Dealing with Others
 

I'm curious on what advice everyone here has about mentally dealing with others.

Lately I find myself incredibly depressed and frustrated that everyone that I meet doesn't seem to even try to understand what I'm going through. I find myself wanting to write-off friends and just stay inside alone.

I feel like my neurologist and immediate family are the only ones that believe me.

If someone doesn't "escape my presence" after I mention my PCS and all; than it seems like their only other option is to minimize it, and make it seem completely normal to them. When I blackout and I forget where I am and what I was doing, it is nothing like someone walking into a room and forgetting what they were going to go get. It's scary.

It's frustrating that everyone treats my problems as if they're a cold: something that everyone else deals with and I'm over-exaggerating. I'm not. I really wish that I was. I wish that it was all so easy and simple to fix.

Everyone makes it all seem like it should be so easy, even though they've never been here. They email me about job openings nearby, and try to throw me into situations that I am clearly not ready for. It doesn't make sense to them.

Has anyone figured out a way to explain it to others that works? Do social settings work for anyone here? Is giving up the only option?

I would go with the mantra that, "they don't understand you if they don't have it." It's a lot to expect others to really know and understand what you and everyone here is going through. With a little education (the threads mentioned here about certain resources you can point them to) might help, but they still don't have it and don't get it.

I find that I only explain it to those who are really important to me, which also means those who I work with closely and have frequent interactions with.

I recently wrote an email to these people at work explaining also some of the temporary provisions I expect from them to help support me. Things like, talking one person at a time at meetings, less involvement in certain projects, why I leave the room, headaches, attention, etc. So far, they've been receptive to these ideas in hopes of course, they are temporary.

It might be time for you to, as you said, "write-off" some of these so-called friends. I know its hard for them to understand, but if they don't TRY to understand and they continue to push you to do things you've told them your not capable of doing...then you have to really question if they are friend or not.

I have 2 friends that know what I'm going through and completely understand. They don't try to push me to do things I can't do. One of them is the person I was with when I got assaulted (he was assaulted too, just not as badly as me) and the other is like a brother to me. I've labeled everyone else as acquaintances.

I think how you present yourself can make a big difference.

I felt like because I didn't understand it and most other people didn't understand it and the actual incident which caused the injury didn't sound particularly serious, I had to be apologetic about my symptoms. I would tend to waffle, give a confusing list of symptoms and say things like "well I hit my head in March and since then things have been all weird". Looking back it's no wonder people didn't know what to make of it.

When I got more informed and familiar with this condition I also got more confident in expressing myself and the seriousness of what has happened, without feeling that I have to justify myself or apologise. I now just say "I have a brain injury". You won't find anyone who doesn't take it seriously if you tell them that.

It's also useful to have a speech prepared which succinctly and accurately describes your major symptoms. Devising a new explanation each time someone asks what your symptoms are is one of the most challenging cognitive tasks I have come across, which meant I didn't express myself well early on.

That said, there are people who have had every opportunity to understand, and don't seem to have made the effort. There are also a few friends, and one in particular, who have really come through for me. I consider this revelation of who really cares about me and who I shouldn't waste my time with to be a major silver lining to this whole experience.

Hardest thing in dealing with people is avoiding arguments, which can happen w/even close friends & family, depending. I'm really careful not to say anything that could bother a person.

People say everyone has to deal with conflict, but I don't even want them to occur. I know from experience, the worse they are, the more physical pain they cause in my head. Which affects sleep, which affects the brain, which creates a vicious circle.

When people tell me they experience the stuff I am going through and I know for a fact they have no idea - like when they say, I forget why I walk into rooms or I forget to bring stuff or whatever it is - they are comparing themselves to themselves and how they believe and know they should function.

We can tell whether what we are experiencing would have been normal behavior for us before our injuries and that's why this stuff is frustrating to us, because it's not normal for us! And it's especially not normal to happen 100 times a day, or 100 times every few hours, which is what does happen to us!

I tend to think that people tell us these things in an effort to make us feel better, they want us to feel like a part of the group so we don't feel like we are so abnormal.

Yes, it makes us feel like they are dismissing our experience, emotions and frustration about these things, but they have NO idea that they're are doing that when they say things like that.

I used to be very hyperactive and this injury has made me very tired most of the time. Someone at work the other day suggested I drink some coffee to help me function in a more energetic way. Well, instead of explaining to them how bad caffeine can be for people recovering from brain injuries, or how caffeine won't even touch the fatigue I'm dealing with, I just thanked them because I know they feel helpless and really want to help me and by making a little suggestion like that they feel like they contributed in a helpful way.

I think there are very few people who can understand in any way what it is to be dealing with something like this.

I've found that only my friends with MS can relate to it at all.

I think people who've had to deal with major health issues, like cancer, can relate to some aspects of what we are dealing with.

But the majority of people just don't get it. And I don't think there is any way they can really get it without experiencing it themselves. There is a reason tbi is called an invisible injury, because people just don't see it.

I'm sorry to hear your friends are throwing you into situations you're clearly not ready for.

One of the tactics I use to avoid doing things I know will be bad for me and decrease my speech and cognitive functioning is the just blame it on my Dr. "My Dr. doesn't want me to be doing that... it's bad for me right now. Hopefully some time in the future" Or "My Dr. says if I do that it will take me longer to get better." etc. That way I don't even have to go into why I can't or anything else about it if I don't have the energy to really explain it.

I used to work a lot of overtime and now I am only at work part time, but some people I work with ask me to stay a little later, or change my schedule to fit their needs, and I admit I have tried it and it messes me up big time! I told my Dr. and she wrote a note that says, schedule may not be altered in any way. So, I can just blame her... ;)

My boyfriend always tells me when we have miscommunications that it's not my fault. He says the fault lies on the guy who caused the car accident I was in. We try to blame all the arguments we have on him too. ;)

When I was early in on in my injury, the neurologist I saw, who didn't ask me a thing about what happened and what I'd been experiencing (and I wasn't well enough to realize I need to stand up for myself) said "you don't have a concussion, you PTSD, take these pills).

I became very defensive with everyone around me and made it my mission to convince the world. My dad and sister pointed out to me that I don't have to waste my energy on that. Just do what I have to do and concentrate on getting better.

You need to concentrate on getting better. Using your energy to convince people is a waste of healing energy. So, keep close to those who are supportive and take a break from those who aren't. Eventually those who realize that you're doing what you need to do will stop giving you their two cents and just be supportive. Those who don't, well, you don't need them right now. Maybe later.

Good luck.

Some people say that you "have to walk a day in someone else's shoes" in order to understand what they deal with. This is especially true for people wth tbis and pcs. Sometimes it seems like it'd be easier if I had a cast on a broken arm, just so people don't look confused when you say you are still healing but hey can't see your brain damage. Honestly, I find this website extremely helpful when you feel like you are losing it or no one understands you. This website is full of people who understand! Have you ever checkedout te tbi guide? Its online if you google it and it can be helpful to get friendsand family to read it. Also the web series "you look great" on youtube can help open some eyes. Hope tha helps a bit!

I know exactly what you mean! Even a couple of my family refuse to accept that PCS Is more than a headache. My brother has relentlessly teased me for my 'pathetic behaviour' and 'constantly being ill' and while he doesn't mean any harm, he just doesn't understand, when I told him it's almost similar to a hangover but so much worse and is never ending. He was still confused by it. My grandmother as been by first the worst, constantly asking if I've drunk enough water or telling everyone that I get headaches because I don't eat enough. It's infuriating!
As for my friends, most of them accept I got a concussion, all of them were there when I got it, but when I struggle to get up and find it painful to move they laugh and ask if I'm suffering lazyitis!
No one seems to understand, no matter how many times I try to explain... Nothing... I completely understand how you feel. I think some people are naturally more understanding than others, and other people are concerned and try to deal with in their own way. In the case of my grandmother, trying to find a quick fix cure or not knowing what a syndrome is.

Show these ignorant family and such the YouTube series called "You Look Great" by John Byler.

You can also do a search for the stories about Pro Football and Hockey players who have PCS.

That youtube series is indeed awesome and made me feel a lot better as he describes everything so well. The only problem I had with using it in the way you suggest was that he was in what sounds like a pretty nasty car crash, whereas my main problem was convincing people that I could be struggling so much as the result 'only' having had a soccer injury.

Similarly I could find loads of articles about PCS from American football, Ice Hockey and Australian Rules Football, but again people would accept that these more obviously 'violent' sports will produce pretty nasty concussions but not that me playing amateur soccer would do so.

And when I started trying to explain that I thought previous concussions had contributed to my PCS people seemed to just become completely thick and couldn't grasp the concept at all. More than one person 'forgot' that I had told them about my most recent concussion and thought that I was trying to tell them I had suddenly and randomly suffered a relapse from a concussion 22 years ago.

There was a video someone posted a link to a while back about a multiple concussion baseball player whose concussions sounded fairly tame but still produced big effects - that was more suitable to my purposes, though once people have decided you're being a hypochondiac I find they won't bother watching or reading stuff you send them anyway, I guess they think it will just encourage you :rolleyes: .

I'd definitely agree though that nothing beats the 'you look great' series for really giving people an insight into PCS. And more people have been understanding towards me than this post would suggest, I'm just ranting a bit!

Klaus,
I find even those closest to me who genuinely try to understand have a hard time relating to the bizarre symptoms. It took me a long time to realize that what I experience in my thought processes don’t necessarily translate to the outside world. I think that is the beginning of wisdom.

For example, I have a stutter now that I never used to have. A friend suggested that I slow down and practice in my head what I am going to say. I told him that everything sounds fine in my head but it won’t come out, like a problem with coordination. He said “really? Because it looks completely different to anyone who is talking to you.” He was being sincere.

I find the video Mark in Idaho uses to be most useful in the aspect of giving me some vocabulary to use in explaining to others what I am struggling with. The part about the smaller clipboard as memory for example I have used to explain why I can’t be trusted to remind someone of something even given the best intentions.

Those closest to me have read the journal I keep on symptoms as they come up. (I maintain it for the doctors I go to.) Although the people around me don’t understand completely (who does?) I don’t worry about convincing anyone.

For those I meet, I tend to say that I am recovering from a concussion as opposed to using more clinical terminology. The most important thing is not convincing everyone, but building the support system you need. In the mean time, others may change their opinions, but that can’t be your responsibility. Anyway, some food for thought.

Best of luck
Gillian

Klaus, John Byler was just rear-ended and got out of his car to observe the other events of the multi-car collision. His did not have any other injuries.

You injury from soccer is not to be diminished. I had a similar event that wiped out my academics and college scholarship prospects in my 10 grade year. There never was a specific head trauma identified, just an accumulation of likely sub-concussive impacts.

Get some information on sub-concussive impacts so you can better explain your injury.

I explain symptoms rather than my injury. I describe my lack of immediate and short term visual memory by showing how I can look away from someone and only be able to describe some vague parts of their image, like, they have a mustache or long hair, but not much more. I also use a traffic explanation: I stop at a stop sign with uncontrolled traffic crossing. I look to the left and see the traffic. I look to the right and see the traffic. BUT, I have already forgotten what the traffic from the left was like.

For those with interest in medical terms, my IQ is in the top 5 to 2% of the population but my immediate and short term visual and auditory memory is at the bottom 5 to 12 % of the population. If it wasn't for my IQ, I would be very severely mentally disabled.

When a symptom is described in every day function terms, people tend to go, Wow.

Klaus, like you, my MTBI is from soccer. I feel much the same as you. I have to say though, Im glad you posted this! There is comfort in finding someone injured the same way.

I went to my first ever Brain injury support group today. In this group, everyone elase had "survived" serious BI, and when asked how I was injured, I felt ashamed! :(. Later when asked what my symptoms are, I couldn't find the words and only got out, "I can't focus". :confused: it's much more than that of course. But I left and have been feeling bad about it since. I mean, my gosh, she must have thought I was fine and just a whiner.

I have read only a couple of posts tonight because I linked over to YouTube to watch the videos mentioned here.

All the comments, sharing and advice here has really made me feel better. Thanks everyone for your posts. :)

:grouphug:

Soccergal,

Don't feel bad about your time at the support group meeting. Go again next time. You may not have suffered the serious injury most have but your brain is still not working normally. Take a note to read about your symptoms. Trying to speak when 'on the spot' like that can be very difficult for someone with PCS.

List you struggles. Like:

Trouble finding words.
Get frozen in mid-sentence.
Poor memory
Difficulty following multiple step instructions.
Get stuck 'staring'
Personality changes
Insomnia
Brain fog.

You can make this list up over the next few weeks.

Read through the TBI Survival Guide to help you remember your struggles. Highlight the ones that sound like you.

And, try to remember that you always have us for support.

My best to you.

The same thing happens to me when I go see my neurologist or psychiatrist. I have a hard time explaining how I feel...and my symptoms vary throughout the day and my memory is so screwed up, it's hard to keep track of them. I wish I could just invent a word that everyone will completely understand what I mean when I say it...hahaha.

Yeah like Mark said the best thing to do his have a pre-prepared list of your symptoms described as best you can beforehand, probably even written down. You could even explain to them what you've just told us about how you felt, how you couldn't focus enough to explain your problems properly and you were worried they would think you were just whinging. They should understand.

I still find listing my symptoms to be one of the most challenging questions anyone can ask me. I don't think I've ever actually answered that question without having to put my hand to my forehead and shut my eyes while I answer in a sort of 'thinking posture'! You'd think I would have had enough practice by now!

Soccergal you may also be interested in a couple of stories I was aware of this season in England, with Manchester United's Javier Hernandez and Chelsea's Didier Drogba out for a few months and weeks respectively with PCS that they gained playing soccer (links below). Hernandez was 'only' hit on the head by a ball during a training session.

http://www.espn.co.uk/football/sport/story/103428.html

http://news.bbc.co.uk/sport1/hi/football/14695251.stm

oh and thanks for the group hug!

Hi Gillian, The same thing happens to me, sort of, when it comes to my speech. It gets worse when I'm even just a little tired. I used to speak very fast and I was very articulate and had a great rhythm to my speech, but now when I speak, I can have the sentence all lined up ready to go in my head and know exactly what I want to say and what comes out is like a grab bag effect - I could stutter, I could say the wrong words even though the right one is in my head, the grammar could come out wrong even though it's correct in my head, I could say it in a different tone of voice than I intended (I've even yelled loudly when I was just trying to speak!) Also, I mostly just have a lot of trouble speaking - similar to John Byler in his video "You Look Great". I didn't learn anything watching it and I may send it to other people (although the people around me are genuinely patient and accepting of whatever I'm doing or saying so I haven't had a reason to send it to anyone yet), but watching it definitely made me feel less alone because he has very clipped and halting speech in that video, just like I do right now! I used to be a very good speaker and now I have huge pauses between words, and I even know what I am trying to say - it just takes forever to come out of my mouth - it's bizarre!