How to explain your post concussion syndrome to family & friends?

Hi, @nanacate - welcome to Mayo Clinic Connect. I'm glad you became part of this group.

You may find the Help Center https://connect.mayoclinic.org/help-center/ useful, especially the part about How to Use Mayo Clinic Connect. We have many members who are new to online communities when they first join in.

I moved your message to start its own discussion, as I thought it was important and other members would have thoughts to contribute. Tagging a few members who may have some initial thoughts to share about how to effectively explain your post-concussion/TBI symptoms to family and friends, especially amidst grasping for words and trying to explain the extreme fatigue and memory issues.

Please meet @lanulare @kayabbott @lynne123 @jenniferctbisurvivor. @scottrl and @marialara also may have some ideas to contribute.

Would you have tips about what kind of description seems to have "landed" for any family or friends to whom you've explained your symptoms thus far, nanacate?

Hi, @nanacate. Welcome to the community!

One way I begin to describe my situation is to say that no two brain injuries are alike, and no two patients are alike. Yes, there are some commonalities, but they're descriptive, not predictive.

In my case, having had an ischemic stroke, I'm pretty good cognitively, but my right-side motor skills are severely limited. Does this mean I'm "behind" in recovery? Hardly. But a lot of people think because I'm physically handicapped, I must be an idiot. I've shocked more than a few people once I've spoken up.

You may find it helpful to refer people to websites that will broaden their understanding of brain injuries. And I know a man who has severe aphasia after a stroke -- he once got stopped by the police, who were convinced he was intoxicated because he couldn't speak well. His solution? He now carries business cards that explain his aphasia.

I know it may seem strange to carry a handout explaining your condition, but it's a start. It lessens frustration on both sides.

Me, I carry business cards with a link to my YouTube website where I discuss my recovery journey. It can help clarify how someone can look totally disabled but still be pretty damned smart. The YouTube link:
http://www.youtube.com/@srlucado/videos

(I've also been on local TV, featured for many Dad Jokes I've written and told. Who says the disabled have no sense of humor?)

Anyway, find a medium through which you *can* communicate, and start there.

Does that help?

My moderate TBI was 33 years ago, I just finished the outline for my PhD dissertation and went rollerblading; I came to in the ER with left temporal and basal frontal lobe damage. Brain injuries hit everyone differently, and support from friends/family/coworkers is also important. Most coworkers gave me time to recover, a few were bullies (I'm a retired research scientist). There were few books on TBIs years ago; perhaps some of you that are replying can recommend a book that he/she can share with associates. I did finish my PhD and most of my word finding and emotional recovery was completed after 1.5 years, but improvements still dribbled in for 8-10 years.

I felt a bit like starting with dementia and working my way back, fitting together pieces of my jigsaw puzzle. It is a weird feeling, thinking you are complete and then new memories appear. I could not juggle multiple tasks at once, so narrowed to single focus (helps rewiring). As you have likely found, you miss a lot of cues and info in that mode. I could only work half days and then I would brain bonk. Naps are important.

Regarding what to tell friends and families, saying that brain injuries heal and rewire but it is a slow upward process a bit like stairs, mostly upward, resting, and plateaus. Ask for time. Our brains energy gluttons, and when injured are easily tired. It is also emotionally draining because we aren't quite the same person now. Simple tasks from before can feel like running marathons now. I tell people that I have some aphasia, that the word I'm searching for isn't always the one that I say. It is handy to keep a journal to document your recovery steps and experiences. Also good to list those pieces of your self that are still you (we tend to focus on what is missing). TBIs are physically and emotionally hard, and I hope you can find ways to escape the stress of the injuries and recovery experiences. I had one friend that was supportive, and that made all the difference.

Hi, thank you for that warm welcome! So far I do not have any insights or thoughts on how to explain this post-concussion syndrome to others. I sure would love some suggestions! Thank you, Cate

Thank you so much for your response. It is quite helpful. Many of my friends have PhDs and I'm very aware of what it takes to achieve that, and to have this injury during that process must have been a nightmare.

I thought it was particularly helpful about moving back from dementia. Yes, that sounds right on target for me. I guess all of us have wondered is this IT, dementia, or TBI?

For the first time in my life I am giving myself permission to NAP and I think it is essential to rest.

The concept on patience is not in my wheelhouse, so this is something I am having learn much more about day by day.
Be well and many thanks, Cate

Hi, Scott, thank you so much for sharing your story with me. I wil lgo to the website for sure.
Take care, Cate

Hi, Lisa, YES, I would most definitely like any and all tips on what kind of descriptions of TBI have helped others understand my new world.
Many thanks, Cate