I don’t tend to think of myself as someone who should be giving parents advice. Mainly because I don’t have children. And I’m also not any kind of authority on mental health. But I recently replied to a parent’s post in a private Facebook group whose daughter had just been hospitalized for the 10th time after voices in her head told her to kill herself and she overdosed on prescription drugs. I was really worried to offer her any advice but I had some hope that maybe I could help. I was amazed at the positive response my writing got from the group, so I thought maybe these words could prove helpful to someone else. Part of my wishes I had put more time and effort into making this perfect since it’s mostly a stream of conscience, but it’s better than nothing.
Here is my response to the parent’s plea for support:
I cannot imagine what you are going through. I don’t have any experience being the parent of a child who has faced hospitalization for psychiatric reasons – but I have been locked in in them myself.
I can try and offer you the best means on how to help your child. Maybe this is how I wish I was treated by my parents. I’m not here to criticize my parents, I am sooooo fortune to have them and they are amazing, but they simply were not prepared for what occurred. And even now, their understanding of psychiatry is primitive.
First – erase any ideas you may have in your mind that your child has a permanent negative issue that will ruin her life forever. That is simply not true. She is undergoing a process which is traumatic and challenging, but know that things can get better. Do you best not to let that fear overwhelm you that doctors will often spread with you. They frequently say things like, “this is only the beginning… it’s going to keep happening and get worse….” It’s just not accurate.
Schizophrenia is a label used by doctors to describe an experience that their patients have. If you really talk to people who have suffered from schizophrenia without having a DSM-IV medical checklist in front of you, and truly talk with them with an open ear and an open heart about their experience, you’ll find that it is very different for many different people. Their experience is as unique as their fingerprints. Respect and understand that the simple label of ‘schizophrenia’ is not a one-size fits all label, its a matter of convenience for the doctors.
Their experience is very unique and special. It can be very, very scary. Especially when you feel alone and scared. When you are in her shoes, you want help, but there is nobody you can truly trust for help. And I don’t mean trust in the regular way of trust… I mean trust in a way that you can trust they won’t pass judgment on you. That she can be truly open about what is going on and speak fearlessly about her experiences. But it is VERY challenging to do that, nearly impossible.
You said ‘this time is different.’ Maybe take it as an opportunity for you to reset yourself. Try and come in with a completely blank slate about everything that’s happened and revisit everything without any negative connotations.
I’m finding that I’m writing a lot and I fear that somehow I may be coming across as offensive. So rather than feel like I’m kind of preaching or lecturing, let me offering you something tangible that has helped me:
– Hearing Voices Network Groups – these are great peer-to-peer meetings where peope talk about their experiences in an amazingly open manner. They are popping up in more and more places
– Sean Blackwell’s BipolarOrWakingUP video series (videos numbered 1-23 that were made back in 2008/2009 are the best, the rest is a little fluffy) A lot of what he discusses with bipolar blends in with schizophrenia in many ways
– NewLightBeings.com online community
– There a few books I’ve read that we’re also useful. I looked up my Amazon orders from a couple years ago and saw these gems:
– The Spiritual Gift of Madness: The Failure of Psychiatry and the Rise of the Mad Pride Movement
– Rethinking Madness: Towards a Paradigm Shift in Our Understanding and Treatment of Psychosis
– The Tangled Wing: Biological Constraints on the Human Spirit
I’m not sure if you are religious. Even starting a sentence like that makes me feel I’m about to tread into uncomfortable waters…. I am not particularly religious. I suppose I could say I was “raised catholic.” But I didn’t buy into it very much. I was more science-minded. I’ve even been a high school physics teacher. BUT I will say, my experiences with my ‘unusual mental issues’ really opened a door for me spiritually. I’ll also admit that studying quantum physics probably exacerbated my condition a little bit too. It could be that I have an actually broken brain and something is really wrong with me – or maybe I’m just ‘different’ and that I’ve got some ability that is somehow spiritually linked. Many 3rd world countries have better outcomes for schizophrenia/bipolar because they treat the events not as a disease but as a process or a trauma or a ‘spiritual emergency.’ I won’t harp too much on religion if this is touchy. But look up ‘spiritual emergency’ and you’ll find some things.
– Another great resource is this one. A TED Talk by a woman who heard voices and began to talk with them and eventually integrated them into her life
Eleanor Longden: The voices in my head
– One more I’ll add. In Massachusetts they have an “RLC” – “Recovery Learning Community” which is all about peer support for people with mental health troubles. Not sure where you are located, but seek out peer-to-peer support groups. That’s the best stuff.
I am terribly sorry if anything I’ve said has hurt or offended you. I have some strong opinions about this subject and really only intend to help. Please know my words come with confident optimism.