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.

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

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, 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.