Wednesday, November 21, 2012

Coming your way - the empowered patient

I was reading a forum recently on the topic of 'staring OCD', a very distressing condition. The discussion was headed by a doctor who was either a psychiatrist or psychologist. Some of the sufferers suggested that their condition seemed to be caused by a combination of social anxiety and OCD. The doctor responded that this wasn't the case; instead the staring OCD was causing the social anxiety.

How could he know that this was true for each individual sufferer? To my mind it's arrogant to make a sweeping dismissal of patients' lived experience of comorbidity in this way. Staring OCD has been all but ignored; many therapists seem not to have heard of it. For some patients it could well start off as an obsession with staring and progress to social phobia, but it's not exactly farfetched to suggest that the two are often connected from the beginning; the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) acknowledges that social phobia and OCD in general often occur together.

This is an example of doctors being in love with particular categories that patients then have to squeeze themselves into, even if it's an uncomfortable fit.

It also suggests how important it is for patients to empower themselves and learn to trust their instincts (as opposed to 'listening' to their illness).

An empowered patient might refuse to take this doctor's opinion as gospel truth if it doesn't chime with her lived experience. At the same time she might recognise the doctor's overall expertise and use his knowledge in other areas as a resource.

What does empowerment mean if you have a mental illness?

About two months ago, for the first time in a decade, I started taking Luvox, an SSRI that is often used to treat OCD. Around this time I became fully aware of one of my 'conditions' for the first time, and the many ways it has affected me over the years and continues to do so – pure obsessional OCD, or 'pure O' as it's sometimes called (sounding more like a soap powder than a mental illness).

Being on the drug has made me think a lot about what it means to be mentally ill, to have a condition that affects the way you relate to others, and to be 'medicated'. It's renewed some of my regrets about my earlier failures to make the most of drugs to improve my mental health, and to take responsibility for my life rather than handing over too much power to therapists. Here, then, are some of my thoughts about these issues. Please be aware that the recommendations I make are reflections of my own experiences.

Psychiatric drugs that have an acceptable degree of clinically proven efficacy and safety are neither good nor bad – assuming, of course, that the patient needs the drug and can benefit from it. Along with therapy they are tools, with two people wielding them and responsible for their safe use – the therapist and the patient.

Both need to understand that a drug is not a cure but a starting point. Assuming the drug is compatible with the patient's biochemistry, along with therapy it may enable her to reach a level of functioning that makes further change possible. Positive changes in the brain made by the combination of drugs and therapy may lead the way to further brain changes as the patient gets used to ever riskier and more challenging activities.

Whether positive change takes place depends on the commitment and hard work of the patient, and the effectiveness of the therapy, but there are also a host of other factors: the severity of the illness, the patient's support structure, whether she has security in housing and finance, and whether she has other addictions or health issues.

All this suggests an approach that considers the dynamic between patient, drug, doctor and the patient's larger social context. Within this dynamic there is one factor beyond all others that to my mind determines success.

The patient's degree of maturity is a key element in the treatment. She must be ready for the effects of the therapy, including the initial side effects of drugs, and the ups and downs to expect. She must be able to 'hold herself' and to withstand the whirlwind of change without dropping the therapy in a panic if her beliefs are challenged or as soon as something goes wrong.

Maturity enables the patient to be as fully aware as possible of the nature of her illness, and the way it operates in her life, and to separate the illness from her own self-image.

Maturity implies empowerment and self-advocacy. In some instances it may mean a patient who talks back, who appears to be non-compliant, who doesn't always take the therapist's word as gospel.

In some respects the patient may be more knowledgeable than the doctor about the day-to-day, lived aspects of her illness. This should not be surprising; given that less than half a century ago some doctors were still sticking ice picks into people's eye sockets and detaching the prefrontal cortex from the thalamus, it's fair to say we're at an early stage when it comes to understanding the nature and causes of mental illnesses. For example, we now know that the diagnosis of schizophrenia actually refers to a cluster of illnesses rather than just one.

However, the doctor will be more objective and have insights that the patient needs; the patient must find a balance between trusting her own instincts and taking full advantage of the doctor's expertise and objectivity. And doctors need to retain a degree of open-mindedness about the lived experience of patients and to look at qualitative as well as quantitative evidence, while not indulging or kowtowing to their patients.

Benefits of empowerment

It took me years to become empowered because I had to struggle with lack of information from therapists and my own dysfunctional thought processes to get a clearer view of the world. You need to know yourself and the operations of your illness very well before you can be an empowered, assertive patient and not simply non-compliant.

Ironically, the very psychiatrists who disempowered me by refusing to give me a clear diagnosis – something I didn't think to ask for myself – helped me in other ways by encouraging me to shed many of the deluded ideas I had about life, to grow up and to take some responsibility for myself.

It's my belief that if therapists want ultimate success they should try to foster empowerment in their patients. I'd go so far as to say that encouraging the necessary maturity for patients to actually grapple fully with their illness should be one of the major goals of therapy. While a certain degree of empowerment and self-knowledge can only come from experience, therapists can do a great deal to hasten the process.

No therapist should feel threatened by the idea of an empowered patient. Without life skills, self-knowledge and maturity, the patient can't get the full benefit of the therapy. An empowered patient is one who is motivated to change and recover to the extent possible. An empowered patient and their therapist can become a team with a common goal while still having separate roles and responsibilities.

Below are my ideas for the way therapists might do this. Of course some therapists already do some of the things I call for, such as encouraging their patients to join a self-help group.

A better way

These are the steps I believe therapists should take when they're establishing a relationship with a new patient.
  • After gaining an overview of the problem, explain herself, her qualifications and methods of treatment, and let the patient 'interview' her.

    The patient needs to find out whether she wants to work with the therapist, while the therapist needs to ascertain whether she feels she can help the patient or whether the patient should be referred to someone else. Many therapists simply assume that they are the person for the job.
  • Once enough information has been gained, tell the patient exactly what she believes is wrong with her and the implications of this. The therapist should be open-ended about these implications.
  • Point the patient towards resources rather than suggesting that she is the only resource.
  • Encourage the patient to arm herself with knowledge and join self-help groups.
  • Encourage questioning and feedback, while being willing to call the patient out when she exhibits thoughts and fears that may be related to the disorder.
  • Set up a treatment plan with goals (to be agreed by the patient) and ways to achieve those goals.
  • Encourage the patient to pursue a healthy lifestyle and to get the basics of life right – housing, work or financial support, strong relationships. If there are barriers to any of these, they should be treated as goals and included in the treatment plan.
  • Work out if the illness has created distorted thinking and ideas about life, society, and important life goals, and personality factors such as dependency and narcissism. If these kinds of things aren't identified they could stymie the treatment. Personality problems don't need to be fully blown personality disorders to sabotage progress.
  • Share these findings with the patient and incorporate them into the treatment plan
  • If the patient has concerns about medication (common for OCD sufferers, for example) rather than taking offence or trying to fob the patient off she should talk about risks versus benefits, ways to minimise side effects, and assume the patient has a 'What's in it for me?' approach.
Empowering young people

I was pleased to hear that some aspects of this approach are being used in the treatment of schizophrenia in young people. In a recent discussion on Radio National about the latest treatments, the practitioner spoke about the importance of early intervention, and the need to tell young patients that it was important to focus on two things that are basic to happiness: work and love.

I couldn't agree more. Young people with mental illness need to be encouraged to grow up faster than their peers. Work and love are, after all, the goals of most people's lives (which is not to say that a recovery plan should always aim for, say, a full-time nine-to-five job and a long-term relationship – recovery for some people could mean volunteering and establishing new friendships).

Following a thorough diagnosis (including personality factors) and treatment plan, this is what I wish I'd been told when I first presented to a psychiatrist at the age of 21 with an unspecified nervous problem. I would like to see all young people receive a similar introduction when they first enter therapy.
  •  How you manage this condition will affect the quality of your life.  The most important thing you can do now is grow up and learn to look after yourself, and work on your treatment plan. While a certain degree of rebellion and acting out is normal for your age group, it may just hold you back and threaten your recovery.
  • Get the basics right.  A secure roof over your head, good diet and exercise, strong and healthy relationships are essential to your recovery.
  •  Alcohol and caffeine are not your friends.  If you have any serious addictions, go into treatment for them.
  •  Use your time wisely to develop as a person.  Focus on strong friendships, and work towards being partner-ready without being obsessed about finding a partner. A strong relationship can greatly assist your success, so work on yourself.
  • Don't try to do all this perfectly.  There will be plenty of times when life gets temporarily busy, and there will be setbacks as well as strides forward.
  • Be sensible about sex. Sexual experimentation can be good and healthy but only if it is fully consensual and you feel happy and comfortable about it. But sex as an escape, or sex that is exploitative and not enjoyable for you, is simply a waste of your time.
  • Learn to separate your thoughts and intuitions from your feelings.  Trust yourself, but don't necessarily trust all your feelings all the time – they will chop and change. Learn about your intuition and separate it from your emotions. Learn to follow your gut but remember your emotions aren't always telling you the truth.
  • Don't give away responsibility for yourself.  Respect professionals and their advice but view them as resources.You are not there for their benefit; if they're not helping you, you are under no obligation to keep seeing them. On the other hand, try to tolerate a state of openness and unknowing; it may take time to form an opinion on whether a treatment is working. Leaving simply because a therapist challenges your boundaries, prejudices or distortions would be self-defeating.
  • Understand that there is nothing wrong with the essential you.  Your disorder is stopping your true self and personality from expressing itself. Your goal should be to come home to, and learn to love, the body and mind you have, and to live your own life, not someone else's.
  • Work towards a sustainable career.  Where work's concerned, it's a fine balance between taking your illness into account and stretching the boundaries. Accepting and managing the illness is vital to your success. Choose your vocation carefully – whether you have to give up on a particular dream or pursue it will depend on individual circumstances but management of your illness must come first if you want long-term success and health. At the same time, sometimes only experience can tell you if a career path is right or not; cultivate flexibility and be willing to change to a related career or different way of working if a job or vocation is too stressful.
I was a very rigid thinker, and had strange ideas about the world, when I was 21 and first spoke to a psychiatrist about my nervous condition. Would I have been able to take advice like this on board at the time? Probably not if it was verbal, but if something similar had been given to me as a leaflet, and presented as advice from other sufferers, it might have helped.

Most of all, if I'd been told that I had a serious condition, a chronic illness if you like, that I would have it all my life, that no magic Freudian catharsis was going to get rid of it and that it was up to me to accept this and learn to manage it, I might have cultivated more sticking power, patience and resilience. I hope people going into therapy for the first time can get the full benefit of the many resources now available to them, and understand that they are their own greatest resource!

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