Yesterday morning I got an email from a close friend. She was concerned about a twelve year old relative of her friend - a girl who has recently been diagnosed with paranoid schizophrenia. She is on medication (we don't know which) and has already been told that there are certain jobs she will not be able to do later in life. She is apparently a very bright and able child, who has been self harming for about a year and who recently confided in the mental health services that she has been hearing voices. The parents are going with the medical opinion, but my friend's friend wonders if this can be the right diagnosis and treatment for such a young child.
I am so shocked at this story! I recently spoke to local mental health services about the impact this diagnosis has had on my life and how wrong the prognosis (that I would never get better and would always need medication) turned out to be. They seemed to understand and to sympathise - they asked lots of questions after my talk. One of the team asked me if it would have been better if my anxiety had been dealt with earlier, when I was younger.
Well, of course it would have been better, I said, if I had been helped before I had become psychotic. But I failed to specify that this would depend on the sort of treatment I had received. What I should have said was: Care, understanding, talking therapy, attempts to help me deal with anxiety - yes. Drugs and a diagnosis - obviously not. But did I perhaps not spell this out clearly enough? This girl is local - and I cannot help wondering whether some of the people treating her were actually at the meeting where I spoke about my story.
How can anybody think they are helping that child by treating her in this manner?
Whenever I talk to mental health professionals about my experiences I am told that things are so much different now, so much better now... Somehow I doubt it.
And this email came just before I was due to go to another meeting, held by the Peer Network I am working for, attended by people all over the country, about recovery. My time there was tainted by the thought of this poor child - struggling with emotional distress, told that she is a paranoid schizophrenic. That she has a brain disease that can be solved with medication - oh no, not solved, because she will never get better, there will always be things she cannot do with her life so she might as well give up hope right now.
What are we doing with all these meetings and talks when this stuff is happening around us regardless? Are we helping to implement change at any level? Or is lip service simply being paid to the experience of people who have been through the system and the attempts we are making to change it?
I have already mailed my friend, linked her to all the information I can find - all the wonderful sites I already know about, all the things I know about emotional distress and the best treatment for it. If anyone out there has any further ideas of how to help, please let me know. Obviously, it is the parents that will need convincing - and if they have been struggling with a child who has been self harming they are probably desperate to help and probably like most of us they trust the medical professionals to know best. My friend's friend is just a relative - but maybe if he has enough information, he will be able to convince them to consider alternative ways of looking at the problem and of treating it.
To let a twelve year old girl enter her teenage years convinced she is a paranoid schizophrenic and taking dangerous drugs to treat this 'brain disease' seems to be to be nothing less than child cruelty. I can hardly believe that such things happen in a civilised country, and so close to home. I am fuming! I do hope that nothing I have written here contravenes any confidentiality - I have tried not to give any personal details. I don't want to make things worse for anybody. But I am proud that my friend asked me for help on this matter, and I want to do the best I can to provide that help. So please, anybody with any ideas, post them here and I will pass them on.
I am sure of one thing - I am going to finish my recovery book as fast and as well as I can now. I write a lot better than I talk, and a lot more clearly - and if even one person reads my book and gains any sort of knowledge about how better to treat young people with mental health issues then it will have been a job well done. So that is going to become my absolute priority, and all my efforts are going to go into that book until I have written it to the best of my ability.
This is a terrible story and drugs and labels are definitely not going to help, just push the real problem under the carpet. What that child needs is hugs, reassurance and love. She needs somebody who will help her to get to the bottom of what is causing her anxiety and guilt. Something must have brought it all on. Also: is she eating properly? Is she sleeping? What is her relationship with her parents? Does she feel under some pressure at school etc...Once the underlying problems are taken care of, the voices and the self-harming will go too. I am speaking from personal experience. My parents were clever enough to address lovingly my emotional problems and my voices disappeared just like that. All I needed were a few valerian tablets to help me sleep.
ReplyDeleteThank you. I think you have told me your story on here before, and I relayed it to my friend in my email this morning. I will send her a link to this comment too - it is so much more valid and reassuring to hear this sort of advice directly from someone who has been through the same thing and come out of it as well as you have.
ReplyDeleteUnfortunately this is very common in young children, especially in the USA. Even in this country there are very young children on very powerful medications that are unnecessary yet doctors insist that they need them. Protesting that meds don't help is the wrong way to go - every time I protested, the meds got stronger. Youtube has videos of a 7 year old who appeared on Oprah who is diagnosed with having childhood schizophrenia (part 1 of the video http://www.youtube.com/watch?v=WjqRYgICgdU ) and in the second or third part they show her best friend - a 9 year old girl with paranoid schizophrenia. Both of them are on powerful meds and what struck me the most was when the Jani (the 7 year old) was taking her meds and describing them. She called them Clozi and Lithi (Clozapine (I think) and Lithium). The part that struck me most was when asked if they helped and she said no. For medications not to help seems pretty common.
ReplyDeleteIf you really want a shock and to know the truth about psych meds, here's an extremely disturbing video:
http://topdocumentaryfilms.com/making-a-killing-the-untold-story-of-psychotropic-drugging/
It's an hour and a half long but well worth watching. I referenced it whilst in hospital and was told many times that the information was biased and untrue. I replied that THEY were being biased and untrue but after a long discussion I ended up having to take Lorazepam. I had many long discussions with various nurses about the dangers and overuse of psych drugs and they all said that these thoughts were just delusions - chemicals malfunctioning in my brain. Eventually I gave up. Not because I stopped believing it but because I was sick of all the Lorazepam!
On a more positive note, Channel 4 are bringing out a documentary at the end of the month (don't know exact date or time) about Mental Health in the workplace in a bid to reduce stigma. I applied for it but applied too late. At least they were nice enough to respond!!!
Sorry, have waffled a lot and the thing I actually wanted to mention was this issue with your friends 12 year old relative. To be brutally honest, I don't know how to convince her parents to stop her taking powerful meds - maybe show them the Making a Killing documentary? But when it comes to preventing her from self-harming, the best way to stop her from doing it is for her to speak to an ex self-harmer. I know too well how devastating self harm can be. How guilty I felt going to A and E for stitches when there were young children in agony and I jumped the queue because I was bleeding too heavily. How annoying it is that I have to wear sleeves all the time and prefer long sleeves in even the warmest of weathers because of my scars. Thankfully the most visible ones are on my upper arms and shoulders so I can get away with short sleeves most of the time. But look closely beneath my watch and the scar from one suicide attempt is just about visible. I feel very passionately about young self harmers as I myself was one. I started at 14 and thankfully haven't harmed myself since about December 2010. But the urges to self harm have never gone away and if I could stop her from becoming 'addicted' then I would love to. But I think I'd be a bit far away! But if you know anyone who has been addicted to self harming (I know from your book that you never were - thankfully!) then I would advise that you speak to them discreetly and see if they would be able to speak to this young girl. Otherwise, just make sure her parents get her talking therapy ASAP. If they can afford it, get private therapy as this is faster to get. But make sure they get her talking therapy ASAP. Worked wonders for me!
I apologise again for the length, I probably could have skipped some parts out but it's nearly midnight and I'm too tired to read this through again! So if it doesn't make sense I apologise!
Best wishes
Katy x
This is absolutely terrible, and actual proof that things are really so much better nowadays. Despite people like us trying to get the word out, it's the institutional verdicts that carry weight with parents. The good news is, that there are people like us who are speaking up in numbers. The parents will neeed to get over their shock and their grief and start to read up on alternatives. They can start with the Mad in America site and Rethink. Thank goodness for the Internet!
ReplyDeleteThanks, both of you, I will refer my friend to your comments. Katy, it is kind of you to have spent so much time on this - I am sure your comments will carry particular weight with this girl, if they can be relayed to her by her relative. Louise x
ReplyDelete