You may wonder why my blog title is ‘AWEgust Day 5′. The reason for this is that I’m undertaking a challenge to raise money to train more mentors for the I CAN Network. I will be writing a blog post every day between now and the 31 August. So far some good people have donated $18.50 and I’ve had a promise of $93, which is good but I am hoping the raise a little more than that. Here is the link for donations if you feel the need:
Today marked an occasion in the ongoing and rather too interesting Jeanette journey. I saw my new, private psychiatrist for the first time. I have lost count of how many of his colleagues I have seen over the years – they all merge into a sort of conglomerate mass of the mental health professionals I have seen in my lifetime. I saw my first psychiatrist when I was five – I probably should have realised that I was in for an ‘interesting’ life there and then! Mental health professionals have been part of my life forever. The fellow I met today is the latest in a parade of professionals of varying quality and value.
I have two significant brain-related diagnoses which impact on one another and in the past have confused doctors leading to misdiagnoses, disrespect and at times maltreatment. Sadly I know that I am far from the only Autistic person this applies to. Autism is a relatively new diagnosis and is often missed by professionals or mistaken for something else (often borderline personality disorder in women and schizophrenia in men). I have had a large number of psychiatric labels over the years. It got so bad that once in hospital during a hypomanic episode I demanded the nurses provide me with a copy of the DSM IV diagnostic manual so I could read through it and figure out my diagnosis myself!
My current – and possibly the most accurate – diagnoses are Autism spectrum condition and atypical schizophrenia, but labels are such a subjective thing – two doctors confronted with the same Jeanette can apparently arrive at different conclusions. I used to set a lot of store by the psychiatric diagnostic labels but now I see them more as a shorthand so that doctors know what medication to prescribe. My new doctor – who works part-time with my former psychiatrist in the public system – has had a conversation or two about my history and presentation. He asked me what I thought my conditions were and I told him I thought I was on the autism spectrum and also had a sort of ‘sampler’ mental illness with a little from the psychosis column, a little from the anxiety one and the depression one and so on. I don’t think he agreed and seemed happier with the schizophrenia one. I’m not sure how I feel about that rather loaded label. As I mentioned on Sunday’s blog, that is something a work in progress.
The labels are a concern though. Partially because some people in the community have a lot of prejudice about this one or that, and also because a ‘wrong’ one can determine how you are treated by psychiatrists and other mental health workers. Having had the misdiagnosis of borderline personality disorder in the distant past, I know how that particular label can mean that one is disrespected and dismissed and treated like you are seeking attention or being manipulative. A practical consideration for those misdiagnosed with BPD is that if you need to be hospitalised, good luck, for hospital is seen as unhelpful in treating that condition. Also it is a label which often means some clinicians harbour some prejudice against you. And so many women on the Autism spectrum are mistakenly given that label meaning they have inappropriate treatment and prejudice to contend with along with everything else.
I like my new psychiatrist. He is respectful and understands clearly that I am paying him so therefore he is my employee, charged with providing advice rather than dictating the terms of my treatment. I know that because I explained that to him as my expectation and he was happy with it.
Some considerations around getting the best out of psychiatrists:
- Learn to be assertive – you may need it! Remember that you are the ‘subject’ of the treatment. As such, the relationship between you and doctor is about helping you.
- In the private system, if you are looking for a new doctor, do some research. Ask people you know with similar health issues what their experiences are. Ask someone in your local Autism organisation if they have a preferred list of psychiatrists and pick from there.
- A psychiatric diagnosis is never final. Seek a second opinion if you don;t agree with the diagnosis you are given initially. And it does;t hurt to be informed about the different conditions and how well you feel you ‘fit’ with some of the diagnoses
- Apparently 20 per cent of people with a mental illness do not have a neat diagnosis that fits in the criteria in the DSM -5. I haven’t seen data but I imagine a lot of people on the Autism spectrum fit within that 20 per cent.
- Doctors – and psychiatrists – should not be put on a pedestal. They may have qualifications and have attended university for many years, but they are human too. They are just as capable of mistakes and silly ideas as anyone else. If you feel frightened to take your psychiatrist to task when they say or do something you find damaging or unhelpful, it may be time to find a new doctor.
- Medication is hit and miss. If your doctor suggests you take medication (or start a new medication) find out what you can about it, including uses, possible side effects and possible long-term effects. It is your right to ask these sorts of questions of your doctor and also research online. The same goes for any diagnosis you are given.
- Psychiatry is a service, like plumbing or carpentry. If your plumber can’t fix the leaking tap, you won’t ask him or her to come again. Likewise, if your relationship with your psychiatrist isn’t working out, you have every right to find a new one. They are there to help you, not control you. Even in the public system you can ask for a different doctor and state that the therapeutic relationship is unhelpful or damaging.
Pretty flowers and Mr Kitty are also quite good therapists…