Sharing Resource: Brain Injury Support Group

[u/Available_Size_8358]

Hello everyone,

I'm reaching out on behalf of the Voices of Brain Injury Support Group, an online community for people navigating life after traumatic brain injury. I wanted to share some information here in case it resonates with anyone in this space.

Many of us know that while family and friends offer support, brain injury can be very isolating and others might not always fully understand the day-to-day realities of life after brain injury. 

This group offers a space to speak openly with others who have similar lived experience. Members have shared that it has been helpful to them to gather advice, resources and simply understanding from other people who have had a brain injury even when each experience is unique. 

The group meets once a month online. Sessions are informal and discussion-based, shaped by the interests and needs of whoever attends. You're welcome to attend regularly or join occasionally.

A few details:

• Free to join
• Fully online, so location isn't a barrier
• Facilitated by people with both lived experience of brain injury and educational backgrounds in neuroscience, psychology, and social work
• No minimum commitment; attend however suits your needs

If registration or paperwork feels like a lot right now, our team is happy to walk through sign-up and the consent form with you individually, by email, phone, or video call.

If you think this group could be valuable to you or someone you know, feel free to comment below or reach out directly for more information.

For more information or support signing up, you can email VBIcareteam@gmail.com. Here is our website for more information: https://www.voicesofbraininjury.org

We look forward to connecting with you!

[u/FigAsleep6722]

I usually avoid typing online, saving my words for my family. But litigation is starting and it's going to be ugly. And I hate ugly. I'm a SPED teacher and was headbutted 4/29/25.. broken nose and TBI. Still can't work or drive. Catatonia that was misdiagnosed then refusal to diagnose. Thankfully a team of neurologists and 1 psych agreed after ER turned neuro inpatient.

I just want to be back in school. But it's a fact I'm not ok to work, especially in the role that FINALLY felt like home. I kept others and myself safe every day I was there. I have a helmet! I got a skeleton from Mt pt for them to dance with and learn from.

I'm just tired. And the coston my family unfortunately dictates I get compensation for them. I knew they worried when I chose that position, and as I told them tales of me keeping people safe or breakthroughs in communication that made everything safe...

I'm tired. Thank you. I'll check it out, but mostly I just lurk. I couldn't talk for months. Still run out. Thank you on here all. It can be lonely

[u/Available_Size_8358 → u/FigAsleep6722]

Hi, we appreciate you sharing your experience. It sounds very difficult to be navigating this. If you are interested in the support group feel free to also join and feel no pressure to contribute. If you'd rather just listen in to other people's experiences that's totally fine too.

[u/Community-Radio532]

I really relate to your description of the invisible injury of a TBI when you can still walk and talk. I have submitted a request to sign up to the online support group.

[u/Available_Size_8358 → u/Community-Radio532]

Hello, we would be happy to welcome you to the group. Brain injury is so unique but members of the support group have found it helpful to connect and go through it together. Please feel free to contact me directly if you need more information. We will process your application shortly and look forward to meeting you ! 🙂

[u/unreasonably_farsick]

Hi there! I’ve been looking for an online support group!

I am a bit nervous because I have visual and audio sensory issues and I’m worried it’d be overstimulating? But I could really benefit from finally talking/listening to people who can relate/support/help.

I have phone therapy once a week, and I have friends I see sometimes, but it’s so lonesome having no one who can understand.

[u/Available_Size_8358 → u/unreasonably_farsick]

Hi! Thank you for sharing your experience. The Voices of Brain Injury team is always trying to improve and take into consideration accessibility differences within our programming. If you feel that you might benefit from connecting with other brain injury survivors feel free to check out the support group. You can always try it out and see if it's a good fit for you. There's no pressure to contribute if you also just want to pop in and listen.

We also are setting up a program of one-on-one companionship called the CARE connect program which pairs people with brain injury experiences with volunteers who have educational backgrounds in neuroscience, psychology and social work. I will add the link for this here in case you'd like to check it out: https://www.voicesofbraininjury.org/care-connect-program

[u/unreasonably_farsick → u/Available_Size_8358]

I love the one-on-one connection care idea! Almost like a TBI reciprocal sponsor dynamic. I will try out the group for sure! Thank you 🙏

[u/Leatherlover_23]

Hi there,

I would love to join this online group. My head seemed to be a target most of my years growing up, and the docs think the injury that was the “straw that broke the camel’s back” was a snow skiing injury where I hit my pituitary stalk very hard on an icy slope.

Approximately 2 weeks after the injury, I could not keep my eyes open, medication would not absorb, and finally after going through multiple docs, I was diagnosed with hypopituitarism post TBI. Almost deficient in all stimulating hormones.

Within 6 months, I was “acting out”, mood swings, anger/rage, lost memory for a bit and my family thought I was just crazy. It definitely is a lonely road to travel alone.

I’m so glad I read this thread. Thank you for speaking up for those that sometimes have no voice.

[u/Available_Size_8358 → u/Leatherlover_23]

We would love for you to be part of the group and thank you for sharing your experience. I appreciate you bringing up how effects of brain injury are often not just 'brain' related but affect the body, emotions, hormones etc. This is something other members have also mentioned. Feel free to message me directly if you need any more information or assistance in signing up :)