Hurtful words.
 

Just thought I'd share some of the nice things people have said to me the past couple days.

Last night, my mom sends me a text that says "Well honestly it seems to have gotten worse instead of better and I don't think unless God heals you your gonna get better."....That's just awesome. You know, I do believe in God and when I broke down at the end of last month and begged him to heal me, I spontaneously started to heal/feel better...he gave me 5 good days....but still, that's not right of her to say that.

Today, while on the phone with an old friend...He says "Your not better yet? Damn, your screwed up for life."...I don't think he meant anything by it, probably just joking around...but things like that really get to me.

Such wonderful people I have in my life right now.

Sometimes people just don't know what to say anymore. I don't know them, but perhaps they just used the wrong choice of words. Remember, they're as frustrated with this as you are. Don't shout God out-he's a "friend" and he'll listen.

Yes I get words all the time. Well you look good. Gee thanks. I feel like crap. Or if im having a really bad day my mom will say well you never listened to me as a kid. You need to rest. Well ive been resting for seven months. When you coming back to work. Your able to walk. Yes I can walk. I cant focus, flourescent lights kill me and multitasking and stress uh no. I melt under pressure. No one understands N after awhile they stop trying.

Yep, no one understands us but US. Unless they go through it themselves, they will never understand. Sometimes I wish I looked like crap so people would know how I feel.

I'm at 7 months too. You said it perfectly...can't focus, multi-tasking and stress??? Uhhh, no. I know how you feel about the lights too. I've got my computer screen and smart phone on the lowest setting for brightness. On-coming traffic at night? Even the green traffic signal? No thank you. Sunglasses at night? You betcha.

Nick,

First, you need to put your mother's comment in context. Since she is not home much, she only sees your symptoms when she is. Your talk with her and the others may have made her think you has gone downhill just because now she knows more of your complaints.

You should ask her what she observes in you that makes her think that.

Do you text with her during the day?

To all,

These comments from others are based on they total lack of understanding your condition. How do you expect them to understand your condition?

The only way they will is if you can find a way to explain it that they will understand. Everybody needs to find the explanation that works for their condition.

When I comment about my limits with driving, I have a simple explanation. I say, "I have very poor visual memory. If I am stopped at a stop sign and the crossing traffic does no to have to stop, first, i will look to the left to see where the oncoming cars are. Then, I will look to the right to see where those oncoming cars are. But, by then, I have already forgotten what I saw coming from the left. "

I have other such explanations but that is the one I use the most.

I also explain my inability to follow multi-step instructions from memory.

And how, I can be completely focused and functioning then have a sudden sound completely wipe my memory clear, as if my memory was a chalk board and the sound was an eraser.

We can find explanations that other will understand.

If any of you have symptoms you need help explaining, post them and I'll try to help you come up with an explanation.

Remember, we are the invisible wounded. If we were using crutches or a wheel chair, others would understand.

My best to you.

Well, I think she gets the idea that I'm getting worse because...well, I actually did. Let me refresh you on a couple things...I was actually fully functional about a month and a week out from my injury. I started working, hanging out, running errands...you know, regular life. Then in September, PCS showed up at my front door with in a vengeance. That would be one reason she would think I'm getting worse.

In October when I moved back in with her, I was able to watch TV, play video games, stay on the computer all day...then as of November, I can't do any of that without serious problems. I was also able to go to stores without becoming overwhelmed and confused...not anymore.

Yesterday I explained to her that PCS sometimes don't show up for months, that's why I appeared to get worse. I have no explanation of why I can't seem to watch TV or play video games anymore.

Your right, she's not home enough to see what's going on with me. She knows of my struggles though...when I start not feeling right I text her about it, or tell her when she gets home. She knows how many times I've been to the ER, she's taken me half the times. I think I've been to the ER more in the last 4 months than I did the first 3 months of recovery.

Yesterday I broke it down for her some of the things that bother me, such as the chaos in the house, arguments and stress, bright lights, TV, dogs barking, long conversations, etc. This is the first time I've told her these things bother me...that could be another reason she thought I was getting worse because she didn't know about those things to begin with.

I have not told her of my most recent improvements yet.

Your right about the explanations thing. I've found ways to explain some of my symptoms...and some of them are self-explanatory (such as stuttering, word finding, etc.)...but I have some very complex things happen to me that I can't even explain to myself. So for those things I just say "i'm having problems right now". Or if I figure out what it is that causes me to feel like that I just say "If I do that it will cause me problems.".

I said in another thread I wished I looked like crap so people would know how I felt. Maybe I should draw #'s on my face (like they do in cartoons) and wrap a bandage around my head.

Lol

When I was complaining about the weight I have put on during the months of enforced inactivity and comfort eating my wife said "you look like it's Christmas and you've eaten the whole goose". :eek:

It was so outrageous it was funny. She can't believe she said it, and doesn't know where it came from :D . If I ever say anything wrong ever again, that comment is my get out of jail free card :cool:

Yeah, Nick, that's hilarious!

And Klaus, I gained a LOT of weight too. I used to be a size 6/8 (depending on the brand) and now I have a closet full of cute clothing that I can't even try on!! (At the worst point, I had lost all muscle mass and still weighed more than 50 lbs more than I did at the time of the accident.)

And I'm one of those chicks that is really into clothing and fashion - this has been a difficult thing for me to let go of. Not only can I not fit into the cute clothing I already own, but because I've been out of work for so long I can't afford new cute clothing in the appropriate size anymore. So I feel bad about how my body looks and I feel bad about how my clothing looks.

This mTBI has been an interesting trip down the road of what my self esteem consists of. I felt bad about myself for not working or being productive, I've felt bad about how much help I needed, I have felt bad about the way I look, I have felt bad about the speech impediments I've had to deal with and I have felt bad for not being "as smart" or as quick as I was before the accident too.

But my boyfriend is AWESOME, because even when I was at the heaviest I've ever been in my entire life about a year ago, he said that I still looked good. :o

I'm losing weight, though, just as slowly and surely as I'm still getting better. This has just been such a looooong process!!

I think there are plenty of 'chicks' who would still look fabulous after adding substantial weight to a size 6/8 body. Stick skinny is for models. Healthy women have something to grab hold of.

I was a fit 160 when I was injured. I ballooned to almost 190. I got back to 169 last summer but am back at 180 for the winter.

Meds are part of this weight issue. SSRI's make weight management difficult.

Hi nwsmith
 

Some people just do not know what to say. Those are the ones that probably should be quiet. I am 60 female, and have no hair. I don't wear a wig, but a dew rag, cotton comfortable, and biker looking. People have asked me why I want to look like that. Did they think I didn't want hair? Have they ever tried wearing a wig in 95 degree weather? I sure have heard this kind of hurtful stuff too. God does not bring these illnesses upon us. I have also been told I must have sinned alot to have my problems, like I am being punished. I am sorry you have had to hear things that hurt too. Just remember we here at NT will always be kind and caring to you, and will try never to hurt your feelings. Lots and lots of good folks here. I have a good responce to some of that negative kind of talk, say nothing, and maybe they will figure it out for themselves. I care about you nwsmith. ginnie

You have a right to be furious at people who claim that some organic brain injury is the result of sin. Before modern medicine--before germ-theory--the same thing was said about nearly all disease. We now know that people had no answers so they made them up. You are injured because of an impact to your brain that occurred by chance; you are not injured because of any "sins" or nonsense that people project onto you. Ignore people who tell you this. You should not have to deal with them. Seek out those who comfort you and aid your healing. Hopefully the science on these injuries will pick up soon. Incidentally, you may have doctors who behave just as badly, telling you that you are merely depressed or it's "in your head." They, too, cannot understand what is going on, and so blame the victim. They should be ignored also. Seek out doctors who have experience with TBI patients. Medical technology is not yet good enough to measure brain injuries unless they are quite extreme.

In any case, surrounding yourself with loved ones is a good start.

LOL Thanks. :) (And for the record, I've never been "stick thin".)

I'm not really taking any medications that could affect my weight I don't think. It's just from lack of being active at this point. And I'm losing it, so it's ok. (I'm just *very* impatient with this whole process!!)

The lack of support I have received from people I considered my friends has been truly astounding. These people are very intelligent and know quite well what I am going through; I have explained it in no uncertain terms. I am fortunate to have a very supportive family, but they are a state away, and I have been dealing with all of this stuff by myself.

I have tried to come up with explanations as to why so many people are so bad at showing genuine concern and offering any sort of helpful advice for others who are suffering The best I can come up with so far is that most people either don't care, or do care but just have no idea what to say, perhaps because they've never dealt with serious suffering and misfortune.

While I agree with Mark that it's helpful to have a good explanation at hand, I don't think the heart of the problem is that people can't see our condition. I do think that's PART of the problem, but I think the real problem goes much deeper: a great many people either are uncomfortable expressing empathy, or they have no experience with tragedy and don't know what to say to people who are dealing with it. Call me cynical, but I have seen this sort of reaction from people again and again (even when I explain in detail my condition), and after dealing with multiple disabling conditions in my life (PCS is only the most recent in a long string). And I have read about other people, such as Holocaust survivors, who observe the very same phenomenon in different cultures.

People are very wrapped up in their own lives, and aside from offering a platitude here and there when they happen to see you, will not typically go out of their way to offer you any real help. My parents, sisters, and a couple of life-long friends are exceptions to this rule, and I'm extremely grateful for them, but they can only do so much from a couple hundred miles away. If you do have someone who is loyal to you, standing by you and helping you out, be grateful for him or her. It is difficult to overstate how much of a difference this kind of support makes; yet it is not easy to find, and some people do not have it.

I couldn't agree more. We have such a strong sense of reciprocity that it is very difficult for us to make sense of suffering and tragedy when they happen to people who don't deserve it. The inability to accept undeserved suffering is so pronounced in some people that it leads them to postulate that the suffering person must have done something to deserve it. It's just too hard for these people to accept that horrible things can and do happen to very good people--and indeed, that they happen indiscriminately to all kinds of people.

Having said that, I don't think this explanation for why people say such things is any kind of an excuse for doing so; to add the insult of attributing a bad character to someone who is suffering horribly is utterly despicable in my book. It's quite bad enough that many undeserving people have to deal with tragedy and hardship; it is far worse when others exacerbate this injustice by blaming people for the horrible things that have happened to them.

Yes, I agree. I was horrified to read some of what others have been told by their doctors and family members and friends in this thread and similar ones.

I was literally laughed at because my speech was so messed up early on after the accident I was in by the manager of the HR Dept where I work. I've got a lot of icky stories of how offended I've been through this whole process. I just don't like to rehash it, it doesn't make me feel good at all. I really prefer to focus on the good people in my life and the wonderful generosity and understanding that amazes me.

But several people compare what I'm going through to the normal aging process, without really acknowledging that it's happening to me about 30 years earlier than it would have normally and not really thinking about if that's the case how I might be in another thirty years! I read in a book called Over My Head written by an MD who was diagnosed with PCS who couldn't work for over four years because the impairments she was dealing with, that doing that takes away the right of victims' sense of loss and severely reduces what we are going through unfairly. But she even wrote about it because it happened to her to. It must happen to many of us.

I spoke to my therapist about this very thing the last time I saw her and she says it comes from the way our minds work. So, when I tell someone what I'm dealing with, they try to understand and relate it to something they've gone through.

I really dislike it when people compare PCS to a hangover. For me, it's nothing like a hangover. It is completely different. Hangovers are not debilitating. Using that as a comparison makes others wonder why we are so debilitated if PCS is similar to a really bad hangover. Somehow they need to know how horrible and awful it is and comparisons don't cut it for me. It's not the aging process and it's not a bad hangover, there is no comparison. TBI is its own beast and should be treated as such.

My heart bleeds for people dealing with this all by themselves. It also infuriates me that anyone would have to.

hello xanadu
 

You wrote a really good post. Thank you from me too. So many it seems are hurtful to others that have medical conditions. I am glad we have each other here, at least here we can vent, say the truth, and have compassion returned to us. You expressed so much so very well. ginnie:hug:

Hi esthersdoll
 

Yes, I had to reply, you read the posts too and hear what some people are told by their families and their doctors! I get very upset of the unkindess of some. It also made me realize how blessed my own life is. I am not alone, when so many are. I especially feel for the youngsters, in their teens, who may have RSD, and their folks tell them it's all in their heads. How can a young one deal with such a thing by themselves? That is why I reach out as you are doing. I don't want anyone to suffer alone. The support here is a real lifeline to many. Glad to know you too Esthersdoll, :hug: ginnie

Thank you for your kind words, Ginnie. This forum has become my main source of support and information. I am very thankful for it and for all the wonderful people who contribute to it.

GREAT post, xanadu!!!

...and I want to thank everyone else for their love and support. This just validated my point that only the people who are going through this truly understands. If I don't have support from anyone in my life, I have the support from you guys. Thanks!!!

I think a big part of people not caring is that they have their own lives that are stressful and too busy. When they even do understand our condition, they realize that they are helpless to help us. Only those with serious commitments to us take the step to learn how to support us. The rest just go on with their lives without us.

I doubt many even consider the reciprocity issue. There is a saying, "You'll worry less about what people think about you when you realize how seldom they do." This is considered by many to be a truthful fact of life.

Unless we empower them with a way to help us, they will never make an effort to help us.

Very few people have the integrity to stay around long enough to make a difference in our lives even when they do know how to help.

Mark you reminded me of a quote I used to say over and over again when I was doing very poorly cognitively:

“Those who mind don't matter, and those who matter don't mind.”
― Bernard Baruch

I think I'll add it to the thread where we are putting encouraging quotes. :)

Over in the UK we have a very influential and poisonous tabloid press which I think contributes more than people realise to a culture of suspicion and mistrust in many areas of life. Some of its regular targets are workers who take sick days and people who are on incapacity benefit, so there are constantly outraged headlines picking on some individual who has been found to be lying about their illness, or denouncing swathes of the population as 'benefit cheats'.

They love to secretly film people or tap their phones, trying to catch them out doing something which their stated illness might preclude them doing - and there's never any acknowledgement that people can have good and bad days, or a limited amount of tolerance for certain activities.

It leads to a general attitude that if someone says they are sick they are probably either lying, hypochondriacs or just lazy. Whenever someone sees me doing something vaguely challenging I feel like I have to go on and on about how I'm having a particularly good day today and about all the opther problems I'm having, otherwise I'll be compared to some stupid tabloid story about some guy who was off work with a bad back but has been found to be a trapeze artist in his spare time.

I was referring to reciprocity in a broader and more abstract sense, such as the belief that people get what they deserve and reap what they sow. Perhaps 'reciprocity' isn't quite the right word for expressing that point. In any case, I can come up with no other explanation as to why so many people, without any evidence, just assert that if someone is suffering, then he or she must have done something bad to deserve it. Not only can I think of no other explanation, but what I was saying about some people's inability to accept undeserved suffering (either their own or others') explains this behavior nicely.

It's also interesting that many people will think the same thing about themselves: If they are the victim of a tragedy, they will think that they must have done something to deserve it. In fact, I think that most of us have a tendency to at least sometimes wonder whether we are being punished in response to something we did. This is a widespread, cross-cultural phenomenon that seems to have deep roots in the human psyche.

In any case, Mark, I appreciate your less cynical perspective (than mine) on how we should understand others' lack of concern, and what we can do about it.

Pete

My mom always talks in a very stern tone and constantly yells all the time about everything...this makes it hard for me to talk to her. I've told her over and over that I can't talk to her if she's gonna argue or talk to me in that tone...she says:

"I don't even want to be around you...I can't be normal around you."

Awesome.

When I explained to her how an argument can screw me up for days, she says "That only happens because you think it..if you don't think it it won't happen."

I want out of here so bad. This house is a huge stress ball.

Sorry, man. It doesn't sound like there's an easy answer to this one. Do you know any friends you can move in with? Can you find a cheap studio apartment somewhere?

Pete,

Not really asking for help...just thought I'd continue to share some of the hurtful things people have said to me. I'm working on getting out of here...it's just rough right now being disabled and collecting Unemployment.