Finding My Tribe: How a Simple Facebook Group Became My Lifeline
Or: How I Accidentally Created Community While My Brain Tried to Explode
Right, let me tell you a story about what should have been simple but turned into an absolute arse-about-tit marathon project.
⚠️ Fair warning: This is a long post. A marathon to read, just like it was a marathon to write. You might want to take it a bit at a time. Grab a cuppa, settle in, or bookmark it and come back. I'll still be here.
I've been thinking for ages about setting up a hyper-local spoonie group on Facebook. Sounds straightforward, doesn't it? Click a few buttons, write a welcome post, done. Except when you're a spoonie, nothing is ever that simple.
For those who don't know me yet: I live with Functional Neurological Disorder (FND), ME/CFS (Chronic Fatigue Syndrome), Fibromyalgia, hemiplegic migraines, episodic migraines, and dissociative seizures. It's quite the collection, and together they've rather comprehensively stolen my life. I can't drive anymore. I can't just pop out alone. Can't walk unaided. Some days I can't get out of bed. And some days I can't talk at all – the words just... vanish somewhere between my brain and my mouth.
I can't make plans either. Well, I do make plans, but I often have to let people down. And that's not who I am. It's heart-crushingly upsetting every single time. And if I get overwhelmed, I can suffer a dissociative seizure, which rather puts paid to any plans I might have had for days.
I'm also losing my hair, which is just another delightful addition to the collection of losses. But here's something good: I've found the courage to embrace wigs, and that's turned out to be so much fun. I never thought I'd get very simple, normal joys like this back. I can look at myself in a mirror now without feeling like a stranger is staring back at me.
I have the concentration span of a goldfish these days. Some days, I can't even follow a one-step instruction because my body and brain simply do not compute. In a past life, I was a Marketing Manager – I know, hilarious, right? These days, I get confused using the TV remote. The irony isn't lost on me, trust me.
What I thought would take an afternoon took me and Paul and me over five weeks. My brain felt like it was going to explode multiple times. But thanks to my lovely purple-bearded virtual hero Paul (who is also my real-life bearded actual hero), we finally did it. Two private Facebook groups are now alive: Burntwood, Lichfield and Beyond Spoonie Connect for us spoonies, and Burntwood, Lichfield and Beyond Spoonie Carers Connect for the amazing people who care for us.
And honestly? It's changing my life.
Why We Need Our Tribe
Here's the thing about chronic illness that nobody tells you until you're living it: you lose so much more than your health. You lose your job, your social life, sometimes your friends. You lose the person you used to be. I lost my sparkle for a long time.
It was important to have a separate group for carers too. A space where they can chat, vent, swear when we've "done this again," rant about the frustrations, and make meaningful connections with other carers who truly get it. You carers are so important to us spoonies. You're our personal heroes. But you need care and support too, and sometimes that means having a space where you can be brutally honest without worrying about how we'll feel about it.
But then something magical happens when spoonies start talking to each other. We get it. We understand how a poor night's sleep can turn your entire world upside down. We know that mundane tasks that used to take five minutes now feel like mountains we have to climb just to get through the day.
And the beautiful thing? I'm rarely alone on insomnia nights. Just pop a "hi, anyone up?" into the group and nine times out of ten, there's someone there. Someone else battling their own Ellyllons at 3am, someone who understands exactly why you're awake and in pain and frustrated and scared.
The Things Nobody Talks About
Cognitive dysfunction drives me absolutely mad. I can't retain anything. My words get mixed up, jumbled, lost somewhere between my brain and my mouth. I'm forgetful in ways that deeply upset me.
I can't go back to my marketing manager role because tasks that used to take five minutes now take me days. Sometimes I forget how to use the TV remote. Sometimes I don't know what day of the week it is. I even asked my GP if I had dementia or Alzheimer's because I was so worried, so frustrated, so frightened.
But my fellow local spoonies? They get me. They understand. And I get them too.
This matters more than I can express. Because when you're chronically ill, no two days are the same. Pain is your constant companion. We all suffer with different Ellyllons (those little Welsh mythological demons that perfectly describe our symptoms), but we understand how debilitating chronic and invisible illnesses are.
In this group, I feel at home.
The Little Victories and the Long Defeats
We celebrate each other's little wins – getting dressed, brushing teeth, making it to the kitchen. We comfort each other on bad days and share tips and bits of advice that might help. Because here's the cruel joke of chronic illness: one good day, one good morning, even one good hour can lead to days of crushing pain, depression, and fatigue if you've overdone it.
But the group is there for each other. Always.
I am such a happier person knowing this local spoonie tribe exists. We live in the same area. We know the same places, have childhood memories of our town, stories to share. Most of us live within five miles of each other – some literally in the next street. That proximity makes a huge difference.
I've got a virtual social life now. And hopefully, lifelong friends.
Maybe someday, small groups of us, or even a larger gathering, will be able to meet in person. That would be brilliant. To have local people I don't have to apologise to for my speech difficulties, shakes, or tremors? People I don't need to feel self-conscious around because they're living it too? People I can laugh with about the sheer absurdity of it all? That would mean getting a piece of myself back.
No explaining. No apologising. No watching people's faces as they try to hide their discomfort. Just... being. With people who get it.
The Vicious Circle Nobody Warns You About
Chronic pain creates this vicious circle that's hard to explain to people who haven't lived it. The pain causes fatigue. The fatigue makes the pain worse. The pain and fatigue cause anxiety and depression. The anxiety and depression make the pain worse. Round and round we go.
And the isolation makes everything worse. Having someone other than your family – people who love you but who also have to care for you day in, day out – to talk to makes a massive difference. It takes pressure off your home life. Your partner doesn't have to be your only outlet, your only support.
Paul is my hero, truly. But even heroes need a break. And I needed people who understand this life without having to live with me while I'm living it.
Beating Yourself Up (And Why We Need to Stop)
Invisible chronic illnesses take away life as you knew it. They turn everything upside down, and the ripples spread to everyone you love. You lose friends. You don't see family. You might not leave the house for days or weeks. Some days you don't even get dressed or brush your teeth.
I know I couldn't hold down any kind of job because I genuinely don't know how I'm going to be from one day to the next.
Yet there are plenty of spoonies who do work. For some, it's manageable, if exhausting and painful. For others, the broken benefits system means they simply don't have a choice – they have to work despite everything.
And let's talk about our NHS. Weeks, months, years seeking diagnosis, treatment, medication, therapy. There's still so much dismissal and misunderstanding of invisible and chronic illness. In our local area, you can count on one hand the specialists who can actually help 99% of us spoonies.
But we keep going. We keep on keeping on (KOKO, as I like to say). We give each other advice and tips about what works for us. We support each other through the medical gaslighting, the dismissive doctors, the people who think we're just being dramatic.
Walk a Week in Our Shoes
Being accused of having a weak pain threshold. Being told you're just forgetful and clumsy. Being accused of faking it.
Our answer? No matter what Ellyllon demons we live with – walk a week in our shoes, nd you'll understand. Actually, make it a day. Hell, make it an hour.
People don't understand the toll that mental tasks take. Something as simple as trying to talk, or dealing with an emotional situation, impacts not just your mental health but yoalso ur pain levels and fatigue. Sometimes just typing a message can wipe you out. I often forget what I was saying halfway through.
This blog post? It's taken me weeks to write. It will probably take you as long to read. But I feel these words are important - to all spoonies, to carers, to help people understand what this life is really like.
Setting up both the private spoonie group and the separate spoonie carers group took even longer. But I'm proud that Paul and I have created something good out of something devastatingly bad.
My purple-bearded hero has set up digital help for me – voice notes, AI tools, spell checkers, grammar checkers – all manner of things that help me write and express my feelings. Without these tools and without Paul, none of this would have been possible. He really is my hero.
The Harsh Reality
Creating this group has made me realise something difficult: I couldn't hold down a job right now, mentally or physically. I've made my peace with that, mostly. But it's a long-term goal, something to work towards. And I'm desperate for therapy to help me process all of this and maybe, eventually, get there. I'm still waiting though. The NHS waiting lists are... well, they are what they are.
What I'd love? To be able to drive Ferris, my Figaro. To walk unaided. To talk normally. To be normal – well, I've always been on the weird side of normal. An old manager once called me "witchy," and I wore that badge with pride. I'd love to get back to that version of normal. I'm kind of normal.
But right now, my immune system is shot to pieces, so I catch everything going around. The cold, wet weather plays absolute havoc with my joints and pain levels. Honestly, British weather should be officially classified as the 13th Ellyllon – it's cold, damp, unpredictable, and makes everything hurt more. At least the other Ellyllons have the decency to be consistent.
I don't know what I'd do without my online friends now. Even though one-finger typing takes forever. Even though there's no point trying voice notes or voice-to-text because of my aphasia.
But maybe, just maybe, one day soon I'll make it out and actually socialise occasionally with people who understand this life I never chose for myself. I just might have a mini social life again.
Finding My Sparkle (Or At Least a Glimmer)
Am I recovering from my Ellyllons? No. Let's be honest about that. But my heart is being lifted by this group, and I think a glimmer of my sparkle is coming back.
The bad days though? I don't have the words to describe how bad they are. And that's saying something for someone who used to make a living with words.
But I've found a little bit of light again. That's thanks to my hero husband-carer-chauffeur-cleaner-cook-PA Paul (who is also a fellow teaspoon), my son Connor, who takes such good care of me, and every single person in our spoonie tribe.
As I said, it's taken me so long to write this. In that time, both groups have exceeded my wildest expectations. I'd like to thank each and every one of you for being there - whether you're a spoonie in one group or a carer in the other. Whether you actively chat or just lurk and hopefully find comfort in knowing you're not alone – thank you.
A massive thanks to the people who've stepped in as admins and moderators for both groups. You are genuinely awesome.
To all the spoonies and spoonie carers: you've made my heart swell with pride. Our little acorn of an idea is growing into something beautiful. My heart remembers what joy and happiness feel like now, yes, even on bad days.
It's amazing how fast a little act of kindness, driven by loneliness and desperation, has brought us all together.
And long may it continue.
Join Us
If you're in the Burntwood, Lichfield, or surrounding areas and you're living with chronic illness, come find us on Facebook at Burntwood, Lichfield and Beyond Spoonie Connect. It's a private group, a safe space for us to share without judgment.
And if you're caring for someone with chronic illness? There's Burntwood, Lichfield and Beyond Spoonie Carers Connect - a separate private group where carers can support each other, share tips, and have their own space to talk about the challenges they face. Because carers need their tribe, too.
We're your tribe. We get it. We get you.
And you're never alone at 3am.
Love,
Sha x
#SpoonieLife #ChronicIllness #FND #MECFS #Fibromyalgia #SpoonieConnect #WheelyHappyDays #BurntwoodSpoonies #KOKO #YouAreNotAlone #ThreeGoodThings #SpoonieStrong #ChronicPain #InvisibleIllness #SpoonieWarrior
Three Good Things:
- The group exists and is thriving
- I've found my people
- My sparkle is slowly coming back
Today's Mantra: "Surviving is thriving. And thriving is surviving. Both are enough."
Our Group Mantra: "We keep on keeping on" (KOKO). We celebrate the small wins. We hold each other up on bad days. We're never alone at 3am. This is our tribe, and together we're stronger than our Ellyllons."
* ELLYLLONS: Welsh mythological creatures - tiny mischievous demons who live in caves and delight in tormenting humans. Perfect for personifying chronic illness symptoms, innit? Mine include: Fatigue the Merciless, Brainfog the Confuser, Pain the Persistent, Tremor the Shaker, and their mate Balance-Wrecker. They're rubbish houseguests and absolutely refuse to leave. The British weather is honorary Ellyllon number 13.