Suggestions for talking to ignorant people about PCS
 

I have been very gradually improving in recent months (adding up to significant overall gains in my health) and am starting to have more contact with others (friends, co-workers, etc). However, some of them have already made rather ignorant comments, such as:

- "I am surprised to hear your concussion is still around..."

- "This has really lasted a long time for a concussion!"

Others have kept a steely silence that sometimes seems to convey a measure of skepticism about my injury.

My question is, does anyone have any suggestions for dealing with such people (including any effective verbal responses to stop PCS ignorance in its tracks)? One response I've used is, "yes, my doctor says that the length of my recovery is not uncommon" (which he actually did say to me).

greenfrog, I know EXACTLY what you mean. I am experiencing the same thing as this is almost month 7 now, (I even find MYSELF asking me that question, lol) anyway, I did some searching and found a website that I loved that SpaceCadet Originally posted:

"Lost & Found: What brain injury survivors want you to know."
Here's a great article for you to show your friends and family.


http://m.brainline.org/#content/content.php?id=5498



Im sorry I don't know how to copy the link itself, but that is the web address.

Hope this helps somewhat!:hug:

I've been going through that myself. Both at home and at work. I usually just tell them, that this is something that could have an effect for years...

Not to be morbid but those with the most arrogant attitude about your continued struggles could be told, "Concussions can be a invisible injury that lasts for years. Did you know that concussions have caused 7 NFL and NHL players to commit suicide in the past 2 years? Some of the football players were never even diagnosed with a concussion because their concussions were so mild."

Or "15% of concussions cause symptoms lasting more than 6 months and even years. Scientific research shows that nobody ever fully recovers from a concussion. They may recover from all of the obvious symptoms but often become good at hiding the less obvious symptoms. I even know people who are on permanent full disability from a concussion."

Just keep in mind, some people never listen or learn.

Yeah, I think you just need to be direct with them and tell them that it's a myth that concussions heal up in a few weeks. You can say that it's just not well-known that it can take months or years to recover from a concussion.

Another thing I would suggest is to use the term 'Traumatic Brain Injury' rather than 'concussion'. I think when people hear 'concussion' they think of something mild and not-so-serious; when they hear 'traumatic brain injury', they think of something much more serious. Even if you just call it a 'brain injury', that conveys the same idea. I think once I switched terminology and calling it a brain injury, people started to get it.

Of course, some people just won't get it, and there's nothing we can do about it. They're ignorant, unsympathetic, and self-absorbed, and they're going to stay that way. The best we can do is to try to not let those kinds of people bother us.

I agree with xanadu. I have not called my condition a concussion in ages. I say I have a brain injury. When people ask what happened or how I got hurt, I tell them it was too many concussions.

My comment will usually pertain to an event, task or environment. I might say, "I have a brain injury and don't process sounds properly" or "I have a brain injury and have very little short term memory."

Something that helps is to explain an extreme example of a symptom like, "I used to have a photographic memory but now I can not even visualize an image in my mind. I can look at you, turn away and only remember that you have a blue scarf on. I can't picture your face or anything else. "

Our daily struggles that they take for granted usually make an impression.

Like you suggested Xanadu00, I started to say brain injury instead of concussion and that does seem to mostly help. Though, there have been a few people that roll their eyes and comment on how I'm exaggerating, sometimes accompanied with a comment that I must really love the attention or something.

Those people I've taken to flipping off and telling them where to go in no uncertain terms... I figure anyone with an attitude like that is not someone I want to talk or associate with anyhow.

Actually, once or twice, people have come back to me after I flipped them off and told them where to go and apologized. That behaviour is not really typical of who I was pre TBI, so sometimes that's a change they notice and can relate to and maybe start to get it.

Mostly I just avoid talking to anyone about it... I do my best to stay true to my long time hermit ways :)
Starr

This was a great question. I have experienced some of the same types of "expressions" from friends/co-workers that have called.

It is frustrating enough to be dealing wwith all of the headaches, fatigue, cognitive issues etc, but having to "explain" why our recovery is taking so adds insult to injury (literally).

I would definitely agree the brainline article helps!!!

There isn't EVERYTHING there could be but it's a start!! Also, you could try referencing fatigue to the amount of energy a bad flu gives you, or explaining headaches in the way that they get that concussion headaches are different than regular headaches!!

Also, one suggestion, yes it stinks having ignorant people, but the people who matter the most should understand if you just explain to them!! ❤