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Sunday, June 15, 2008

A note to experts on mental health

It's been a long 4 days but well worth the time for the most part. I met a lot of fantastic people dedicated toward making lives better because they care. PTSD was my focus during the convention and what is going on with the VA. Lots to post tomorrow but I'm really exhausted. The convention ended with Jane Pauley getting an award for her public "outing" of her less than "normal" life she had always been known by and her battle with Bipolar.

For right now the most important thing I want to post on is the fact that while we do have some heroes as professionals in mental health trying to move some mountains out of the way, there seems to be a lot more being done by regular people who live with all of this on a daily basis instead of just listening to other people's problems. There was a guesstimate of 1,800 people at this convention. It could have been a good guess since there were people who participated part of the time but did not stay for the whole 4 days. NAMI should have the figure up when they update their site on the weekend.

Some people need to pay attention to what I'm about to say and take it very seriously. I am addressing people who want to regard themselves as "experts" because of their position alone and not dedication to the work. This is not supposed to be a job when you are dealing in mental health, this is supposed to be something you are called to do and most do it because they are living with it. So here it goes.

Do not stand in front of people who live with PTSD or any other kind of mental health issue and tell them what is not true. If you believe something that is not true they will disregard everything else you have to say. I walked out of several sessions. I was not alone. What happened after was that we congregated outside and talked about what we just heard. Keep in mind, there were at least 20 sessions going on at the same time so I believe that the few who gave false information or opinions were a rarity at this convention. This has not just been my passion for over 25 years or my calling, it's been my life. I take it all very seriously. So seriously that it is as if my life depends on the answers because it does. Don't stand up there and tell us what we know is not true. If you are not sure, then ask someone who knows or don't say a word about it or it will blow whatever else you have to say.

If a person asks you a question, listen to what the question is. Do not translate it into something that has nothing to do with the question but will fit into whatever kind of spin you want to put on it. It obliterates whatever qualifications you had that put you in front of the room. Do not try to answer the question if you do not know the answer. Honesty here and a bit of humbleness will go a long way. No one expects you to have all the answers. Give the question to someone else of the panel or simply say you don't know. As an expert, you are expected to know more than the people asking the questions. You are who we turn to in order to learn. We are not children. We are dealing with and living with what you have studied to learn. Treat us like that. You may read it in a book but we live it. We are the people you read about in your books!

I don't know much about other mental health issues because I do not live with them and have not studied them. I have not invested as much time or energy on them. I can only address PTSD because that has been a part of my life. I do however have a better understanding of what other people are going through with their own brand. It's hard. It's very hard to live with and we are all looking for knowledge. While we may pray for a magic pill people we love can just take and end up "normal" again like the "rest of us" we know that is not going to happen. We only want facts and we can get our own hope but what we cannot do is get our own facts. For over 25 years PTSD has been what I live with and know like the back of my hand because living with my husband has opened the door to the other veterans I come in contact with and there have been hundreds of them over the years. Because of them, this has taken me to a world faced by all others dealing with PTSD so don't stand there and tell me something I know is not true.

At the end of the day, after you are done talking and "treating" patients, you get to go home to your normal home life but we get to go home to what has become normal in our lives and it is nothing that would resemble normal to you. You know you can go home to a family that is in one piece and the usual problems "normal" people deal with while we get to go home to those problems along with a crisis you will only read about in a book. Some of us spend years not knowing what we will go home to. We don't know if our house will be destroyed by an outburst or a bad day that will cause havoc. We don't know if someone we love will be having a good day or a day from hell or if may say just the wrong word setting off an explosion. We don't get to say we are tried and just want to relax when they are suffering. I spent enough of those years never knowing what I would come home to, if my husband would be alive, sober, angry, or if he would be there or not. I thank God those dark days were long ago but there are a lot more families going through those same kind of days today and it breaks my heart. So please remember the last thing we want from you is telling us what we know is not the truth.

I'll post more on this and the rest of the convention tomorrow. I just had to get this out before I try to fall asleep.

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