[RubyV]

The title of the thread is meant to be very sarcastic if it wasn't obvious.

So the other day I was talking with my mom and telling her about how some of my cognitive symptoms are becoming more frequent. Such as: having trouble coming up with words I want to say, or saying the wrong word, like telling my cat he has food in his litter box (meant to say food bowl), or forgetting what I am saying mid sentence, ect.

I told her that it is getting to the point where I don't even realize I have said the wrong word, other people are correcting me. Her response? "Concussions don't last forever. You are getting better and you just need to focus more and pay more attention to what you are saying."

I felt like saying, 'Oh, just pay more attention? Why didn't I think of that before! Of course! My symptoms are just me being lazy. Silly me!'

She didn't say it to be mean. The vibe I got from her was kind of like 'get over it already' even though I know she didn't mean it that way and she doesn't feel that way. She just doesn't understand what its like and she never will unless she goes thru this. I shouldn't expect her to get it, so I shouldn't be hurt when she says something like that.

Anyways, I was wondering how everyone else responds to comments like that from your friends or family members. How does it make you feel, how do you deal with it?

Please feel free to use this thread as a place to vent about the ignorant comments of others.

[nightnurse30]

Its so frustrating when these things happen and people dont quite understand. Maybe ask your mom if she would watch the TBI videos i posted a few days ago to see if it will help her to understand what you are going through and maybe be more sympathetic. The title of the thread is "you look great! A funny and information TBI video" or something to that effect.

Our injury is hard for others to see. We dont have a cast showing we are injured or stitches...so its hard for people to see a "well looking person" and know all the subtle differences in the way our brain is processing information or putting it out there. Nevermind the pain, dizziness, and fatigue that goes along with our PCS. Hopefully she will learn a little more about your condition and be more understanding.

[RubyV]

You are right nightnurse. I keep having to tell myself that too, 'I don't have a cast, I don't look hurt, people don't understand'
Both my parents have medical backgrounds so I did not expect this response, but I guess even parents have their limits.
That is a great idea about showing her the videos, I hadn't thought of that. Thanks so much nightnurse.

Originally Posted by nightnurse30

Its so frustrating when these things happen and people dont quite understand. Maybe ask your mom if she would watch the TBI videos i posted a few days ago to see if it will help her to understand what you are going through and maybe be more sympathetic. The title of the thread is "you look great! A funny and information TBI video" or something to that effect.

Our injury is hard for others to see. We dont have a cast showing we are injured or stitches...so its hard for people to see a "well looking person" and know all the subtle differences in the way our brain is processing information or putting it out there. Nevermind the pain, dizziness, and fatigue that goes along with our PCS. Hopefully she will learn a little more about your condition and be more understanding.

[Mark in Idaho]

Ruby,

To add to nightnurse, print out the TBI Survival Guide at www.tbiguide.com and highlight the parts that pertain to you. Ask her to read them

Then, the next time you get that kind of ignorant response, you can say, "Mom, You still don't understand. You haven't read the TBI Survival Guide or viewed the TBI videos, have you?"

We all go through this. Some of us even go through it with out even a clue that these symptoms and reactions are due to our previous concussions.

My best to you.

[RubyV]

Thank you Mark. This helps a lot. I just was so taken aback that I did not know how to respond. This way I can hopefully educate her a bit and not snap back with a rude response next time she says something like this.

On a semi related topic, does PCS qualify as a mTBI? It is probably a stupid question, but I have tried researching it online but its a bit confusing and I can't find a straight answer. My Dr diagnosed me with a concussion and then PCS, never said anything about a TBI. I just want to be clear. Thanks.

Originally Posted by Mark in Idaho

Ruby,

To add to nightnurse, print out the TBI Survival Guide at www.tbiguide.com and highlight the parts that pertain to you. Ask her to read them

Then, the next time you get that kind of ignorant response, you can say, "Mom, You still don't understand. You haven't read the TBI Survival Guide or viewed the TBI videos, have you?"

We all go through this. Some of us even go through it with out even a clue that these symptoms and reactions are due to our previous concussions.

My best to you.

[greenfrog]

Yes, a concussion is an MTBI (I believe).

It can be frustrating dealing with family - I had some of the same issues (in my case, my parents kept encouraging me to "go outside for a walk" and "get some fresh air," even though at first I couldn't do this without feeling worse). It's exhausting enough riding the PCS rollercoaster; the last thing you feel like doing is expending energy educating others, especially when they could take the initiative to educate themselves.

But it's worth a try. One thing that can be helpful is providing links to short, clear articles and videos on the subject. I provided my family with links to the Sidney Crosby press conference, which seemed to help them understand a bit more.

I would also listen to Mark - he provides good advice on many aspects of coping and recovering from concussions.

[tamisue]

I'm with Mark and Nightnurse. I've sent links to the video and the tbi guide to family members and friends so they could start to understand what I've been dealing with. I've gotten some good feedback from my oldest daughter (she lives out of state)!

[SpaceCadet]

My girlfriend sometimes doesn't understand what I'm going through and says some things similar to that. Sometimes she will laugh at something I do because of my symptoms, like we were at the grocery store and I left the 4 month old son who was in the stroller on one of the aisles and started walking to the next aisle lol, she was like NICHOLAS! THE BABY! And she started cracking up. I'm glad one of us has a fully functioning brain.

How long have you been having symptoms? Maybe it really hasn't settled in with her, or maybe she isn't educated enough on your condition. You should do what nightnurse30 suggested and show her those videos and also have her do a little research on PCS/TBI. Most of the documents online give a rough estimate of how long the symptoms last. I'm pretty sure once she reads about it she'll be more understanding.

My mom has done a lot of research on what I'm going through and she understands completely. She's the one I go to when I need someone to talk to.

I hope everything works out for you.

[RubyV]

I know exactly what you mean!! The other day I was trying on some things at Target and when I was done I walked out of the dressing room WITHOUT PANTS ON!!! Luckily I noticed as soon as I stepped out of the dressing room and no one saw. I just have to laugh at myself when I do things like that or I will go crazy.

I will be 8 weeks post injury on Sunday. I don't think she really understands what a diagnosis of PCS means for the long term (and I am still figuring out myself). I think she just heard the word concussion and though i would be better in a few weeks. I have had headaches everyday almost continuously since. The Gabapentin is helping the intensity, however I have noticed that my cognitive symptoms are getting much worse and more frequent.

I do have a friend who had a bad head injury/PCS 6 years ago and still has issues with dyslexia, short term memory, word finding ect... I am able to go to her and vent and she totally understands and tries to give me tips on how to deal with it.

I also started reading the tbiguide Mark told me about. I looked at it a few weeks ago and was overwhelmed by the amount of writing and wasn't able to read it. It is absolutely amazing, its like the author got inside my brain and was able to perfectly describe almost all of my symptoms! I will print that off for my mom as well and hopefully that helps.

Thanks for the great advice everyone!

Originally Posted by nwsmith1984

My girlfriend sometimes doesn't understand what I'm going through and says some things similar to that. Sometimes she will laugh at something I do because of my symptoms, like we were at the grocery store and I left the 4 month old son who was in the stroller on one of the aisles and started walking to the next aisle lol, she was like NICHOLAS! THE BABY! And she started cracking up. I'm glad one of us has a fully functioning brain.

How long have you been having symptoms? Maybe it really hasn't settled in with her, or maybe she isn't educated enough on your condition. You should do what nightnurse30 suggested and show her those videos and also have her do a little research on PCS/TBI. Most of the documents online give a rough estimate of how long the symptoms last. I'm pretty sure once she reads about it she'll be more understanding.

My mom has done a lot of research on what I'm going through and she understands completely. She's the one I go to when I need someone to talk to.

I hope everything works out for you.

[Kenjhee]

I had a similar expereince with a karate instructor, of all people. My increasing tardiness from class had become an issue, so he took me aside, stabbed a finger in my direction, and ordered me to "Get healthy!" He knew I'd had a long-term battle with Chronic Fatigue Syndrome, but still those words came out.

Well, why didn't I think of that? I'm sick, so just get healthy, problem solved. (I actually resolved the problem another way, by permanently leaving the class).