The Chronically Ill Club: Ten Things I Wish I’d Known Before I Joined

By Antonia—chronically tired, often thinks she's hilarious, and definitely writing this while wearing two heat packs and an expression of mild defiance.

Welcome to the Club. Here’s your hot water bottle and a medically necessary sense of humour.

Let dive in. if you’ve found yourself in the Chronic Illness Club. It’s like the worst secret society—there’s no invitation, no glamorous initiation ceremony, and the only perks are a discount card for boots and a growing collection of slightly sad pyjamas. But you’re here now, and whether you’ve been in this club for years or just stumbled through the door clutching a referral letter and a bag of gin gins, let me tell you: you are so not alone.

This club isn’t glamorous, but it’s full of people who’ve learned how to laugh in the face of medical gaslighting, grieve lost futures while still making dinner, and juggle medications like an Olympic sport. And because no one gave me a manual when I joined, I’ve decided to write one. Here’s what I wish someone had told me when my life started smelling like Tiger Balm and bedtime at 6pm.

1. Rest isn’t laziness. It’s survival strategy.

By 6pm, I’m horizontal. Not in a luxurious, end-of-day kind of way. More like: if I don’t lie down now, my joints will mutiny and my nervous system will file for divorce. Friends used to joke about my “pensioner bedtime.” That was before they realised it wasn’t quirky—it was mandatory.

Rest is not weakness. It’s damage control. If I push too far, I’m not just tired—I’m a half-deflated balloon with brain fog and a body that feels like it’s been trampled by regret. Rest isn’t surrender. It’s strategy.

NHS Fatigue and Energy Conservation Strategies The Spoon Theory – Christine Miserandino

2. You’ll grieve things you didn’t even know you could lose.

I used to salsa dance. I used to play piano. Now I pace myself through showers and plan outings like military missions. The grief doesn’t hit you all at once—it creeps in quietly, when you see someone run for a bus, or when you realise a button-up shirt now qualifies as an accessibility hazard.

And it’s okay to miss the old you. That doesn’t mean you don’t love who you are now—it just means you’ve lived. And living comes with loss.

3. People will say things that make you want to roll your eyes so hard you see your past lives.

“Have you tried yoga?”“Maybe you just need to think more positively.”“Oh my god, I get tired too!”

Cool. When your fatigue makes you feel like your skeleton is made of bricks and regret, come back to me.

Some people mean well. Some are just catastrophically uninformed. You don’t owe every conversation an explanation. Save your spoons. Educate when you can. But also: give yourself permission to walk away from nonsense.

On Medical Gaslighting – BMJ Opinion What Not to Say to Someone with a Chronic Illness – Healthline

4. Fashion changes. Comfort is the new black.

I used to wear structured jackets and boots with a purpose. Now? I dress for survival. Give me soft seams, forgiving waistbands, and clothes I can peel off without a dramatic intermission.

I grieved the loss of my “real” wardrobe like it was a breakup. But guess what? Comfort wins. Every time.

Clothing and Chronic Pain – Versus Arthritis

5. Track your symptoms, not your shame.

Once upon a time, I tracked how many plans I’d cancelled and how many things I hadn’t achieved. That doesn’t end well. Now, I track what actually matters—pain levels, sleep, weather patterns, meds, triggers.

Your body isn’t a productivity tool. It’s a war zone. You don’t need guilt in the trenches.

6. Your social battery gets a downgrade. And that’s perfectly okay.

I love people. I also love subtitles and silence. I can’t do loud nights out anymore—not when it takes three business days to recover from a trip to the pharmacy. If I cancel plans, it’s not because I don’t care. It’s because I can’t.

Your real friends will understand. And the others? Let them go. You’re not a bad person for putting your health first.

Social Isolation in Chronic Illness – NIH Study

7. You will have to advocate for yourself. Even when you're shattered.

I’ve had doctors dismiss me, blame anxiety, or flat-out ignore my symptoms. I’ve brought backup to appointments. I’ve cried in hospital bathrooms. I’ve also learned how to speak the language of “respectable persistence.”

Bring notes. Bring someone with you. Bring fire if you need to. Your voice is valid—even if it trembles.

How to Be Your Own Advocate – Ehlers-Danlos Society PatientAdvocacy in Complex Conditions – Rare Revolution

8. You don’t have to be inspiring to be enough.

Not every story needs to end in triumph. Some days, all I achieve is making it to the end of the day without spontaneously combusting. And that’s fine.

You are not a motivational quote in a hospital gown. You are not a burden. You don’t need to be brave, upbeat, or aesthetically pleasing to have value.

9. Humour helps. Especially when everything else feels like chaos.

I smell like Tiger Balm. My brother literally associates that scent with me. I have a drawer full of braces, a freezer full of microwavable owls, and more conversations with pharmacists than my friends.

Is it ridiculous? Absolutely. Do I laugh about it? Constantly. Because if I didn’t, I’d cry so hard I’d dehydrate.

10. Find your people. They’ll save you.

Chronic illness is lonely—especially in a world that rewards stamina, speed, and Instagram-worthy recovery journeys. But then you find someone else who has a 6pm bedtime and a backpack full of medication. And suddenly, you don’t feel so strange.

These people will speak your language. They’ll get the nuance. And they’ll remind you: you are not alone.

Chronic Illness Online Communities – Psychology Today

Final Thought (cue dramatic lighting)

If chronic illness has made you feel old before your time, please know—you’re not broken. You’re living in a world that doesn’t bend easily for bodies like ours. But you’re still here. Still laughing. Still worthy of love, respect, and extra cushions.

This isn’t the life I planned—but it’s the one I’ve got. So I’ll keep writing. Keep laughing. Keep napping unapologetically.

And if all else fails, I’ll be in bed by 6pm, wrapped in a heatable owl, binge-watching subtitled shows and smelling faintly of mentholated resilience.