1. The Story Begins
Eighteen years ago, in April 2007, everything changed.
My husband Richard was injured in a rugby tackle playing for his beloved Bangalow team in Northern NSW. He was flown to hospital (over two hours away, and in another state!) and diagnosed a C4/5 complete quadriplegic. Just like that, our world shifted.
Our daughter had just turned four.
Two days earlier, on my birthday, I’d had my second miscarriage in a few months.
I was already grieving. Then came the call.
The helicopter pilot told me he wasn’t sure Richard would survive the flight. I drove two hours north in shock, with my mum beside me (she was over on holiday from NZ) and our daughter in her car seat. We were bracing for the worst.
When the helicopter finally landed and I saw him over an hour later, smiling, no visible injuries, I couldn't believe it.
“Don’t look so worried, I’m totally fine,” he said. “I just can’t feel my body.”
Classic Richard. Calm when it counts. No fuss or drama, just facts.
The year that followed was a blur.
Living near the Brisbane spinal injuries unit, so I could be in hospital every day learning how to do all the things I never imagined I’d need to know. Physio, care plans, navigating grief, figuring out what life would look like now.
We never had another child. That was just one of many things that changed forever.
And even though we were surrounded by kindness, I’d never felt so alone. Because unless you’ve lived through something like this, whether it’s your injury or someone you love, it’s hard to explain. The logistics, the heartache, the identity shift. It’s another world.
Back then, Facebook was new, and it definitely wasn’t what it is now. Remember those weird status updates "Kylie is ... enjoying a sunny day". (The focus was on sharing brief updates about what Facebook users were doing or thinking). Then there were those extra weird pokes?!!! Facebook groups were just rolling out ... and so I had this idea... maybe Facebook could be more. Maybe it could help people like me find each other.
So I started a group: Quadriplegic SCI Journey.
No big plan, no strategy. Just a hope that the people out there, all over the world, who got it, would find it. And they did, and there were!
2. The Rise
Once the group was live, people started to find it. First a trickle ... a mum whose son was injured in a diving accident. Then a woman whose husband had been injured (same level of injury as Richie, too!) in a rugby tackle, on the same day as my husband, but on the other side of the world - in Wales. We instantly connected, and PMs flew between us. Then others. From different countries, different backgrounds, but with one massive thing in common: life had changed forever, and they were navigating their new normal.
Suddenly, I wasn’t alone.
There was this beautiful, unexpected magic in those early days. People shared their stories. They asked questions - raw, real ones that you’d never say out loud at a dinner party. We laughed at the ridiculous stuff no one else would understand. Quads who'd been injured decades earlier offered tips, people vented frustrations, swapped equipment ideas and function hacks. It was messy and wonderful and human.
It didn’t matter if you were the injured person, a partner, a parent, a best friend, or a full-time carer. Everyone in the group got it. There was this shared language of lived experience (bowel routine, pressure areas, stuff I'd never even heard of before!). And for a while, it was one of the safest, most supportive places I knew.
But then… something changed.
People started joining who didn’t get it, not because they were new to the journey, but because they weren’t on it at all.
That’s when the trouble started.
3. The Challenges
The group had always been open to anyone impacted by spinal cord injury, whether they were injured themselves or loved someone who was. But a new kind of member started appearing.
They weren’t asking questions. They weren’t sharing experiences. They weren’t connecting in the way the group was built for. Something was off.
What we soon discovered is that these people were part of a known sub-community: devotees.
If you haven’t heard the term before, devotees are people who are sexually or romantically attracted to disability, often specifically to paralysis. Some are open about it. Some believe they’re offering love, appreciation, or even support. Many see themselves as allies. And some people living with disabilities welcome and even seek out those relationships, and that’s completely their choice.
This isn’t about judging anyone’s relationships. It’s about the impact on this particular space.
Because in our group, devotees weren’t initially upfront about their intentions.
They were joining under the guise of support.
They were messaging vulnerable members privately.
They were asking highly personal questions.
And in one disturbing case, someone even flew overseas claiming to be a “support worker”, only to be revealed as a devotee who had formed an online attachment through the group, causing huge distress to the person newly living on her own, with the SCI.
What had been a safe and supportive space started to feel murky. People were on edge. Trust was eroding. It was a really icky time.
The hardest part?
Some group members, particularly those with lived disability experience, felt strongly that devotees should be welcome. They saw it as acceptance. As consent. As personal choice.
And I respect that.
For them.
Truly.
But this group wasn’t built for that.
It wasn’t created as a dating space. It wasn’t a place for flirtation or voyeurism. It was built to be safe. Grounded. Supportive. Honest. A place where people could vent about bowel routines or share their struggles over a lack of support, losing friends or family members who just couldn't cope, or confusion with care plans, without worrying about who might be screenshotting their posts.
So we had to draw a firm line.
And that meant making a lot of people very unhappy.
The group became divided.
Arguments, nastiness.
Some accused us of discrimination.
Others asked us to shut the whole thing down.
And in the middle of it all, as an admin, a wife, a carer, and a woman just trying to hold her life together, I found myself back in that place of exhaustion and isolation I thought the group had solved.
That’s when we made the decision to cull the Facebook group. To strip it back.
To rebuild something that honoured what we set out to create; a space where people could safely share their real, raw experiences of life with SCI.
4. The Rules
Once the group had been stripped back and reset, we knew the only way forward was clarity. Not just in who the group was for, but in how we were going to protect the space moving forward. So I wrote a set of group rules - not because I love rules (I don’t😝), but because boundaries build safety.
Here they are, exactly as I posted them, and still stand by today (boy oh boy, they copped a lot of flack, and were very controversial!):
1. No racial, cultural or religious comments, posts or memes.
While they might feel fine or even uplifting to you, they can be deeply alienating to others. This group is neutral so that it can be inclusive.
2. No porn or spam.
Let’s keep it clean and focused. This is not the place for unrelated content or promotional dumping.
3. Absolutely no devotees welcome or allowed.
This group is about connection and support, not fantasy, voyeurism or hidden agendas. Many members have felt unsafe in the past, so we are extremely firm about this boundary.
4. Be respectful with friend requests.
Some people love connecting outside the group, others don’t. If someone doesn’t accept your request, let it go. Please don’t pester or take it personally.
1. Feel free to post about helpful products or equipment.
If it’s genuinely helpful to those living with SCI, and not spammy or salesy, it’s welcome.
2. Ask questions, raise topics, whinge, complain, or rant.
This is your space to be honest - whether you’re exhausted, frustrated, or just need to be heard.
3. Share your wins, your lightbulb moments, and your positive stories.
We all need reminders that joy, humour, and connection are still part of the journey.
4. One must-do: Introduce yourself when you join.
It helps keep the group transparent and personal. Let us know where you’re from, your relationship to SCI, and whatever you feel comfortable sharing.
5. The Shift
What I didn’t realise back then, in the middle of all the stress and moderation chaos, was that running the SCI group would become one of my most valuable training grounds as a business owner. Because what I learned through that group - the beauty, the burnout, and bloomin; heck, the boundaries, shaped how I lead every Facebook group I’ve created since (there have been quite a few!) Today I run two public, business-focused groups:
- Hello Media - Digital Marketing Tips: where I share strategy, content ideas, and support for small business owners navigating the wild world of marketing
- Positive, Passionate Business Women: a community for women in business to promote what they do, lift each other up, and connect with intention
In small, manageable groups over chaotic free-for-alls.
In creating safe spaces where people feel seen, heard, and respected. I don’t let just anyone join.
I don’t let it run itself.
And I never apologise for setting boundaries, but I openly share and remind people about why those boundaries exist. The SCI group taught me, in a really raw and real way, that people don’t need more digital noise; they need spaces that feel human.
If you're running a business and thinking, “Should I start a Facebook group?” my answer is almost always: YES! BUT ... only if you're ready to lead it with boundaries and purpose.
Because a group isn’t just a marketing tactic, it’s a community space. And community requires care.
Here’s what I’ve learned (the hard way) about what makes a Facebook group actually work:.
6. Seven Ways to Make Your Facebook Group Better
1. Know who it’s for, and who it’s not.This is step one. If your group is for women in business? Say so. If it’s for people navigating spinal cord injury as a partner or carer? Say so.
The clearer you are about who belongs in the group, the safer everyone feels once they’re inside.
2. Set clear boundaries (and stick to them).
Don’t wait for things to go pear-shaped. Set rules from day one. Explain why they exist. And when people push back? Stick to your values. Respect isn’t built by being overly flexible, it’s built by being consistent.
3. Welcome people properly.
This one’s simple but powerful. Ask people to introduce themselves when they join. Tag them in a welcome post. Make them feel seen. It’s the fastest way to create connection and encourage participation.
4. Keep it active, but not noisy.
You don’t need to post 17 times a day. But do show up regularly, with tips, stories, questions, behind-the-scenes moments. The goal isn’t to dominate the feed, it’s to create rhythm and presence.
5. Quality > Quantity. Always.
I’ve intentionally kept all my groups small and manageable. I’d rather have 150 engaged, respectful, present members than 5,000 who never comment or cause chaos. Connection doesn’t scale unless you’re nurturing it.
6. Your Facebook Page is your front yard. Your group is your backyard.
This is an analogy I teach all the time, because it’s simple, and it works. Your Page is your public space ... it’s where people drive by, wave, and get a general idea of who you are. But your Group? That’s the backyard. It’s more relaxed, more personal, and it’s where people take their shoes off and stay for the real conversations. If you're building community in your business, you need a backyard.
7. Groups are a pillar of visibility.
In my 5-Step Hello Visibility Method, Facebook groups are one of the five key ways I help business owners show up and shine online. Because visibility isn’t about being loud, it’s about being real. And nothing is more real than a well-run group.
7. The Wrap-Up
I never set out to become a Facebook group expert. I set out to find a connection at a time in my life when I felt completely disconnected.
But building that spinal cord injury group, navigating the highs, the heartbreak, the weirdness, and the healing, taught me everything I needed to know about real community. And now I use those lessons every day in my business.
You don’t need a huge audience.
You don’t need a complicated strategy.
You just need to care enough to create something that feels safe, useful, and real.
Whether you’re a coach, a creative, a product-based business owner, or a service provider, if you want more than likes or followers, build a community, and a great (free!) place for you to start is a Facebook group. A place where your people can gather, ask questions, get support, and feel part of something.