We’re lucky we’re living this life in the age of the internet. Most of our helpful resources and advice have come from articles and information that we’ve found online, that I doubt I would have discovered without internet. Support groups for traumatic brain injuries and post concussion syndrome are flourishing on Facebook.
These groups can be very useful but come with a unique set of challenges. Here are some things to keep in mind while searching for advice online:
- As we all know some TBI survivors have issues with memory, self regulation, or depression (among other things). This means some posts will be made again and again, some may be sad, some may be inappropriate. Have patience with those sharing their thoughts and feelings and try to remember where they are coming from. This is even more important if you are a caregiver speaking to those with TBI, we will NEVER really understand how they feel or the struggles they face and it is essential we do not come across as preachy or instructive. Be grateful for the stories they share with you and try to learn from everyone.
- This is still the internet. Do not accept diagnosis’ from anyone, nor change medications or treatment plans without speaking to your team of medical professionals. Use the information shared in these groups to come up with questions for your doctor, or lead you to research new treatments or literature.
- There are people that join these groups to try to take advantage of those with disabilities. Please do not ever give you personal or financial information out to anyone from these groups and don’t arrange to meet anyone in private.
- Monitor your own posts. If you’ve had good success with a treatment or vitamin, feel free to share but do not offer false promises or prescriptions. For example you can say “Taking X supplement has reduced my headaches from a 9/10 pain, to 2/10. Here is a link to look into it”. Please don’t say “Taking X supplement has fixed my brain injury. It’s the only thing you need, start taking it now” .
With these ideas in mind Facebook, and other blogs and social media can offer support during this hard journey. Some great groups I’ve learned from on Facebook include TBI Tribe, Spouse of TBI Support, and Closed Head Injury Support Group.