You are not alone.
There are many ways to build and shape your community as you learn to advocate for yourself after a spinal cord injury. One of the best ways to do this is by connecting to the greater spinal cord injury community of fellow advocates, and you don’t have to live geographically near a big city, or any city for that matter, to make this happen. There are dozens of options for connecting with others with paralysis. See the options available below.
Online Community and Support Groups
Not many people realize how their community affects their happiness on a daily basis. You deserve to have people in your world who you can connect with on a ‘real’ level, but this is not always easy with a spinal cord injury, especially if you live in a remote location or have a difficult time going out due to health issues or transportation.
But you don’t have to be alone. Keep reading to learn the best practices for interacting with and finding some of the best online spinal cord injury communities and support groups to help you create your ideal community.
Best Practices for Participation
- Immediately get relevant answers to your questions by searching discussion archives for topic key words.
- Find potential local support by searching for your state or nearest large cities.
- Identify members who can closely relate to your experience by searching for your level of injury (ex: C4 Complete, or T9 Incomplete…)
- Make a first post on the forum introducing yourself, your level of injury, tour state, and any immediate questions you have.
- Be active in responding to others’ posts and sharing your insights – this can be a great place to build friendships.
- Always think critically about your own strategy and take suggestions from others lightly, as everyone’s experience is different, as is their body.
- Don’t share contact details publicly or to strangers – not all online groups can vet their members or confirm who they say they are.
- Don’t take peer advice as medical advice. Always consult with your doctor or another medical professional before implementing health-related suggestions from peers.
Recommended Online Community and Support Groups
The following online communities offer reliable support nationwide in the USA, listed alphabetically.
One of the oldest online spinal cord injury communities is the online forums found at Carecure.net, created by Dr. Wise Young, a prominent spinal cord injury research doctor at Rutgers University. You can ask questions directly to a spinal cord injury nurse, as well as thousands of helpful people with paralysis in forums like New Spinal Cord Injury, Relationships and Sexuality, Caregiving, Equipment and Supplies and Exercise. They also have a separate section on cure-related questions.
Christopher and Dana Reeve Foundation
This well-known foundation has online support groups through their HeyPeers program. You can find support groups for people living with paralysis and support groups for caregivers. All their support groups meet on Monday or Wednesday evening at either 6pm or 7pm EST.
United Spinal Association – Peer Mentoring
The United Spinal Association is the oldest spinal cord injury non-profit in the US, founded by paralyzed WWII veterans. They offer virtual one-on-one peer mentoring to people with spinal cord injuries if you do not live near anyone with a spinal cord injury. Their long-distance mentors can be just as helpful as someone in person and can be a great resource. You can request a mentor directly on their site.
United Spinal Association – Zoom Support Groups
United Spinal Association offers several virtual support and resource groups, some of which are run by local chapters, which meet at various times throughout the week over Zoom, and they have a weekly social hour that meets every Thursday at 1:00 PM eastern. And for those who are interested in advocacy, they offer “Advocacy Live,” an online virtual group, as well as an online group for parents, LGBTQ+, gun violence survivors, spanish speakers, and more.
Kelly Brush Foundation – Active Network
The Kelly Brush Foundation offers an online resource for the spinal cord injury community called the Active Project. It’s a place for people with spinal cord injuries to share knowledge, build community and to create opportunities around their love of being active. Here you can find information about adaptive sports, adaptive sports programs near you and you can connect with spinal cord injury peers. They will soon be adding forums and equipment classified sections.
For those in the US and beyond, More Than Walking is a great resource for finding a peer mentor who is similar to you, your injury level, and lifestyle. They offer video chats with your mentor, so no matter where you are in the world, you can find a great spinal cord injury community through this site. They also offer videos showing independent skill demonstrations and video interviews of peer mentors.
A long time nonprofit dedicated to helping people with spinal cord injuries transitioning home, SPINALpedia offers an online spinal cord injury community and peer mentoring services. You can create your own profile on their website and share videos showing your new life. Register today!
The Trauma Survivors Network is a community of patients and survivors who want to connect with one another and rebuild their lives after a serious injury. Here you can find virtual support by registering an account, and the site will contact you directly. They also offer a virtual support group for trauma survivors for those who’ve suffered a physical injury that meets twice monthly.
Mount Sinai Spinal Cord Injury
The Spinal Cord Injury Research Center at Mount Sinai offers virtual spinal cord injury classes as part of their outreach efforts. Their spinal cord injury classes meet weekly and are designed to keep you in shape, like teaching adaptive boxing or meditation, and other topics like transitioning home, women’s issues, and family support.
Quadstick E-Sports – “QS Gamers” on Discord
One of the most influential adaptive tools to help people with quadriplegia play video games (with their mouth) is the Quadstick, and there is an online community for those who use this technology to play video games on Discord.
You don’t have to live in Boston to take part in the virtual support groups offered by SCI Boston, aka the Greater Boston Chapter of United Spinal Association. They offer support groups on topics such as women, newly injured, friends and family, sexuality, nutrition, and significant others.
This nonprofit based in Vancouver, British Columbia has an online support group called, “Reach Out! Virtual Peer Support.” Spinal Cord Injury BC also keeps their groups small, with only 6 to 8 participants, to foster meaningful connections. They offer a variety of support groups ranging from “Parents of People with Spinal Cord Injuries” to “Online Game Night.”
Based in Southern California, the Triumph Foundation offers online support groups for people with spinal cord injuries. Their “SCI Life Series Group” meets weekly and monthly at different hospitals throughout California, but a virtual option is always offered. They also offer adaptive sport and rec opportunities all year long.
Facebook Group: SPINAL CORD PEER SUPPORT WORLDWIDE
Facebook has become the go-to site for many spinal cord injury communities and one of the best groups for people with spinal cord injuries on Facebook is SPINAL CORD PEER SUPPORT WORLDWIDE. With 15,598 members and counting, this is one of the largest spinal cord injuries support groups on Facebook and one of the most active.
Facebook Group: Spinal Cord Injury USA Group
With 12,720 members, the Spinal Cord Injury USA Group is another active spinal cord injury community on Facebook that can help answer any questions related to life with a spinal cord injury. Both this Facebook group and the one above is some of the best SCI communities found anywhere online.
We hope you find this information helpful in your journey. Please check out more informative articles on the SCI Community Resources area in our Resource Center.
Disclaimer: We strive to provide the most relevant resources. You should always check with your healthcare team before changing or adding anything to your recovery. Our resources should never replace recommendations by your doctor.
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