy strategies and dietary requirements. My soul feels like it’s been buried under a pile of laundry and NHS forms.

“But you’re so strong!”

Ah yes, the classic. People love to tell me how strong I am. I smile politely and thank them, but inside I’m screaming. I don’t want to be strong. I want to be horizontal with a cup of tea and no responsibilities. I want to be soft and silly and slightly useless sometimes. I want to be more than a medical case study and a care coordinator with an unpaid role.

Strength is overrated. I’d rather have a nap.

Humour as survival

If I didn’t laugh, I’d cry—and honestly, I’ve done enough crying this year to water several houseplants already. Which is ironic, as I kill houseplants just by looking at them. So I lean into humour like it’s a life raft. I make jokes about my dodgy joints. I find joy in the absurdity of parenting a child who insists on wearing noise-cancelling headphones while singing at full volume. I laugh when I realise I’ve taken my child to therapy but forgotten my own medication. Again.

Humour doesn’t fix anything. But it makes the unfixable feel slightly less unbearable. It’s the tiny spark that reminds me I’m still here. Still me, somewhere under the layers of pain and paperwork.

The invisibility cloak

One of the hardest parts of this whole situation is how invisible it all is. Chronic illness hides behind a mask of mascara and smiles (except I don’t even wear make up any more). Neurodivergent parenting looks, from the outside, like overanxious parenting or poor discipline (don’t even start me on the unsolicited advice from strangers). And when you live both realities, people often assume you’re just making a fuss or not trying hard enough.

But I’m not dramatic. I’m tired. I’m overwhelmed. I’m doing my best with a body that doesn’t cooperate and a world that doesn’t accommodate. And I know so many others—especially women—are in this same invisible, exhausting boat.

Finding scraps of self again

So how do you reclaim yourself when you’re constantly giving to everyone else? Honestly, I’m still figuring that out. But I’ve started with small things.

I write again, even if it’s just notes on my phone between appointments. I put false eyelashes on, even if I’m not going anywhere. I say no to things, even when I feel guilty. I let myself rest without earning it. I let myself feel angry, sad, bored, ridiculous—anything other than endlessly useful.

And I’ve started to talk about it. Openly. Messily. With humour and honesty. Because pretending to have it all together helps no one, least of all me.

You’re still in there

If you’re reading this and nodding along, please know this—you’re still in there too. Beneath the fatigue, the advocacy, the spreadsheets of symptoms and behaviour patterns—you are still a whole person. Not broken. Not lost. Just buried for a while under responsibilities you never signed up for but carry with grace anyway.

Take five minutes today to do something wildly unproductive. Dance badly. Scribble. Swear at the laundry pile. Daydream. Lie flat and stare at the ceiling. Whatever reminds you that you’re more than a medical file and a parenting strategy.

Because yes, you’re strong. But you’re also a human being who deserves to exist beyond the limits of chronic illness and care-giving. And maybe, just maybe, that fish finger in your bra is a reminder that it’s okay to laugh at the chaos sometimes.