Our private Facebook group, You Are Not Alone Dealing With Spinal Cord Injury, continues to be one of the most active and supportive online spaces for people living with spinal cord injuries and their families. Now approaching its tenth year, the group has grown to nearly 6,000 members and continues to thrive.
Over half of our members are active on any given day, which is an outstanding level of engagement by Facebook standards. That kind of daily participation means members are not just reading posts but sharing their own experiences, offering advice, and encouraging one another, showing how meaningful this community has become to the people who rely on it.
Within the group, members talk openly about every part of life after a spinal cord injury; adaptive equipment, pain management, bladder and bowel care, caregiving, home accessibility, mental health, and family adjustment. It is a safe, private place to ask hard questions and get real answers from people who understand.
One of the most active recent discussions in the group posed an important question:
“What’s one thing about managing bowel and bladder with SCI that you wish others understood better?”
The post reached 1,400 people. Here are a few excerpts that capture the honesty and range of experiences shared (names have been kept private):
- “I said forget it and got a colostomy. Best move ever.”
- “Inner peace makes things easier for bowel routine.”
- “It takes more time, sometimes a lot more time, to use the bathroom than for people without an SCI.”
- “The horror of accidents—especially in public or at work—is something people don’t talk about enough.”
- “If you see someone using the ‘accessible only’ stall, please don’t take it. We need it.”
- “Having a colostomy and a suprapubic catheter was the best decision I’ve made in 40 years as a para.”
- “Sometimes you just have to figure out what works because even the hospitals don’t always explain it clearly.”
Members feel safe to ask direct questions, share practical solutions, and talk about issues that are rarely discussed publicly, but affect daily life in major ways.
After nearly a decade, You Are Not Alone Dealing With Spinal Cord Injury remains a solid community built on trust, shared experience and compassion. If you know someone who could benefit, tell them about this space. It can make a difference.
Visit: facebook.com/groups/FacingDisability
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